Rod’s Blogs, Poems, etc.
Table of Contents
- I search for meaning. 6
- ‘Behavioural’ 8
- 10 Years. 10
- 10 years. 11
- 99+. 13
- 1559 days. 15
- A response to Henry. 17
- A tale of two times?. 18
- Acute. 20
- Advance Care Plan, Human Rights & I want what I want 23
- alea iacta est 25
- All I know is that I know nothing….. 27
- Alone. 28
- And the award goes to….. 30
- Are there any Jews?. 32
- Are you looking at me?. 33
- At nurse’s discretion. 35
- Barbara Robb – Sans Everything. 37
- Bit of an arse. 38
- Black. 40
- Boggle – Mellick style. 42
- Bougainvillea. 43
- Chess moves, the NHS & Being There. 44
- Cognitive Dissonance (2) 46
- Colon. 48
- Cows. 51
- CRP aka un-person-centred care. 53
- Dad, did you get the job?. 55
- Dead. 58
- Decisive Moment 60
- Delirium and numbers. 62
- Dementia #. 66
- Disaster avoided (2) 71
- Digging. 74
- Do NOT resuscitate. 76
- Do you, or don’t you? (for dog walkers) 78
- Doing to and with. 80
- Dream.. 82
- DToC. 84
- Eclipse. 86
- End of Life. 90
- Evening river 92
- Evidence-free zone. 94
- Fall 97
- Flooding, etc. 99
- Forest 102
- Forward and Back *two. 104
- FREEDLAND AND RULES. 106
- Funny… De-diagnosing. 108
- G46. 111
- Genomics. 116
- Geriatric fall 118
- Grass cutting. 120
- Heather 122
- Here is the place. 123
- Home. 127
- I am Trusted by 86%.. 129
- I, Daniel Blake. 133
- I love you, I hate you. 136
- I may be right. 138
- I remember 140
- I step out and fall back in time. 141
- I was listening. 142
- I wish you long life. 143
- Ice (Rouken Glen) 145
- Improving?. 146
- In your sleep. 148
- Insight 150
- Intermediate. 152
- iPhone. 163
- It flows down. 164
- It’s hard not to be rude. 165
- Just by looking. 167
- Length of Stay. 169
- Let’s pretend. 171
- Long lie. 173
- Look, over here. 176
- Magic money tree. 177
- Maimonides and Bruce Lee. 179
- Maisie. 181
- Marina. 182
- Martin & Worms. 183
- Me, we, dementia and Donne. 184
- MEDICALLY FIT – TODAY AND TOMORROW (3) 187
- Medically fit 190
- Memory 3. 192
- Moment 194
- Moshe. 197
- My old headmaster Moshe. 199
- Nemo. 200
- Never expected it to be this hard. 202
- Night Frozen. 204
- No more heroes. 205
- Noise. 207
- Non-narrative. 209
- Not many years left 214
- Now.. 216
- On the basis. 217
- One thing new.. 221
- Pacemaker 222
- Painful. 225
- Pareidolia. 226
- Seeds. 228
- Pillars of the Earth. 230
- Planet 234
- Positive Psychology. 235
- Post-traumatic bullying disorder 236
- Quiet (photo of my dad, for Paula) 238
- Ransacking. 240
- Restraint. 241
- Ronen El-Kabir 243
- Safe, comical moment. 244
- Schlaf / Shlof 246
- School and hospital 248
- Screen-time (1) 250
- Screen-time (2) 251
- Shallot 252
- Slap. 253
- (0.047) The Speed of Snail 254
- Something medical. 256
- Speed of light 258
- Stick. 260
- Stuck. 262
- Suffering. 264
- System.. 266
- Teach thy tongue to say I do not know.. 269
- The cardboard night 271
- The Death of Stalin. 273
- The epigenetics of being a doctor 275
- The Hazards of Polydoctory. 277
- The past (Glasgow Jewish Community, dementia & reminiscence) 279
- The Perfect Patient Pathway. 281
- The Red Sea. 283
- There is no money. 286
- Things. 288
- This is me 33%.. 290
- This is me (&you) 291
- To learn. 294
- Tree. 298
- Trees. 299
- USA, etc. 300
- UTI 302
- Values. 304
- What makes networks work?. 306
- What we know/humility. 308
- Where do we go from here?. 309
- Winds and tomorrow.. 311
- Working 9 to 5. 313
- Yesterday – disaster avoided. 315
- York – somewhere else; 317
- You can’t always have happy endings. 318
- You don’t live here any more. 319
- You made a mistake, dare I say….. 324
1. I search for meaning
It is likely that many reading this blog will be familiar with the Austrian Psychiatrist Victor Frankl and his book Man’s Search for Meaning which was published in 1946, soon after his liberation from the Auschwitz concentration camp.
The book describes Frankl’s experiences wedded with an interpretation of what he saw through a lens of Humanistic Psychology – this he later translated into his own field of Psychiatric theory, Logotherapy – literally, meaning-therapy.
First things first; if you haven’t read the book, please go to out and buy or borrow it.
Beyond this, the main principle of Logotherapy relates to the necessity for meaning in life; this is closely wedded to Nietzsche’s ‘He who has a why to live can bear almost any how’ – meaning beats method.
My reason for bringing this to my blog, other than to perhaps get someone reading Frankl who has not already, is to reflect the similarity with this teaching, derived first from 19th Century European Philosophy, then 20th Century human suffering and now in use in 21st Century patient safety and quality improvement in healthcare.
The modern interpretation relates to a component described at the conference I attended the other week in London, hosted by the BMJ/IHI.
The session focused on joy in the workplace – and, it’s associations with high quality, safe care.
Happy staff provide safe care.
So, how do you keep your staff happy? How do you create a culture of joy in the workplace?
How do we generate happiness and joy?
Safety. Psychological, physical, occupational, spiritual safety.
Only when we are not on the lookout for threat can we begin to connect with our imagination, our creative spark. Fear sends people to the bunkers (mattresses in Corleone speak), you sit and wait for the storm, the fear or the threat to pass.
One element therefore of creating a safe, enjoyable, creative workplace is to allow people to be themselves, away from fear, away from criticism and analysis.
This links to another great work – To Err Is Human, published in 2000, which reflects the untold story of patient safety in healthcare – showing for the first time to a stunned public, the extent of the harm, predominantly through error, mistake and human factors within healthcare.
The title focuses on the reality of life in any complex system – we are all human, we all make mistakes; it so happens that the more fearful an environment, the more likely people will err, separately however, is the way to fix the system – how to address the errors.
This suggests that punishment or retribution for those who err does not help – it just makes everyone else more fearful and creates a culture of deeper fear; you improve safety by acknowledging that we are all human and all prone to error and the response to error is early identification and learning.
In recent years with Albert Wu and others’ work on second victims we have learned that learning for the person, the team or organisation involved with the error is not enough – the individual caught-up in the mistake needs support.
And here is the connection back to Frankl. A safe workplace is a joyful place to be. Safety is achieved through the staff having a sense of control of their own lives and meaning for their efforts.
This is when we call on the famous quote – ‘I’m not mopping the floor, I am helping to put a man on the moon’ (sorry for all these male slanted references – most are from last century).
Allowing staff to understand their role, to see that whatever they do is part of an overall project of improvement, of patient recovery and wellbeing, in critical.
When staff are involved in helping determine the way to achieve that goal, one that is meaningful to them, we have something special. When an adequate sense of safety pervades the workplace so that anyone can ask anyone why? Without fear; or when people can propose solutions, work-arounds or fixes that are outside of the hierarchy, outside a systematic approach to management and organisations, that is when you are on to something.
This is when meaning and joy come together to create a happy, resourceful, sustainable and safe workplace.
This is a term you sometimes hear on the wards, as in, ‘She is very behavioural,’ or, ‘The minute he saw me he started shouting, it’s all behavioural…’
This to me is interesting, particularly in relation to physical or mental health or both.
Mostly this is said about older people who act in a way that is not consistent with their underlying disease – what I mean, is, say someone is crying when you approach them, they may say their back is sore, or their neck, or they feel sick or anxious, the complaint doesn’t really matter.
In medicine, when someone has a symptom that is associated with a certain disease process, that’s OK.
Arthritis – sore hip – OK, ulcer – stomach pain – OK, epilepsy – collapse – OK.
If the symptoms and the signs (what is found on examination) are consistent with what is in the text-book, things are cool. It might be incurable, but at least your situation is grounded in anatomy, physiology and logic.
Behavioural is when cause and effect break-down:
Normal hip (or knee, or back) – sore hip; where do you go? Or, collapse – when the doctor approaches, hyperventilation when family depart.
All of this is sometimes, after a lot of effort and careful balancing described within the context of functional illness – that is, symptoms that have a cause that is not physical but psychological.
In this model,
anxiety – sore back – OK or, depression – collapse – OK.
It depends who is examining or assessing you. In some circumstances, you might be considered to be ‘putting it on’ – malingering; in another, one that is perhaps more informed, your experience is taken on face-value and the cause doesn’t really matter – psychological or physical, the pain is the same.
Mostly, when behavioural is used in relation to my patients, this is someone who is older who has an underlying diagnosis of dementia or delirium, but, who does not have a physical abnormality to account for their symptoms.
It is akin to functional, yet, in the world of acute hospitals this is not a widely accepted or understood term, instead therefore, behavioural.
Yet, when you consider it, when you take either a physical or existential microscope and look inside, there is usually something wrong, something amiss that explains the behaviour. In the case of someone who has dementia, this can be an inability to either comprehend the situation or express their emotions. Such that,
Distress – lie on ground, anxiety – collapse.
I guess my point is that specifically, if we were better-informed – perhaps more enlightened or knowledgeable, we would understand that when someone has a psychological symptom, whether there is anything physical underlying or not is hardly the point. To me, it is just that we can’t see with enough detail or clarity.
Stroke – altered behaviour, is considered OK, that is brain-damage, but, early dementia – behaviour is not; sometimes, and this is when it is most difficult, a person seems to be fine, they are getting-on with their lives, yet, in certain situations, for example, during hospitalisation, the behaviour becomes apparent.
We could take one approach and consider that the person is inducing the symptoms, trying to con us into being helpful or sympathetic, or, you could take the symptoms on face-value.
Within this there is a 21st Century tension. As we are able to look in incredible detail at the insides of our bodies using CT, MRI and functional imaging, people consider that we must have a window into all maladies. This leads to more and more sophisticated and complex investigations which potentially lead to false-positives and increased anxiety.
We can see which part of the brain lights-up or not when you are thinking of fish-fingers or you smell avocado, as to the individual neurones, the quantum waves that constitute thought, idea, emotion or inspiration we have a long way to travel.
Where does all of this take us?
It takes us to a point where we must consider all symptoms as they are. For some we will arrive at a straightforward explanation – fall – fracture – pain; perhaps the substance of a material world, at other times we will have just ‘pain’.
Acknowledging that pain is pain no matter the cause is central.
Just as with suffering, it is not something that can be measured and compared, it isn’t absolute, it is relative like everything else in the universe, and, the only way to approach this proportionately is with empathy and compassion, try to understand, and when you don’t understand accept your or the system’s limitations, don’t blame the messenger. Celebrate them as they are providing an insight into a world that is yet to be discovered.
3. 10 Years
I was blown away yesterday.
It has been 10 years since I first parked my car in the spot marked ‘Rod’
We often measure lifetimes in decades.
I’m in my fifth, my kids in their second.
The 20’s, 30’s, 60’s pick your favourite and off you go.
What will become of the 2010’s?
None of this is what blew me away.
I was talking with a patient who has cancer.
She is dying of the disease.
It is 10 years since she was first diagnosed and the fight began.
Indeed – you might consider that in the time period I have been knocking around in Doncaster, she has also been walking the boards, through investigations, diagnoses, prognosis and treatments. I have been bumbling along, living my life, growing my family and she has been living with the uncertainty of cells that have gone awry, moving through her body & likely, despite what we now know about molecular and cell biology, the consideration of some misdeed, as Susan Sontag related – first TB, then Cancer then HIV and now, Dementia – the diseases of morality, or perhaps, better, the diseases we think of when we think of God and retribution… What have I done to deserve this? Can’t I just get-on and live my life? If you travel to West Africa and talk to the populations affected by Ebola, it won’t take long to find someone who will associate the disease with upsetting God or the deity, a payback into suffering. And yet, we all know we are subjects of chance, of happenstance, of occurrence. I happened. It was. Just. Random acts of kindness we accept as making us feel more at home, disparate acts of illness, disease or tragedy, we try to find a meaning. We search. We likely blame, assign culpability, focus our energy and why? Why is because we have such short lives, our passage through the cosmos so insignificant, love is eternal but our impact on the world transient. We seek meaning, we seek a constant, something to cling-to, a mark to leave after we have passed, whether a love-heart carved in oak or a disintegration, condensation wiped-away. We apportion blame, we take responsibility, we weigh-up the good and the bad and the uncertain. No one really knows, no one has a clue, it is all reading in-between the lines; hoping that we’re on the right track.
- 20. #30.
4. 10 years
I wasn’t sure how it would go. I was a little anxious.
Today I spent a few hours working as the medical registrar.
This was part of my pay-back for J helping me a few months ago.
I didn’t know what to expect.
I didn’t know whether I’d be up for the job.
It was funny.
In medicine, we spend years working through different phases of training – acquiring skills, talents and techniques that are useful at the time. Some of these we carry with us – how to listen, communicate, think outside the diagnostic box; others, which fade with time.
It is these latter skills that had me most worried.
I knew I’d be OK if I had to lead a cardiac arrest – I did this a few months ago, although not with the balletic finesse of my registrar years…
For those of you unfamiliar with the chronology of a doctor – here is a template:
1998 to 1999 house officer*
1999 to 2002 senior house officer*
2002 to 2007 registrar*
2007 to date consultant
*We get told-off for using these old-fashioned designations; as this is my blog, I don’t care.
That is the run-through. Some people take a different path; for me, I didn’t know what I wanted to do when I finished medical school & as the lines of the song go, I still don’t.
The skills you lose when you become a consultant – in my case, one who spends his time listening-to and supporting older people are the practical procedures – taking blood, siting cannulae, central lines, temporary pacemakers and chest drains.
I know if it came to it and tomorrow I had to do any of these procedures I could muddle through; perhaps not with the same aplomb as 10 years ago, but I’d be good-enough (which in British medicine – the Bolam* Test, is all you need).
Over a few hours I encountered a stunning array of patients and diseases; old and young; meningococcal septicaemia, leukaemia, renal failure, pneumonia, delirium, dementia, overdose, heart, lung and liver failure, migraine… the list goes on. We sometimes forget how broad is the panoply of human disease, how many dimensions there are to suffering.
Different to the role of a consultant, as a transient registrar, I could spend time talking with patients – time that in my usual life is so squeezed it is like living in a pressure cooker. In this job, with my trusty bleeper attached to my belt, I was adrift in the system, no longer entirely responsible for my actions.
Sure, there was prioritisation, ordering and organising, but different to my day-job.
Crap. I found it fun.
I remember struggling with the transition from senior house officer to registrar – not because of the increase in workload or other challenges, but because of the loss of intimacy, the loss of me and the patient, us, together, within the ranks.
I know it was just for a few hours and I was lucky that nothing went wrong and I suspect none of the patients realised they were being supported by a much older version of a doctor than would normally have spoken with them.
As with my day-job, it was an honour. It was a pleasure. It was fun.
This is what we need to hold-on to when the bastards are getting us down. When the system is upturning our values, when the resources are finite and the demand overwhelming.
Could there be a better job than one in which we can connect with people during their time of need, of vulnerability and fear and offer a solution or a support?
I have spent so long recently crying over our beloved system, this was more like a time to celebrate.
*The Bolam Test – suggests that doctors need to be as good as the standard set by a ‘responsible body of medical opinion’ – they don’t have to be the best. (Although we all aspire to be the best – that is ego; a separate principle)
Today, I met an old lady.
To say old
Is no exaggeration
she is one year off 100.
She was lying in bed,
in blue and white
her skin soft,
fingers delicate –
shaped into a century-old pattern.
She struggled to hear
or perhaps better
What I was saying.
She looked across at my colleague,
at the end of her bed;
Her awareness intact.
6. 1559 days
In the hectic world of acute hospital care, 1559 days is a long time.
This was when the last patient on Mallard Ward at Doncaster Royal Infirmary experienced a severe hospital acquired pressure ulcer.
I can remember the patient. I was her doctor.
Pressure ulcers, which used to be called bed sores are painful, disfiguring injuries to the body which are caused by inadequate attention to care or less than perfect medical and nursing treatment.
Pressure ulcers have a physical cause – they were identified as early as 1859 by Florence Nightingale, “If he has a bedsore, it’s generally not the fault of the disease, but of the nursing.’ This at the height of the Crimean War.
Now, in the 21st Century no person should experience a pressure sore or ulcer.
In Doncaster and Bassetlaw Hospitals we have achieved something amazing – our patients have experienced the longest spell without a single individual experiencing such an injury, no matter their age or frailty in the department of Orthopaedics and Older People in the past 365 days.
A year during which patients old and frail, injured and vulnerable, from ages 18 to 109 have come under our care, a year when we have faced challenges of capacity and demand, infection and illness, all-comers arrive at the doors of our Emergency department, and all are provided the same exemplary care.
And this is incredible, this is a tribute to the hard work, dedication, caring and attention paid by the staff of the organisation, who view each person as an individual, who consider the uniqueness of the young as much as the old.
Some of our wards adopted the principles of holistic, person-centred care earlier than others.
Most incredible has been Mallard Ward, our specialist unit for people experiencing delirium and complications associated with dementia.
No patient on that ward has experienced an avoidable pressure ulcer since on the 13th of July 2013. We are not proud of this figure and we can still recall the old lady who, frail and debilitated in her bed, acquired a pressure ulcer to her ears from an ill-fitting oxygen mask.
Each person is unique and every patient is an entire universe. This is the approach we take to care.
If all wards in every hospital followed similar principles of excellence and commitment, healthcare would be very different – this is our goal, to evangelise, to convert those who are distracted by preoccupations and irrelevant considerations to the belief that excellence in care can be attained, not through investment or technology, but through care and passion.
7. A response to Henry
In yesterday’s Guardian, Henry Marsh, the former neurosurgeon, wrote a short piece commenting on the treatment by the legal system and the media, of transplant surgeon Simon Bramhall – otherwise known as ‘SB’.
Marsh expressed his opinion that although Bramhall had been stupid to write his initials with an argon laser on the liver of a transplanted patient, as he says, ‘It is worth noting that Bramhall had done this in full view of all of the surgical team.’ As if it wasn’t just Bramhall who was culpable but all the other surgeons, anaesthetists and nurses present in the room.
Marsh continues with a defence of surgeons in their requirement to detach sentiment from emotion and the overall pressures of being a doctor in an overstretched 21st Century NHS.
It was the ‘view of all the surgical team’ that got me.
That and the consideration that an over empathic surgeon might be a bad, if not dangerous thing.
I have met many surgeons in my career and the only surgeon I would hope to have transplant my liver or any organ would be one who is not only highly skilled but also highly empathic.
Do you want someone rooting around inside your body, making life and death decisions who does not have a moral compass? After all, isn’t morality a bedfellow of empathy, in other words, humanity; otherwise, get rid of the surgeon and bring-on the transplant bots.
It was this and the team, who either silently stood by and said nothing as SB wrote his initials, complicit in their passivity or, who thought so little of his act, seeing it as within the realms of daft but not terrible, to say nothing.
This makes me think of the Korean Airlines pilot allowing the plane to fly into a mountain because the team were all too afraid to point-out the inevitable to the captain… Mitigated language as Malcolm Gladwell says – ‘Erm, I think we might be a little too close to that…’
Livers, organs in general and surgery whether the most expert or the seemingly trivial is not, at least in a modern NHS the accomplishment of one hero operator. It is the combination of tens, often hundreds of skilled individuals all working together in what is in general considered the ‘surgical team’ – and it is team that to me is inconsistent with ‘SB’ – he didn’t write ‘the surgical team at…’ but rather, his own name, forgetting the involvement of all the other people, forgetting the person who has died, their families and dependents, forgetting the patient.
Modern health and probably, social care, can only exist within the complexities and challenges we face through team working. As the King’s Fund described in a 2011 report, there are ‘No More Heroes’ in care.
Empathy is essential to teamwork, whether you are a top-notch surgeon, battle commander or airline pilot. Without empathy, you tend to have dysfunction which diminishes the outcome of a team’s ability to perform.
Great teams – whether in football, rugby or science succeed by the combined efforts of the whole, not the talent of a star performer.
The act of writing ‘SB’ wasn’t that terrible, it did the liver or even the patient no harm – we don’t know what effect this will have on other people opting to donate their livers or enter into discussions with transplant teams in the light of this case, yet, it talks to what is great, what is the only way the NHS will continue to grow and survive within the constraints of modernisation, integration and progress – that is, humility, empathy and collaboration.
8. A tale of two times?
Will we in 30 years look back on today fondly?
Humans are great at forgetting bad experiences. This explains the effort and organisation involved in remembering the past – Armistice Day, 9/11, Holocaust Memorial. We re-live long-ago events to keep them alive in our consciousness and prevent the forgetting.
Physical pain is usually forgotten unless it is backed-up by a chronic impairment – appendicitis versus arthritis.
We are experiencing incredible times.
Modern technology, medicine, 21st Century concepts of equality, equity and fairness are more embedded in our society than ever before. Most of us live long, productive lives – we see our children and grandchildren growing into adulthood.
It isn’t all that good.
If you look at the hospital – we are achieving improvements that might never have been conceived as possible – improving safety, quality, experience; yet, I have never encountered as many exhausted people teetering on the edge of burnout.
We have wonderful international relationships between most countries in the world. Today, I could catch a plane and fly to Japan, Cuba or the Maldives, if I wanted to and had the cash & passport.
Yet, we are on the brink of the international abyss with the bad man in Washington rocking boats and undoing years of development and growth.
Yesterday I heard of children murdered in Myanmar. Tomorrow it is likely to be somewhere else.
The sea is becoming clogged with plastic; marine animals and pelagics overwhelmed by microscopic particles of broken-down rubbish. Smog, fog and global warming are mixed-in with distorted climatic half-truths and scientific Refusenik babble.
The best of times yet, likely the most precarious.
I saw a quote on Twitter last week – it described the water in the boat being the cause of it sinking rather that which is outside.
This I suppose is the lesson.
We must keep going.
We need to find resilience from somewhere.
We can’t allow the NHS, international relations or the planet to fall apart.
Shall we keep baling the water?
We do not have a choice.
Let’s use the good things – the pervading art, science, technology, humanity and happiness to maintain us.
Pulling together we can overcome the puniness of our individuality.
Not sassy, silly or enlightening.
When things happen all at once, with a sense of urgency, that, if you’re not careful, can overwhelm. (Our Iceberg is Melting).
These are some of the acutes you might encounter in a UK hospital.
They are a shade off emergency –
When there is an emergency, you had better stand-back – blue-light, cardiac arrest and battle-stations.
Acute, is a degree less critical, less threatening to life,
But still very serious.
It is when acute blends with care that, like hot and cold waters mixing in the sea, there is turbulence; eddies of not quite hot, not quite cold – no, not tepid, you mustn’t get complacent!
Acute, is pulling-out the stops, getting things done straight away – pressure, it is the dumplings exploding in the boiling broth, the edge of Compassion Fatigue and exhaustion.
It is when it cannot wait, when you must get on with the job as the workload is mounting – the ambulances are queuing, the referrers on hold and threatening to go elsewhere; the customers in revolt!
Acute is when soon or shortly is no good, when ‘in a minute’ is perceived as procrastination, poorly prepared, disorganised; inadequate. NoW!
Call the porter, the technician, phlebotomist, assistant, move, move, move – think Navy SEALs under fire, running fast, the fire-fight hasn’t broken-out yet, but things can go awry at any moment.
It is exam-time pressure that has become part of life, a component of nine to five, when you better get a move-on or there will be repercussions!
Not enough time to chat; eye-contact is a distraction; calm, smooth, flowing; the melody of human interaction is left on the side-lines and you had better get on and complete the discharge letter, order the medicines, call the transport, the family, the care home; ondale! No time to waste…
Like the blur you sometimes see in movies when the central character is frozen and around them is a blur of movement; I am thinking Donnie Darko. I am reaching-out to the split that sits at the heart of a personality breakdown.
The pressures, tectonic plates pulling you apart, requiring resilience that is not always forthcoming.
Again and again and like a treadmill, the processing keeps on going.
Acute, now, get on with it, and before you do this, do that, and here is another thing, and the pile of to-dos gets so high you do the urgent and important and the other aspects of the role are demoted.
Hand holding, discussing the olden times, family, a joke, a smile; cup of tea – listening, learning, hearing, tasting – sensations, moments that add-up to experience.
You can’t step in the same river twice.
You can’t lie in the same hospital bed for more than the average length of stay which in your case, for your disease, disorder or condition is 3.76 days.
I am now thinking that A-ha video – the one that is all pencil drawing.
Smudges of grey as the light fades.
Let’s see if we can’t reinvent,
If we can determine a better way to care,
To provide hospitality.
I remember a few years ago asking a group of medical students whether patients should have the same experience as those staying in a hotel.
Strangely the students thought you couldn’t – perhaps even, shouldn’t, provide the same standards of care and support as say the Hilton or even the Holiday Inn. No, the NHS, cash-strapped and pressurised, acute in care and nature.
My belief was the opposite – hospital care should be the model that the hotel industry follows (it certainly is on Mallard Ward) – our standards of improvement, innovation and creativity maintain a perpetual culture of growth and love.
Acute is a threat to love.
You can’t love someone when the clock is ticking.
You need somehow to separate the experience, the compassion and caring from the process, the deadlines and targets;
I don’t have an answer to this beyond my usual… Person-Centred Care – The Golden Rule, Would I appreciate a trip to the X-ray department in the middle of my minestrone soup? Multiple needle-pricks at three in the morning, an enema when four other people can hear the outcome? A hospital gown where by bottom is showing and rushed to the ambulance to carry me not home?
If not for me, then not for my patient.
I see my patient as me.
Acute leads to the patient becoming an object. An item whizzing past on a conveyor belt.
Think Brucie and the Generation Game – ‘Clock Radio… VCR… Teasmaid… Cuddly…’
You can still operate at high speed with compassion, with care.
Remember… more haste, less speed?
Remember… look left and right, then cross.
Don’t just jump-in and not live to regret it.
10. Advance Care Plan, Human Rights & I want what I want
Most of us take our human rights for granted – that is, those who I imagine might read this; where and how to live, who to love and so on.
In the past I have written about advance care planning – this is working out what you want to have happen to you in the future.
There is a tremendous amount of work taking place across the NHS examining ways to ensure that people plan, for we know, when people are involved with choices about their care and treatment, the outcomes are better;
If you want a knee replacement, are motivated to have the surgery and have an orthopaedic surgeon who does a good job (without infection, DVT or other technical fault), the outcome is likely to be good. You are likely to have a second lease of life, free from pain, with increased independence and quality of life.
If someone orders a test or a treatment that you don’t want or do not even understand, the outcomes can be bad; people are generally able to accept the unpleasant side of medicine if they see the bigger picture, if they can conceptualise their temporary pain or suffering as part of a bigger goal – cure, improved symptoms.
When people are treated like objects, left out of the discussion, when the NHS engages with folk as if in a continual state of crisis or emergency (few of us are upset if a surgeon saves our lives when we arrive unconscious after a road traffic accident – these are times when preferences play second-fiddle to necessity), but, most situations are not like this, most of the time, a little bit of sensitivity, kindness, empathy and compassion can slow-down the interaction and afford a person a moment to reflect, ask questions and get their head around the issue.
Advance care plans fit within this schema.
There are some things I would or would not like.
I don’t think I would appreciate being kept alive on a ventilator indefinitely as happens in some countries, if I experience a massive stroke; for example.
Part of the problem is, none of us particularly enjoy imagining ourselves in horrible situations – like the Freudian concept of death. It isn’t a nice place to go. Even when we do talk of death, for example, in relation to life assurance – we tend (or at least I) tend to focus on the up-side – the cash my family or favourite charity might get in the event of my untimely demise.
As age and chronic disease encroach, as we encounter limitations in our abilities to engage with life, perhaps combined with a good innings – whatever that may be; threescore years and ten, 80, 90, 100 – adequate family and friends to hold on to your memory, an edifice, mausoleum, mark in the sand, whatever – it is perhaps easier to consider what we would have or have not. We might not want to live in a care home, we might not want a PEG tube, chemotherapy, surgery, hospitalisation. Again – none of this is straightforward or easy to get your head around – it isn’t the way evolution designed us.
And what of the advance care plans that we construct for our husbands and wives, mothers or fathers – the situations when those we love exist in states beyond which we would conceive are enjoyable, satisfying or fun.
Here is a sketch of a life I might not like:
Nursing home; 25-watt light bulb, bedroom, air mattress, indoor existence, air stifling; closed window, bland & pureed food that is not of my choice, bed-bath, strip-wash, catheter, insomnia, anxiety, enema, depression, monotony, noise, itch that can’t be scratched, day after day after day…
A recent article in the New Scientist revealed that some people with locked-in syndrome; like Bauby in my last blog, those people whose lives are potentially consistent with the description above, who cannot move a muscle, who cannot even blink, through new techniques to interpret brain-waves, have revealed that they are happy – that their existences are far less unpleasant that we might envisage;
There is a theory (constructed by us able-bodied souls), that being in such a state of perpetual physical torment or incapacity has a psychological effect that induces euphoria. Where our standards slip as to what is good, what is fun.
No one knows.
And this is the problem with advance care plans made by those who are capacitated, free from dementia, infirmity, us, who plan for our relatives during this time, when they cannot express what they want; or even for those of us who have the foresight to create such a document ahead of time – who is to say that the state we perceive when able-bodied is as bad as it looks;
This is the human rights. I want what I want now and I want what I want when I want it and – I want to be able to change my mind as often as I like as my mind is mine, as is my body and no one can tell me what I like or dislike, or want, etc.
Can we ever have such a thing as an advance care plan that is consistent with this reality?
Surely our will to live will always be too strong; evolution hasn’t designed us to easily give-up on life.
Something to think about.
11. alea iacta est
So, said Caesar as he crossed the Rubicon in defiance of the Senate’s instructions.
Things happen and afterwards, the world is different.
I have written about this before in relation to Cartier Bresson’s Decisive Moment, cardinal de Retz and older people. The moment of determination that shapes the future.
I also wrote about my decisive moment a couple of months ago following an unsuccessful interview.
Life is like that; there are moments when events take place, when roads diverge.
Sometimes the painful path is the better one.
Sometimes a line must be drawn, for without taking a stance or a position, the wrongness is allowed to continue, to perpetuate.
First they came for the Socialists, and I did not speak out…*
This is a pattern I have witnessed over the years; person by person, first the good then the mediocre, the activists then the bystanders are taken away, selected; shipped-off (gobbled-up by talent hungry establishments), in the 1970’s they called this the Brain Drain, in the 21st Century we call it reality.
I have felt it coming, sensed the wind, only now it is so powerful, I cannot resist; it is a storm. A tumult.
And during times of challenge we can stand and fight, run and hide or step aside. No option is the easy way out; 750,000 soldiers marched through beleaguered Belgium in 1914. Then as now it is all too easy to be swept-up, carried-along.
And that is why a position must be taken.
That is why, when all that can be done has been done, when you have expressed your opinion, said your piece, shouted from the rooftops and those in positions of authority, of influence have chosen to turn away from your entreaties, you must move-on.
So, said Caesar as he crossed the Rubicon in defiance of the Senate’s instructions.
Things happen and afterwards, the world is different.
I have written about this before in relation to Cartier Bresson’s Decisive Moment, cardinal de Retz and older people. The moment of determination that shapes the future.
I also wrote about my decisive moment a couple of months ago following an unsuccessful interview.
Life is like that; there are moments when events take place, when roads diverge.
Sometimes the painful path is the better one.
Sometimes a line must be drawn, for without taking a stance or a position, the wrongness is allowed to continue, to perpetuate.
First they came for the Socialists, and I did not speak out…*
This is a pattern I have witnessed over the years; person by person, first the good then the mediocre, the activists then the bystanders are taken away, selected; shipped-off (gobbled-up by talent hungry establishments), in the 1970’s they called this the Brain Drain, in the 21st Century we call it reality.
I have felt it coming, sensed the wind, only now it is so powerful, I cannot resist; it is a storm. A tumult.
And during times of challenge we can stand and fight, run and hide or step aside. No option is the easy way out; 750,000 soldiers marched through beleaguered Belgium in 1914. Then as now it is all too easy to be swept-up, carried-along.
And that is why a position must be taken.
That is why, when all that can be done has been done, when you have expressed your opinion, said your piece, shouted from the rooftops and those in positions of authority, of influence have chosen to turn away from your entreaties, you must move-on.
12. All I know is that I know nothing…
Socrates supposedly said this & I love his honesty.
I can remember, it must have been thirty-odd years ago, during a history lesson at school. We were discussing the destruction of the Second Temple in Jerusalem – I had an idea, an answer to the teacher’s question that I couldn’t contain; up went my hand and off I set, babbling.
At a certain point, perhaps by the third or fourth sentence, I realised my enthusiasm outweighed my knowledge, and rather than continuing, I stopped, announced, ‘I’m sorry, I don’t know what I am talking about,’ and, sat down.
This has happened to me a couple of times throughout my life and on those occasions, when I have professed my ignorance, there has usually been a momentary silence followed by people getting on with things.
Had things gone differently, and I’d continued spouting nonsense, it is likely the outcome wouldn’t have been that different. Life is like that. We say things and the things that matter are lost, with those cringe-worthy moments, immortalised. It is a lottery.
And my point?
My point harks to the teachings of first Socrates, then Maimonides with his, ‘Teach thy tongue to say I do not know,’ – the value of honesty; an echo of the Greek sentiment, followed centuries later by Bruce Lee, echoing Confucius with, ‘Empty your cup, so that it may become filled.’
What is the common-denominator?
Honesty – with self, the situation or others.
The realisation that pride, falsehood, deception and deceit are about as bad as it gets. (And, in ancient times, considered worse than blasphemy.)
Within this there are two realities, one likely worse than the other –
The first, the Machiavellian, those who cheat, connive their way from one promotion to the next, treading on others in order to gain position, promote their cause or place in the hierarchy; the dirty schemers, manipulators; they are perhaps the worst. They besmirch society and depending on the sophistication of their psychopathy are able to work at speed and with an effectiveness that is dazzling.
The others, no less benign are the wondrous mystics, the starry-eyed believers who accept the doctrine of their beliefs as if there is no possible alternative; they are the fanatics, the bible-bashers and madmen who pursue impossible goals and often pay a heavy toll when the system deconstructs, like John of Leiden, collapsing upon themselves.
So, fear the faker.
Beware the manipulator, the Boris Johnson. They know what they are doing, and everyone pays a price.
You could have called yesterday’s blog something along the lines of… Long-lie – the consequences of loneliness.
There was some discussion on Facebook as to whether this was a societal or technological problem, or, both.
People have been writing about social isolation for centuries.
I think back to The Count of Monte Christo, where Noirtier de Villefort – the grandfather of Valentine, the heroine, is let unable to communicate after a stroke, other than through blinking. A literary predecessor of Jean-Dominique Bauby’s, The Diving Bell and the Butterfly.
Many blogs ago I wrote about Alexander Trocci (the Glaswegian Beatnik) and his description of the human condition.
It seems that we are moving more and more towards this existential isolationism.
Last night, I watched the Oasis documentary, Supersonic. It was a great re-living of the 90’s. Some of which I could remember – although chunks are missing from my recollection.
In the film, they highlight the concert at Knebworth in 1996 with 250,000 people in a field singing along to Champagne Supernova. This was before internet dominance and the iPhone, before we considered technological solutions to everything – how to prevent a long-lie… wear an accelerometer. How to stay in touch… Skype, Whatsapp, Twitter, Facebook.
This was likely even more meaningful to me as I watched an iPlayer documentary before the Oasis film, about schools and schooling in Scotland since the 1500s when John Knox led the Reformation and his Book of Common Order outlined the beginnings of standardised education.
The point isn’t about Mr Knox or Liam or Noel, but about the changes in society that have led us to where we are today.
In the 50’s, 60’s and 70’s there was so much more playing in the street, engaging with neighbours, society; I guess – there is likely to be a component of nostalgia in this, but predominantly, the explosion in single-person households, in people living alone, not talking to another soul for days on end, to the extent which this happens in 2017 is unique.
This metamorphosis in our ways of living threatens the fabric of health and social care system.
The solution today to an older person who has fallen and is socially isolated is to send them to a care home. There they will be looked-after; there they will have company. People to keep them safe, feed them, ensure clean clothes and cups of tea.
Some care homes are fantastic places and indeed are the solution to the very lonely.
The numbers of older people within this model who will require care in the next 20 years are too great for our system to manage.
Today, care homes are closing because of staffing and funding challenges. We undervalue this work as we undervalue the role of all people involved in health and social care; the government has over the past five years devastated social care – cut upon cut. What do we value?
Our phones, the internet, Amazon Prime?
Back to living alone.
Today, more people live in single person households than at any time in human history. You might struggle to get-on with your family, but, at least they are someone to talk to. At least they are someone to determine if you are down or dejected or poorly.
I do not see any systemic solutions to these changes; sleep-walking we shuffle towards the future.
I mentioned B:Friend yesterday; I have seen recent posts on Facebook showing care homes that are providing accommodation for students, where older people are welcomed into society and their importance appreciated. Young children spend hours in the company of people in their 80s and 90s.
Like the environment, let us not place all our eggs in one basket.
Most, at least those in the West who are gas-guzzling and landfill filling either choose not to think about the planet, or, if they do, prefer to assume that a technological solution will be found to the bleaching of the coral or the poisoning of our oceans and atmosphere.
If we follow this path, assuming tech will save us; provide us with live-in robots, computers of wheels, electronic cats and dogs, we will have missed the point.
We still have a way to go.
14. And the award goes to…
‘Congratulations Dr Kersh, you and your team have won the award for best Quality Improvement Plan 2020!’
We hear things like this from time to time.
Awards in healthcare are funny.
Essentially, if you don’t apply, you have no chance of winning. If you apply, your chance of winning is dependent on the competition. None of this necessarily reflects the actual effectiveness of what you have done.
Much of this can be condensed to two questions: Effectiveness – how meaningful is the improvement? And, Sustainability – how long have you been improving for?
With the former, if the improvement is meaningless to patient care and the award supports patient care, you haven’t really improved, equally, if the improvement is only ongoing so long as you are beating the drum, it is not sustainable and unlikely to spread.
Last week, I had a moment with the Costa people.
I was standing in the dining room at Bassetlaw Hospital – two of the coffee people were servicing one of the machines while I waited for my latte.
Costa person one opened the machine and all the sugar sachets fell on the floor.
Costa person two said, ‘They always fall out, there isn’t a lip on the door.’
Costa person one, ‘We’d better tell the continuous improvement team about that.’
And, there was I momentarily mesmerised by the interaction.
This was followed by an email I was privy to reading at the end of the week, sent by one of my colleagues in relation to a call to participate in Quality Improvement (QI).
‘I can’t believe the management can find the money to waste on such bs. All I want are my notes in clinic!’
You see the issue?
One system – the Costa, has somehow embedded, or at least introduced QI into their culture, the other, certain elements of the NHS (most often senior doctors it seems), don’t see the wood for the trees.
The response to the email was the Winnie-the-Pooh quote from Christopher Robin bumping Edward Bear down the stairs.
I thought this quite clever. But, not necessarily a sustainable way of changing behaviours or attitudes.
You see the problem?
This is all compounded by awards –
‘Do what we are doing as we won the award for best xxxx,’ ‘Our way is the best,’ this becomes what Bruce Lee worried about in relation to his martial art Jeet Kune Do – a Classical Mess (for this reason, he initially didn’t want to give it a name – The Way that is No Way).
Once a name is ascribed to a system or process and once awards are notched-up the organism starts to calcify, growth ends and any initial value becomes diluted.
Bruce Lee in the 1960’s applied QI to his method for self-defence – he famously said, ‘It is not daily increase but daily decrease – hack away the unessential!’
Perhaps this is a lesson we could adopt within the NHS.
15. Are there any Jews?
This was not necessarily how the class began,
But it was words to that effect.
So, described my brother his experience of
Secondary School in Scotland in the 70’s.
I can’t remember much about my early-years schooling, although,
There must have been some similar selection process
For me, between 9 and 930 every morning, I would head-off to the Jewish class, for prayers and lessons, when the rest of the class would stay behind and say the Lord’s prayer and sing about Jesus. This was late 70’s Scotland.
I don’t know what happens nowadays.
When I asked my son what happened to the non-Christian kids in his class, whether there was a modern-day selection to weed-out the Atheists and Muslims from everyone else, he explained no, the others just hang around and join-in.
I have vivid memories of sitting in the Giffnock Primary Jewish Class, with Mrs Gamzu at the helm, her carefully arranged grey-black hair held in rigid waves and her Manchester accent dissonant with the South-Side twang of the children.
I remember also the separation at Christmas when the other children were taken-off to pray, celebrate baby Jesus, as we, the Cohens and Levy’s stayed behind, allowed to play board-games in the school hall.
I never sensed anything wrong with this divide; indeed, it perhaps even explained things a little to the pale-skinned Glaswegians why they had such a dark boy in their midst; I was introduced to the nickname chocolate boy at an early age, Jew-bug followed, but it never seemed that bad.
16. Are you looking at me?
I am trying to imagine
What it is like
to fall into a
into a black hole.
can be much fun,
I gather with the wormhole, there is, even though very remote,
the possibility of traveling in time and space,
with the black hole,
It is just
Last week, as my trip to Israel was coming to an end I visited the Israeli Children’s Museum in Holon; my brother, his wife and my children and I, were led through an exhibit called Dialogue in the Dark.
This is an experience of complete and utter darkness, where you spend an hour, guided by a visually impaired instructor through a cityscape, boat journey, jungle, market, living and sound room, finishing with a café (chocolate, Bamba and coke, all for 20 Shekels). In the darkness. No light, you see. Not black hole, but, insight into the darkness, getting to use your senses and talk with someone about their experiences of life, of stigma and empathy, kindness and inconsiderate over-attention; guide dog and Danny collecting his son from kindergarten.
No, this isn’t like a black hole, it is just black (specs, phones and other electronics are all locked away before you enter).
Wormhole is different –
This is when you are stretched into infinity.
I don’t even want to pretend I have any real sense of what either are, just as I have no concept of visual impairment or blindness.
The important aspect for me was however, the sense of loss and disorientation. The absurdity that we take for granted through our senses.
17. At nurse’s discretion
I have been struggling with this recently. Or, at least, some of my team have found this a tricky instruction and have become concerned.
I’ll explain the context.
Most recently this arose in relation to the care of some of my patients on the ward.
You see, when a person passes through the doors of a hospital and becomes a patient, several things happen to them. Not only are their clothes exchanged for pyjamas, their shoes for non-slip totes, and their lifelong medicines locked away, they are also subject to a whole array of safety measures and assessments – checks to determine the presence or otherwise of pressure ulcers, weight, urine, stool consistency, oxygen levels, temperature. You name it and so long as it is within the remit of physiological scrutiny, we will check it.
Of these assessments, one of the most universal is monitoring of observations, or, ‘obs’ for short. This entails checking temperature, pulse, blood pressure, respiratory rate, and oxygen saturation twice a day.
Patients who are sick or unstable have the frequency of the obs increased and, with escalation, an individual can end-up on the intensive care unit where these parameters are continuously checked.
This is a great thing and a useful way for the system to ensure that no one is missed – for, variation from the norm, for example, a low blood pressure and fast heart rate can be a bad sign requiring urgent treatment.
Sometimes, despite worrying signs, doctors haven’t been called, or, when they attend, haven’t realised the severity of the situation and allowed deterioration, at times, death. (In the health and safety jargon, we call this ‘failure to escalate’)
Mostly within modern NHS hospitals staff and teams are very good at monitoring and adjusting measurements.
And I do not have a problem with this. It is a safety-net.
Yet, sometimes observations can be a bit too much. They can get in the way.
A couple of years ago we moved to measuring blood pressure using the old fashioned aneroid manometers – instead of the automatic ones you see on TV or might have at home. This requires a nurse or healthcare assistant to make physical contact with a patient, touch their skin, feel for a pulse and listen for the Korotkoff sounds. This has reduced the incidents where people on autopilot record HR 35 BP 60/30 and move on to the next patient without thinking.
Despite this, sometimes observations are unnecessary. After all, if an older person is deemed to be fit and ready for discharge and they are waiting for a bed to become available in a care home or for their home-care to start, and, they are fully recovered, do they require 12 hourly monitoring?
You could argue that there is always the chance that something will go wrong and it is best to err on the side of caution, yet, we know from experience that performing tests and investigations on people when there is nothing wrong can lead to false positives, anxiety and over-treatment.
I am not aware of any evidence suggesting harm related to routine observations, but that is conceivable.
Other patients, the group I found myself becoming involved with the discretion question are those on my ward who have either significant dementia or delirium.
At times, patients struggle with the intrusive nature of observations. A caring nurse inflating a tight balloon round your arm, when you don’t understand the context can cause distress. Usually in these situations we document that a patient has refused and move on. It is only very rarely worthwhile persevering with an anxious or stressed patient to obtain their blood pressure (sometimes necessary if it is acute illness that is causing the confusion or disorientation).
In the instances of an otherwise well patient (or a patient who is dying, in which case, monitoring blood pressure and temperature are unnecessarily invasive), who is confused and fearful of the interaction, I usually, following a discussing with family agree to suspend to obs.
And this is the problem.
I could say, stop the obs altogether, they are doing more harm than good – but what about a situation where one of my otherwise well patients develop an infection – I wouldn’t want to miss the opportunity to consider treatment (which could be refused or rejected by the patient, but that is also another matter).
The alternative is to do what the system advises and stick to routine with 12 hourly observations and ‘refused’ documented.
This doesn’t sit well with me and my preference is to request that nurses, not do routine observations unless they are specifically concerned i.e. at their discretion, after all, nurses are healthcare professionals, most of whom are able to determine if someone is well or sick.
Some of the nurses have struggled with this, feeling I am placing too much responsibility on their shoulders. My response is that I have complete faith in their shoulders.
It is interesting.
Doctors make clinical decisions all the time. Indeed, that is perhaps one of the purposes of a doctor or an advanced practitioner – to train to a level at which they can produce important decisions continuously, nine to five, day after day, moving-on from one tricky situation to the next.
Why is it that only doctors and advanced practitioners (by this I mean nurse, pharmacy or other practitioners) make these tricky decisions – it this not something that can be learned and shared? Understanding risk and clinical uncertainty amidst the variety of human disease and experience is within the grasp of most of us.
Not something to be taken lightly, but an area which far more people are likely to achieve if provided adequate training, support and supervision.
A fundamental of decision-making is the confidence to make that decision, without allowing it to eat you up afterwards.
After all, what is the worst that can happen – a nurse will check my patient’s blood pressure and they will either succeed or fail, depending on the will of the patient and the prevailing circumstances.
I don’t want anyone to feel awkward and the conversation I had with the team has led me to the realisation that if there are concerns relating to this it is not enough for me to tell people to pull themselves together, but, perhaps more support from me in the process would enable this form of advanced, person-centred care to become more standardised across the hospital.
I welcome any thoughts on this.
18. Barbara Robb – Sans Everything
Yesterday, at the Dementia 2017 Conference in London I heard one of the most stunning – both devastating and uplifting stories in years.
Claire Hilton, Consultant in Old Age Psychiatry presented Barbara Robb’s story describing her battle to improve conditions for long-term residents in psychiatric hospitals in the UK in the 1960s and 70s.
Claire screened an excerpt of the 1968 World In Action documentary which revealed, possibly for the first time the unimaginable horror inside a British long-stay psychiatric hospital towards the end of the 20th Century.
You can watch the film, Ward F:13 here.
Barbara Robb, a psychotherapist and campaigner born 1912 in Yorkshire was contacted by Amy Gibbs, at the time an inpatient at Friern Hospital in London. Gibbs introduced Robb to the appalling situation facing mostly older people during their prolonged hospital stays, which let to Robb both writing the book ‘Sans Everything’ which described the experiences of similar people to Gibbs and campaigning to improve conditions inside the institutions.
The book describes older people, mostly women, stripped of all sense of identity, human dignity, treated with disrespect and disregard for their humanity, locked in Victorian sanitaria for decades.
Following this, Robb battled with officialdom for recognition of the situation described in her book – facing challenge and opposition – most stunningly from Kenneth Robinson, the then Minister of Health.
It was only after the publication of the White Paper, support from the media and eventually Richard Crossman, the Secretary of State for Health and Social Security, did recognition grow – with the realisation that Robb’s book was not exaggeration or fiction, that the situation was as appalling as she described.
Claire ended her lecture by discussing some of the recent tragedies that have risen to prominence in the UK Health and Care Sector – Mid-Staffs, Winterbourne View, for example – where, through an over reliance or obsession with targets, process and objectification, people became dehumanised, and where, with the current extreme pressures within the system, fixating on waiting times, bed-occupancy and length of stay, we risk falling into a similar trope.
I have just now ordered Sans Everything, which appears to no longer been in print. I am left wondering why the NHS has not done more to celebrate Barbara Robb’s story.
Claire Hilton’s account of this story, Improving Psychiatric Care for Older People: Barbara Robb’s Campaign 1965-1975 is scheduled to be published soon.
19. Bit of an arse.
I don’t want to analyse the etymology of this phrase, yet, it is something that I have noticed cropping-up over the years.
I suspect people say this outside of medicine, but in the context of a doctor taking to a nurse, ‘he’s a bit of an arse,’ tends to suggest the person has behaved in a stupid, arrogant and condescending manner.
A Why did you call me at three in the morning to see an old man who is asleep?
We can all picture the situation; patient is upset, perhaps anxious or in pain, calls nurse, nurse is concerned for patient’s wellbeing therefore calls doctor; doctor is busy, it takes them a while to arrive.
By the time they get to the ward patient has drifted-off to sleep. The doctor is left with the dilemma – is the patient ill? Are they still in pain? If they are ill, should I wake them? If they are in pain, it can’t be that bad as they are asleep… A more circumspect analysis might lead to the consideration, ‘Oh, they are not conscious, their level of alertness is reduced,’ and, so on.
This is a situation where doctors can become arses.
Taking the stance that the nurse is unintelligent or not adequately resourceful, berating them for calling for help or whatever, if this then proceeds, you can create a situation where the ‘arse’ deteriorates to worse.
This in essence is a patient safety issue. Something I have not written about for a while, although key to the successful running of a hospital, clinic or care setting. This also relates to an interpretation of hierarchy – the doctor treating the nurse without respect, with disdain. More than this however, it creates a potential state of fear for the nurse who called for help. In many respects, this is bullying.
What does the nurse do the next time she is concerned about that same patient – will she risk calling the grouchy doctor? Will she hang-on until she is sure the patient is sick?
You can almost perceive the sense of anxiety within the nurse, determining what to do.
Many people will not even think this an issue – if the nurse is concerned she should call for support regardless of how she feels or the butterflies in her stomach. This is missing the point of individuals being humans with real-time feelings and emotions.
Usually these considerations will happen in the blink of an eye – within moments.
And this I believe is why we need to review the situation of arses in healthcare.
They are a menace.
They cause offence, they hark back to a time of paternalism and deference, they are an abuse of authority and, they can risk lives.
What is the solution?
Most likely, it is to call out the arses.
Certainly, try to reason, explain your motivation:
B: I called you to see Henry* because I was worried about his breathing, he said he was in pain, I wasn’t sure…
A: He appears perfectly fine. Do you know how many times I have been paged in the past hour? I haven’t stopped since…
B: Doctor, I am sorry, I am just trying to care for the patient. I feel you are behaving like an arse.
This might not be the most diplomatic way to resolve the situation and perhaps in the middle-of the night is not the best time, although, it is likely that the nurse, if sensitive – which is what nurses (and doctors) are supposed to be, will go home and worry about the interaction.
Do the arses realise they are being arses at the time?
I believe, for all my human frailties and flaws, I am not often an arse, and on the times when this might have happened, I am usually assailed by overwhelming feelings of guilt, remorse or regret immediately afterwards (indeed, I have discussed this previously).
Do all arses feel remorse? Are some even aware of their actions?
Perhaps, if we develop a screening tool this could be a useful way to determine who we should allow to enter into doctor, nurse, therapy or pharmacy training. It is central to team working, safety and wellbeing after all.
Only an idea.
*Henry is fictional
It is black.
It is everything you try to do but twice as slow and incomplete.
Even the sounds you hear are muffled,
Everything must pass through a slowing filter
That is uncertainty
And questioning again and again whether you are sure you are sure
And you know you doubt
You know you do not have a clue
But you keep going
The water is too cold, the light too bright, the day too long.
There is nowhere to go that feels right
That feels comfortable
Where you fit-in
Or feel at peace.
Not action or inaction that is best
The physical aches
The slow painful movements that are you springing to life
Your dreams that are a second layer of living
That are by no means an escape,
Just another form of existing
In a suspended life gone awry.
Where the static is greater than the signal
Where the heat cannot be maintained
Treading water is treading life
Feverishly paddling to maintain the status quo
Feverishly talking to maintain the conversation
You don’t know
There is no way to think this one through
To align the bricks so that they are right and the structure will not falter.
The obvious is obscure
The speed at which an individual can calculate the simplest of notions is…
A buzzing, a ringing in the ears that won’t go away.
That is there. Present and persistent.
Not realising that you are tired of the game.
Not understanding that there never really was any fun in the interaction.
A plus B plus C takes you nowhere.
Round and round
You return on yourself.
It is likely impossible to know or to truly understand
It goes on.
21. Boggle – Mellick style
I am going backwards;
Sitting in Esther Mellick’s kitchen.
Boggle was the game of the moment,
I think before Rumikub
For whatever reason
Identified as a Jewish game.
I don’t know whether this was clever marketing or perhaps some aspect of the play
That associated itself
With Glasgow Jewry.
It could have been entirely non-denominational for all I know,
But, cloistered in my little world of Calderwood Lodge,
Daily Record, Jerry Lang and Safeway,
There didn’t seem much more to know.
I can remember Esther’s dog, Glida,
One of my first secular Hebrew words.
And, Sydney, returning home from work,
Short sleeves, warm smile,
My mum chatting,
Gossiping but not.
And it is funny how these fragments become lodged in the memory,
Sinuous, between uneven teeth,
And, their presence is something good,
I could translate
of the bougainvillea
I could somehow
Take the colours
Them in a photo.
To me they are vivid summer.
23. Chess moves, the NHS & Being There
I shouldn’t start by blaming the NHS for this, as, I imagine chess is played across the world by people in all sorts of management positions.
If I do this; reduce here, shift that; increase A, stop B or C, then, they can go there and things will happen.
There is a cause and effect assumption within health and likely, social care, that if you go through the process; start with a good idea, you will end-up with a result.
The latter is true. You will always have a result. As to whether it is the outcome you intended is another matter.
The mechanistic – probably minimalist assumption that strategic gameplay with people and services is as straightforward as chess, remains a cornerstone of healthcare reforms, changes and developments.
The concept that the minimal viable resources available – aka our staff, are pawns is consistent throughout the system.
I don’t want to labour the analogy any further – I’m sure you get what I am saying.
No matter the degree of sophistication of the management in any organisation, the notion that people can be shipped around, moved or reallocated without consequence or repercussion is flawed.
First, because people don’t like it.
And, secondly, because most of the movers and shakers – the game players – strategists – senior managers, have so little understanding of what it is the pawns do, there is a huge underestimate as to the complexity of relationships and of role, to the extent that people are minimised to modules. Pawns.
The only meaningful strategic planning that I have seen and can conceive is where the management shift. Where they don’t do to, but do with, when they take-off their suits, roll-up their sleeves and join-in. When they in effect become pawns. When the work alongside the doctors, nurses or therapists. When they are faced with the good and the bad. When the time they would have spent in meetings is deconstructed – pulled apart into something more serviceable.
When the managers have undone themselves to such an extent that they are unidentifiable from the rest. And their job no longer becomes one of scrabbling for position or results (achievement of targets), but one of facilitating, coaching, maintaining and sustaining.
I have written before about Chauncey Gardiner. The character in Jerzy Kosinski’s ‘Being There’ – the gardener who becomes a candidate for US president. His approach to management and leadership is one of tending his plants. Making sure their basic needs are addressed; the right soil, light and water, and beyond that just being there. Being available, nurturing, supporting, comforting, understanding.
This is all to say that the problems faced by those providing the care, support and treatment are problems that can only be solved by those inside. That the management support can only be determined by those inside the work.
This is teal.
This is having a sense of purpose, accepting the responsibility to grow, adapt and evolve and being able to self-determine.
This is the hope for the Wellbeing teams (see advert) and likely, the hope for any services operational in health, social care or whatever area of our society that helps, supports, works-with and involves people.
24. Cognitive Dissonance (2)
My last blog was a little about Cognitive Dissonance – I am not altogether sure whether I managed to capture a good explanation, so here is a second attempt.
Let’s call it CD.
This is the position of you believing that Nigel Farage is the new Messiah and me thinking he is a Neo-fascist. (I have to admit I don’t know too much about him, but most of what I know I don’t like), but, anyway, this is not the point – the relationship to CD is that you believe something I and I believe something else. Our viewpoints are dissonant (as opposed it resonant – where we both think he is great or the start of the end) – the important part however is that the more I try to convince you that you are wrong, the more I show you examples that demonstrate the flaws in his behaviour, thinking or writing, the more this makes you believe you are right.
We are all faulty humans trying to get-on in the world; all with a weak grasp of reality that we are afraid of being challenged.
When you consider this, you also think – how do we ever know that we are wrong or right about anything when all we have to go on is our experience and our perceptions – yes, we can never be wholly right or wrong about anything, particularly when emotions, passions and the media are involved – we never know the whole story from all its different dimensions (this is one reason the only way to work in today’s world, given its complexity is in multidisciplinary teams)(that is, with diversity in all aspects).
We need to stick by our beliefs otherwise we wouldn’t get anything done.
If I want to cross the road I look left and right (the ?left again), then cross. If I am wrong that the road is clear I can get run-over, if I am right, which is usually the case, I am OK. If a car travelling too fast knocks me over, I am in trouble. If I don’t take the first step, I’ll never get to my destination.
You see – it gets complicated when we consider too many possibilities; we just need to determine that reality is what it is and go for it.
I might be getting a little tautological here. I am trying to simplify, but I feel I am confusing myself –
The point I am trying to convey is that we can never know if we are right or wrong; life is made-up of hunches. When we stop seeing the hunches as such and interpret them as Gospel, that is when things can fall apart – this is I suppose, fundamentalism.
Much of the evidence suggests that the more you try to convince a fundamentalist they are wrong, the more they are likely to dig-in to their beliefs and oppose yours.
Finding a way out of this situation is one of the greatest challenges of the 21st Century.
And why this on a blog about older people and dementia – well, the two overlap to me.
I may have dementia, but my interpretation is as valid as anyone else. Arguing doesn’t work. We can talk, we can share empathy, gain trust, work towards a common understanding, but you, coming in and stating your beliefs or impressions will likely make me angry, upset or frustrated.
People living with dementia are just people.
You can’t influence people by either thrusting what you perceive as reality in their face, by contradicting or disagreeing.
We need to use the soft arts – use the energy and continue the flow.
Is this a biblical approach – loving thy brother? Perhaps. We know that the opposite, tends to cause more turmoil, so, perhaps worth considering a return to what we know to be effective.
Today, I was asked for the first time, by someone who isn’t my patient, as to whether they should have a colonoscopy. This is, a fibre-optic camera inserted into their large bowel, preceded by powerful laxatives, sometimes accompanied by a hypnotic sedative and followed by, I imagine a smattering of wind.
I found the question interesting for a number of reasons, first, you might ask – if someone is scheduled to have such a potentially invasive investigation, surely there must be a good reason; it isn’t like a matter of taste;
‘Waiter, I’ll take the Chablis, oh dash, I’ll go for the Shiraz.’
Presumably, when someone is facing such a dilemma it is a matter of scientific judgement, or, at least something more concrete than a whim;
‘Mr Kafka, we have noticed that your red blood cell indices are a little low and that, combined with your recent bouts of diarrhoea have led us to conclude a colonoscopy would be an appropriate investigation.’
But no, from my understanding, the preceding history is of a vague, non-specific pain in their abdomen which has been investigated by multiple blood tests, ultrasound and CT.
The colonoscopy is really the next step in a logical process of ‘test until we find something.’
It is this approach that has me worried.
After all, no one is entirely normal.
All investigations and analyses are based on statistics, the normal population and in the case of radiological and endoscopic investigations, the skills (and sometimes focus/attention) of the operator.
Every couple of years I encounter a patient who asks for an excludogram – a test that can confirm they don’t have something – anything wrong. In general, the request is a ‘whole body scan’ – with the impression being that a) such a scan exists and b) I can easily arrange it.
‘Mrs Simpson, your whole-body scan was normal, you are in a state of complete (physical) wellbeing. Cheerio!’
It sounds daft when you hear it in this context, in reality, when an individual is faced with the demon of disease, a little like GK Chesterton’s allusion to God – when people are faced with an unanswerable question, they won’t take no answer, they will take any answer – this is behind the multi-billion-dollar alternative medicine marketplace.
‘Your tongue suggests black-bile, here, take these panda bone capsules, one a day for six weeks.’
It is also akin to the value of a map.
If you have a destination, a map is useful to help guide you, otherwise, as a tool, it is quite useless – if you don’t know where you are and where you want to go.
Back to the question… Should I have a colonoscopy?
I guess, when you look at it, there could be several possibilities. The most worrying of course, and the one which many people fear – do I have bowel cancer?
There has been a national screening programme running in the UK for the past decade which is dependent on people over the age of 60 sending-off a sample of stool for analysis – we call this faecal occult blood (or, FOB) testing.
When people are healthy, there shouldn’t be any blood in the stool. Sometimes this is accompanied by abnormalities in the blood screen – showing anaemia or a low iron (or its surrogate marker, ferritin) level.
A colonoscopy can detect a variety of abnormalities – including cancer, many of which are treatable, particularly if detected early.
As an investigation of the bowels it is very good and usually safe, but, we don’t send everyone for this test as not only are there not enough endoscopists – clinicians who wield the scope, it is likely that undertaking scopes in the population at large would yield many false positives – people being diagnosed with cancer when they don’t have anything wrong, as well as the risk of harm from the procedure – one in every three thousand people scoped can experience bowel perforation – a potentially serious complication.
To be honest, I don’t want to go into too many details about endoscopy as I am not an expert – you can find lots of information at this website.
What I am more of an expert at is working-out the rights and wrongs of tests.
And this is the point.
If a doctor proposes you have an investigation or not – invasive, painful, embarrassing or whatever, there should be a good reason for this.
As I have written before, the vast majority of clinicians – doctors, nurses, therapists and pharmacists care deeply about their patients and would never consider a treatment or test which could cause harm.
Different people have different interpretations of risk – others do not adequately perhaps consider a patient’s preferences.
What this comes-down to is the original questions.
‘Should I have a colonoscopy?’
My answer is truly, I don’t know, as I am not your doctor and I don’t have the whole picture.
What I can say with certainty is, if you are asking me the question, or you are not entirely sure whether a camera, CT, MRI or operation is right for you, you haven’t asked enough questions.
This leads to a mantra of patient safety.
Patients (and staff, and anyone for that matter), should be feel confident and adequately empowered to ask their doctor or nurse or therapist why.
Why do you think I need a CT?
Why don’t you think I need a CT?
You get the idea.
The days of the doctor sending an unquestioning patient for tests and treatments is over.
Empowered patients, who are informed, who share in their health care and treatment are those who are partnering in safe care and, if your doctor is unwilling to provide an adequate explanation, ‘I want you to have the test because I want you to have the test,’ then, my recommendation is to look beyond that individual who I am sure would not be satisfied with that approach were they the patient.
PS I am quite good at these non-answers; something they teach us in medical school!
The best part
where I live
are the Highland Cows
around the corner.
They have a big field
with a sign that says,
‘Mind the Bull’
although they look placid
I haven’t yet chanced
going into the field
& patting them.
A few years ago
a highland cow escaped from Pollock Park –
a dog had run into the field and threatened its calf.
It was found a mile away
Inside the loading-bay
of a garage
on the Battlefield Roundabout.
Always with smiling faces when turned into soft-toys
(sometimes with, mostly without, Tam o’ Shanters)
that my mum always called ‘coos’
which I believe
Is what they are called in the Highlands,
in the South-Side of Glasgow.
Funny isn’t it.
Here am I in South Yorkshire,
cows, in a field, neighbours/
I have no idea what they are thinking,
behind the wrought-iron railings of the Country Park
or behave in a different way,
perhaps with a Glaswegian
West of Scotland lilt
to their moos.
These creatures which seem so at odds with 21st Century existence
through my experience
And long may they continue!
27. CRP aka un-person-centred care
I won’t go into details, but here is the scenario – when the health service, and the divide between mental and physical health goes wrong.
An older man, say in his 80s has deteriorating memory, changes to his personality, perhaps his sleep-wake cycle is reversed.
His family have been helping him at home for the past six months, but, finding it more and more difficult they decide to transfer him to a care home for respite, at their own expense.
Four weeks after transfer to the care home his behaviour, let’s call him Nigel, to make this more personal, has deteriorated. He isn’t sleeping. He refuses to wash and on one occasion he punched another resident.
The GP is called who calls the psychiatrist.
GP: ‘We believe Nigel has Vascular Dementia, the care home staff are struggling to support him, despite all their best person-centred interventions – diversion, distraction, relaxation, he is becoming more anxious, more distressed. We can’t cope.’
Psychiatrist: ‘This man doesn’t have a diagnosis of dementia, he hasn’t been through the memory clinic, he has red legs, I don’t feel this is a psychiatric issue – it is medical; send him to A&E’
24 hours later, Nigel is admitted to a ward, let’s call it ‘Merlin Ward’ at the local acute hospital, he is seen by the physician who checks Nigel over and feels that there isn’t anything majorly wrong with him other than his 88 years and several long-term health conditions; perhaps, diabetes, heart disease and asthma.
‘We need to get Nigel home, although he can’t go back to the care home as they said they can’t cope and he can’t go home as his family can’t cope… What do we do? Let’s wait for the social workers to sort him.’
72 hours after admission Nigel has become distressed. Anxious and fearful, he wants to leave the hospital, he can’t understand why we won’t let him go, he feels we are trying to harm him, poison him, deprive him of his liberty.
The next day Nigel has smashed a computer, a window and punched a member of the nursing staff. Nigel is not a bad man, he isn’t violent, he is distressed, terrified.
The staff do their best to calm him. He throws a plate against the wall. It smashes.
We try to administer medicines, overt and covert, Nigel refuses.
Eventually, for his own safety, we sedate Nigel. He becomes tranquillised.
The hospital staff are distressed, his family are distraught.
‘We can’t look after Nigel, we feel he needs to be sectioned – for his own safety,’ Says the hospital doctor, sad, feeling defeated, inadequate.
Another twelve hours pass.
The psychiatrist arrives, mental health social worker in tow.
This man is not psychiatrically ill – he is medically ill, he should stay here. You are doing a great job. After all, his CRP – a test for infection, inflammation and innumerable other conditions is slightly high, his blood count low and kidneys sluggish.
‘We are not trained or equipped to support this man,’ says the matron.
‘I’m sorry – the law is the law, he is medically ill; it’s not his psyche.’
The psychiatrist departs, the social worker leaves the building.
The nurses are left with a ward full of older people, frail and vulnerable, they call security, guys in stab-jackets with thickset necks; they sit sweating in the corner.
Everyone feels disappointed, let-down, exasperated.
Nigel is still zonked from the sedation from earlier.
The computer monitor, still smashed, the broken crockery has been swept away.
This doesn’t seem right.
This doesn’t seem person-centred.
Not holistic, or collaborative.
What do we do? Where do we go?
This is a failure of the system, a failure of standards, inadequacy of care and lack of love – it is not considering what is best for the person, it is playing organisational games where the patient is piggy in the middle and no one goes home satisfied.
Nigel remains locked in the ward. Asleep.
This is a fictionalised account.
Nigel is not a real patient.
There is no Merlin Ward.
There are psychiatric teams who see the medical/psychiatric dualism of modern medicine as an impassable obstacle.
28. Dad, did you get the job?
It didn’t work-out again.
I only had to wait three days to learn that the appointment was not mine. I am sure I could have been made to hang-on longer. But no; Monday until, today (Weds).
The other guy got the job.
Did better in the interview;
Maintained his calm under fire.
And that is perhaps why three years ago, after a similar process – with different guy, same set of circumstances. That was an occasion for a Spring Cleaning.
On the afternoon of Rosh Hashanah, you head to a nearby stream or body of water (ideally mit fish) and cast away your sins, transfigured into crumbs of bread. Tashlich.
Organisational Tashlich. Throwing away?
I’m not feeling particularly paranoid.
I had worked-out the result by Tuesday.
In fact, you could have said I worked it out beforehand;
But, let’s not.
Trust me –
Experience does not count.
Neither does performance.
Nor your work
Or the output
Or the innovations
Or the awards
Or blogs (even this one).
Fixated on tugging, nagging, pulling; schleping in the opposite direction.
Listen to what the people have to say vs we know best.
Go to the Gemba; let them come to us.
Pressure, pressure, targets & count the numbers. The numbers count.
People are just
there are always more of.
Always more willing subjects ready
It’s not how you get there, it is the output.
Cast-aside the burned-out, drained, knackered ones, always more scallops in the sea.
We elevate the pressure;
Crank it up.
You are either not working hard enough
Or you need me to breathe down your neck
Without my oversight
You will slack.
No use, good for nothing, homeless folks, smoking their cigarettes and watching Sky TV.
My way or not even the highway.
My way or
Down on your knees.
Well, son. Again, it didn’t go my way.
It didn’t go the way of the people – and, what, with the world in such torment why should it?
When we have Putin and May and Trump.
The ideologies do not match what the people are saying and yet,
The Affordable Care Act can fall
we can cruise out of Europe
certain folk don’t like the aesthetic.
In the interview, I was asked – what about those who oppose you, who stand in your way, who reject your ideas.
My answer, twofold –
First, involve, explain the issues, acknowledge what you have in common and, collaboratively find solutions to the wicked.
Try, convince, use persistence, acknowledge that the laggards are sometimes more fearful of change than of being left behind;
But, what if, they are still standing in the way; blocking your path?
I think this was a metaphor for the interaction, for the exchange – correct answer I suspect, would have been, crush them, take no prisoners, grind them to dust.
My answer, well, perhaps not;
My answer, the soft martial arts.
Use the same acrobatic I employ with my patients – flow like water, bend, take the energy and go with it.
That, perhaps too hippy an analogy, didn’t work.
And, what I must now do, is find the way to use all this crap, all this antagonism, opposition, misdirection, to help me move forwards. To help me find some way to answer my son that doesn’t sound like defeat or failure.
No, son, I didn’t get the job, but this is an opportunity.
It may have taken me three years to wake-up and realise the water is boiling, but it is not too late for me to jump out the pan.
And all I am left with is sorrow.
I know it is Christmas Eve Day & all, but, I couldn’t help myself – you see, the way it is, when I get these thoughts in my head, the options are either to put them to paper or allow them to dissolve; a little like dreams. Some thoughts hang around longer than others, for most, it is just sparkle, fizz and gone.
Here I am.
I don’t know whether I have been fortunate or not to have lived through the past few weeks – well, fortunate to be alive, sure, but, to have experienced them at all, I don’t know.
It is a little like grief, only I am the person who has died.
You see, me, passing through my notice period, then on Friday, the end, has been strange, overwhelming, frightening, painful.
Not many of us get to witness our own passing-on.
For me this time is like Kubler-Ross’ stages of grief:
I know, yes, this is nothing at all similar, after all, here am I, seven am, sitting in boxers, typing at computer, and, yet.
I think of my friend’s uncle who after he died unexpectedly was showered with tributes from appreciative students – the quiet, sometimes taciturn guy who was not big on affection, was, it was discovered all too late, entirely the opposite.
I have been through this and, it feels a little like using your once-in a lifetime lucky charm; spent.
Grief is as much part of life as everything else; we say that one of the reasons we experience grief or, depression for that matter, is related to the way in which we connect with others, form close bonds and attach.
You can’t have one without the other – the cost of love, is its end one day.
& I know, I am still here, Mallard Ward remains open for business, the show goes on. Yet.
How often do people live through an unimagined success, the creation of something wonderful that is greater than you – perhaps the birth of your children?
When we opened Mallard Ward, we had one quite clear objective – to improve the experiences for older patients in the hospital who were confused; delirious or living through complications of dementia.
We knew we would be taking-on significant challenge, this was not going to be easy. The management objected, the leadership irate. For, the patients that were often seen as trouble, we were like me at football – the last person to be picked for the team. No quite untouchables, but certainly to many un-desirable. And we took these folk and made something beautiful.
And I have passed-on, in transition, a Yuletide limbo that I knew I’d never enjoy. Then, that wouldn’t have been difficult to anticipate, for he who is never satisfied, never happy, always seeking a little bit more.
So, no, I am not dead.
I am experiencing a keto-flu; a transition, my psyche adjusting, just, as the Ward will adjust, the cracks papered-over and new things found.
The end is not the end, it is just the next phase.
30. Decisive Moment
Yesterday I wrote a sombre blog about death and hospitalisation.
Please don’t misinterpret my message – admission to hospital, when necessary, is, in the UK, an almost universally positive experience; and, note, I choose my words carefully – necessary is perhaps key, as, not all admissions are necessary and once admitted the duration of the stay is frequently longer than necessary.
Moving a little away from admission to the event itself, the moment. The trigger that precipitates the pathway.
The best example I can provide in relation to this is an older person falling.
The split-second of distraction, over-balance or disorientation and then the trauma, the fall, collapse, drop.
This magical moment which, like a spell cast-over an individual’s existence can determine the trajectory for the rest of their life.
This is the Decisive Moment – a term popularised by my favourite 20th century photojournalist, Henri Cartier-Bresson, originally from the 17th French century writer Jean Francois Paul de Gondi.
The moment at which all that follows is secondary, determined by the evanescent split-second determinants of fate.
The fall, and all is changed.
The fall and fracture, cracked head, broken arm, confidence lost, and, the ebbing-away of autonomy, confidence and immortality – for, as described yesterday, don’t we all imagine we will live forever, that the moment will always be?
And that fall triggers a cascade of events that can lead to an irretrievable change. Suddenly from being Jo or George or Sadie, they become a patient X, in hospital gown, escorted to x-ray or theatre, their individuality hacked-away by the system that endeavours to allocate a place in the process.
There is little we can do about the decisive moment, and likely, there are just as many moments of positive happenstance in our lives – recall the 1990’s movie Sliding Doors. Look left and right, alpha and omega.
There is no knowing whether we will end-up happy or sad, wealthy or poor.
The decisive moment as described by Cartier-Bresson was the immediate, unrecoverable instant when elements coincide, when light, shadow, texture all combine to produce an image that conveys deep meaning, that describes something more than came before or after; a coming together of bits and pieces, which, like life spells wonder.
We cannot change these moments; we can open our eyes and perceive their passing, for, without the mindful moment, we are likely too busy, wrapped-up in the chaos of getting-on to appreciate the beauty.
And, to me this is the importance of the decisive moment – it is our obligation to slow-down and look around; appreciate the gift, the richness of our times.
Sometimes I want to cry at the almost sacred encounters to which I am privy – the last moments of life, the cup held in delicate hand, smile, laugh, look of suspicion.
Slow down, slow.
The race to the finish-line doesn’t get you anywhere in particular.
Moment by moment, let us distil to the best of our ability the richness around us.
31. Delirium and numbers
I have been meaning to write this for a couple of years; the relationship between numbers and delirium… I’ll explain.
You see, there is at times an incredible focus on the numbers associated with a person who find themselves in hospital; I’ll give you an example –
I could go-on. The bottom line, is, that these numbers are all within the normal range.
The normal range relates to something statisticians describe as being the numbers which are most common in a certain population. In other words, the normal might not be that normal if the population is odd.
If you take running speed.
For a class of 13 year olds, this might be a certain ‘x’ mph, whereas for 80 year olds the normal speed might be ‘y’ mph. The numbers don’t specifically matter.
Within this normal distribution, you will have someone like Flying Philip Rabinowitz who, before he died in 2008 held the 100m record for a 100-year-old (30.86 seconds).
You see, normal is as Hemingway says, a Moveable Feast.
Back to the numbers.
There is within certain branches of medicine a fixation with numbers – usually this is when people who do not have an adequately deep understanding of sickness and health, where too high or too low a number isn’t normal, therefore is not right.
Translating all of this to the world of delirium –
One of the challenges we sometimes encounter in hospital is determining whether an individual’s behaviour relates to delirium or dementia.
This is important to establish, as I have previously described – those experiencing delirium often, given great care and support, are able to fully recover, whereas, for those who have dementia, the prognosis is different.
In most situations, you can compare this with a standard reference chart found in text-books which differentiate delirium from dementia:
In a hospital setting, this is complicated, as the entire experience is delirioigenic – (a word I have just invented, meaning ‘inducing or leading to delirium’) – the changes of staff, the light, the bed-moves, medicines, doctors, therapists, nurses; cardiac arrests, or shift-changes; phlebotomists, radiographers, coordinators or social workers, all passing in and out of your experience, unpredictably, erratically, inconsistently.
Were you to seek a recipe for delirium – admission to hospital would be the primary ingredient.
Therefore, trying to determine whether an individual’s confusion is because of delirium or dementia can be difficult.
My most frequent management plan in these situations is to advise discharge – get the person home and allow normality to sort them out.
Sometimes, this is not straightforward.
A complication relates to the situations where the clinical team needs to decide… delirium or dementia…
This is when the numbers game is played.
Sodium or urea too high > dehydration > delirium > > >
For certain mental-health teams, this is a point of disconnection, where the psychiatrists say – physical and the physicians who asked for help from the psychiatrists are left floundering (I met someone like this today – hence the blog)
This goes to the core of the mental and physical health divide.
Most might not realise this exists; you see, some conditions are considered physical (at times called organic), others functional;
Here is a list of the medical and physical conditions:
Pneumonia, Diabetes, Epilepsy, Schizophrenia, Dementia, Bipolar Disorder; delirium
Depression, anxiety, Irritable Bowel Syndrome, Fibromyalgia, Chronic Fatigue.
I don’t know that much about the pathogenesis of either – physical or psychological; my understanding however is that in this modern age of genomics & men on the moon, everything is organic.
If I feel fed-up – this is organic; there are strands of DNA and RNA inside cells in my brain replicating and sub-dividing, secreting chemicals and hormones that make me feel or perceive a situation a certain way; if, I have septic-shock because my immune system is overwhelmed by the meningococcus, different cells will be replicating, dividing, responding.
It is all cells, DNA & chemicals.
Yet, when it comes to the way mental health is interpreted, dementia is considered a mental health condition (with various causes – Alzheimer’s, Vascular, Alcohol, etc) and delirium is a physical health condition (like, Pneumonia, Epilepsy, Stroke).
I appreciate this is confusing. I often find myself struggling.
I think what I am trying to express is my exasperation at the divide between physical and mental health, functional and organic disease.
You see, everyone who is in a state of dis-ease or ill-health needs the same things;
For those conditions which respond to treatments or remedies, we need tablets and love; for those without the tablets, whether in the form of placebo or not, we need at the very least, love.
Love – this is care, support, attention and a sensitive ear.
And back to the numbers – the numbers that are sometimes used to define a pathway or an individual;
You are my patient because your CRP (C-Reactive Protein – a marker of infection or inflammation which often increases in situations of physiological stress or distress) is elevated – this is something medical; I can’t help you because your CRP is normal – this must be within the sphere of the head-shrinker.
No, no, no.
Let us all come together an acknowledge what is self-evident; what is before our eyes.
People are more than their numbers.
Sure; you can tell a lot from the numbers:
T 39, P120, BP 80/50, Sat 88, BM 2, GCS 13… All say something to those doctors and nurses out there who can recognise critical illness, yet when the numbers are normal, this does not necessarily mean all is well. Numbers are just statistical aberrations.
I began writing about numbers and here I will end.
Let us not make enemies of the numbers.
Let us remember that they have brought us wonderful things;
At the same time, let’s not be limited by them, let us not obsess or forget where the numbers have come-from.
Numbers are relative, people are absolute.
32. Dementia #
How hard it is to see the person you love
progressing through moments
shape-shifting into someone different,
adrift in place.
An echo of their self
As they pass,
a flaking headland,
Pain that sends an echo,
through Monday to Sunday
Godel, Escher and Bach
linked by the eventuality of time
the march of moment,
You imagine it is a dream;
a ghost image;
Passing before you,
bouncing off your retina.
no longer ashamed,
Just carry-on as normal
as if this new You was something we had planned
way back when,
when we were coordinating the future.
Nice retirement plan;
slow down, feet up and restless,
and getting up
Winnowing of the self until all that is left is
And what goes forwards,
What makes the difference from now into the future
The footprints we leave.
With a final last, lost
in the eye;
the curtain comes-down.
Your terminal act,
Shake of the fist
Your husband and sister and friends
for their defiance of the disease
their resistance to the disintegration
When you would sooner…
And we do our best,
We offer love,
even if the only nutrition you permit
Is sweetened tea,
we look away,
just as your plans are in tatters,
so are ours,
and our lives
and your life
be the same,
A Rorschach on you, on me, on us.
Until one day
The sun will shine
33. Disaster avoided (2)
‘I want to go home. When can I go home? I have been here long enough, I am well, ready to go, I want to leave.’
‘Doctor, I want to go. It is time.’
‘I’ll see what I can do.’
‘That’s what you keep saying… Two weeks now. If I go home and fall, if I go home and die, all I want is to go home. To my wife. Home.’
‘Let me go and look in the records, I’ll check what is happening.’
‘No. you have said that before. I want to go.’
And so, the conversation twists and turns in a closed loop. Patient wants home – not unreasonable, doctor, trapped inside a system of health and social care, knowing the inefficiencies, understanding the risks, thinking of something to say.
‘I am going.’
‘We are sorting things for tomorrow.’
‘Come and have a seat, I’ll get you a drink.’ (Nurse contributes)
‘No! I want to go! Stop! Shut up!’
Doctor, sotto voce, calls for Lorazepam, an anti-anxiety drug to supress the tension. Patient is becoming more fixed in their determination to leave, resisting all conversation, all distraction or diversion.
Suddenly he is back in the pit. Can’t see why he can’t leave. There is no coal left here. I will miss the lift. My shift is finished. My wife is waiting.
Frustration blurs with delirium. Mixes into a confused soup.
‘He is not taking the Lorazepam, says it will knock him out.’
‘Maybe administer covertly, in his best interests.’
‘We’ve tried, he is refusing that too; I think we need to give him an injection.’
The moment passes, I withdraw for I feel my presence, my lanyard, shirt and stethoscope are interpreted as authority as power, determination.
I explain to the students the theory:
‘When energy is building – anxiety, anger or frustration, the worst you can do is object, argue or force it down, for that merely aggravates the situation, amplifies the energy and contributes to an escalation of passion.
‘Diverting the energy, allowing it to dissipate is the way.
‘If there is no one to argue, there is no argument.
‘Allow the energy to flow, allow entropy to do its job.’
We return 20 minutes later.
He is now hugging the nurse. He is crying. She is crying. We are filled with emotion.
His justified anger (at being deprived of his liberty), has gone, we have managed to pull some strings, to allow him home today.
All the anger, irrationality fades.
He is smiling, joking, laughing.
He gives me a hug.
There was no injection.
His autonomy was not violated. We reached a conclusion that avoided any crossing of boundaries between care and carer.
It could have been different…
… Snap the vial, draw the drug, distract, hold him; he is fighting, struggling. All he sees are strangers trying to cause him harm, keep him from home. Hold the arm! Watch his fists. He is biting. Head butting. Screaming. Stab. The medicine is in, he is still shouting, kicking; the look in his eye. Cheated. Emotional contract shattered.
The drug is not enough; his energy is flaring, growing, escalating, he tries to stand, falls, shouts, hits, more drug.
Eventually he is becalmed.
And when he wakes there will be no tears of love, no hugs, just a step towards fragmentation, disillusion.
The drug may swamp his memory, fog the events, but thereafter the world will be different, broken.
In my practice of medicine, I have seen both strategies employed at different times.
The former, where every effort is taken to connect with the person, where an analysis of intention, understanding and emotion happens, the results are often good. With the latter, no one leaves feeling satisfied.
How many times in our hospitals are patients, doctors and nurses drawn into these impossible situations? How much harm, emotional and psychological does this cause to the staff who are trying to help, to heal, support?
Lessons in person-centred, humanistic practice can allow for better, less coercive interventions. Understanding the patient, seeing the energy, the angst, skilfully navigating the argument (i.e. not arguing) can result in an outcome that is beneficial to all.
Rod Kersh, October 2017.
Scottish summer holiday
excavating the dried-out cement.
Deeper and deeper
Stranglers & Golden-brown
And safe in the knowledge
that we are exploring,
small rocks and pebbles, undermining
the wall’s foundations
And the owner
as his wall
My friend’s parents paid.
35. Do NOT resuscitate
We used to call the forms DNR, that is, ‘do not resuscitate,’ this was changed approximately 10 years ago into DNAR, then DNACPR – do not attempt cardiopulmonary resuscitation; the reasons for the change of mnemonic related to confusion over what do to if someone say, chokes:
If one of my patients (who has such a form completed) is sitting enjoying their breakfast and a slice of toast goes down the wrong way, and, they turn blue, the right thing to do is Heimlich; not walk away or, if someone is in pain, injured or hurt – this doesn’t mean don’t help, treat or support;
It is far narrower than that initial definition.
The new term says, if my heart stops – it either fibrillates – that is the wavy lines you see on the monitor, it flat-lines or, there remains electrical activity but there is no blood flow, then, in these circumstances, let me be.
Don’t defibrillate, batter my chest or force oxygen into my lungs. By all means, stay by my side, hold my hand, make sure I am comfortable, and, that is enough. No more.
The numbers of people who have these forms today has increased significantly over recent years, and in nearly all instances, they are appropriate – they avoid people having ineffective, degrading treatment – they allow for a natural passing-away, they save nursing and medical teams the trauma of engaging in a practice they know is futile but lack direction or experience to stop.
I don’t know the situation outside of Yorkshire and Humber – here, we have the one form, that follows a person from hospital home and if required back again; for, you see, DNACPR doesn’t mean don’t treat – it is not an instruction to stop the antibiotics or remove the oxygen; it is not palliation. Indeed, in many instances, it is the very opposite, it is the taking time to think and consider the reality of an individual’s existence and the likelihood of their death and frequent impossibility of recovery.
The form however is not enough;
I don’t intend to go into the details here as to how, when and who should complete the form – there are guidelines from the Resuscitation Council UK and other organisations.
What for me is the important association between the form and what happens to the person identified, is how we recognise that they are in the last year or months of life, that the added benefits of medical intervention – of which there are many, equal the costs of treatment, which are potentially, prolongation of death, extension of suffering, fear, hunger, pain.
If I had the option of 48 hours of pain and suffering beyond a potential passing-away, would I opt for this over leaving me be?
And, my point?
Well, it is, that DNACPR is not enough.
A form is not enough.
It is often perceived that so long as there is a form in the medical notes or resting on the mantelpiece, all will be well.
It is not so easy.
Over the past fifty years we have drifted far away from natural death into a realm of high-tech intervention, treatment and physiological support; for the most part this is incredible, often unbelievable in the wizardry of the technicians and scientists who have developed life enhancing and prolonging procedures and tools.
Yet, with this great gift, has been a departure from nature.
The medicalisation of death has become dominant.
In most places in the UK, the majority of people die in hospital beds. Away from home, from the familiar.
Many die in ambulances en route to A&E; the form is not adequately sophisticated to communicate the wishes of the individual in relation to the moments before the slipping-away; the system too complex to allow the obvious to take control.
Where am I going with this?
I am heading towards a recognition that the form is not enough; a piece of paper does not ensure a natural death; more is required. The conversation and explanation of process, a preparing for eventualities that are alien to the average person.
Yes, the form is the first-step, yet without complete consideration of all that might happen, go-on, the chances of failure are high and, with only one death allotted to each of us, we don’t want that to go wrong; like life, as Kundera says, there is no dress rehearsal.
For more see – advance care plan.
36. Do you, or don’t you? (for dog walkers)
It would have been yesterday were it not for the bank holiday.
Out with Maisie;
Black bins and green boxes lining the streets ready for collection.
My own black bag, morning gift from doggie; do I or don’t I?
fortnightly when the men come to take away our stuff – rubbish, detritus, waste, I encounter the same question.
Do I or don’t I pop Maisie’s bag in their bin or, should I wait for the municipal one?
Do I risk approaching the bin of a house where a person might walk out, or spy me from behind the Venetians – spot me messing with their mess; opening their bin and adding to their stuff?
Do I wait for an out of the way bin, one hidden at the end of a drive, behind a wall where I am unlikely to be seen?
And, who does this stuff belong to anyway? After all, residents are clearly showing that they no longer want it – does that mean that possession slips?
Rubbish can be strangely private and revealing.
What we throw out can tell much about us –
There is a family along the road that drinks one 2l carton of full-fat milk each day (and every week I worry about their lipids); another likes Chardonnay. Another is tidy; ordered.
Empty computer, hoover and play-thing boxes, folded flattened.
Nappies, pizza boxes and empty tomato tins.
I pass a man with a Labrador; our dogs attempt a mutual pounce;
He is in his early sixties, grey hair, slim, distinguished.
We each hold our dog on taught leads.
I hear him popping his poop in one of the bins.
At least I am not alone.
37. Doing to and with
I had a brief exchange with a colleague yesterday – it was really a clarification, yet it provided a significant insight into the way we both approach patients, treatment and care.
The discussion related to a patient who was struggling to swallow liquids and solids because of her underlying disease; this is not an uncommon phenomenon when treating patients with advanced physical, and, particularly, neurological disease.
The usual sequence of events is a person who develops recurrent chest infections; the speech and language therapist (pathologist in America), then examines the patient and determines that the cause of the infections is likely ‘aspiration’ – that is, food entering the lungs because of a failure in the mechanics or coordination of swallowing.
The next stage is a decision as to how best to support the person. Sometimes acute illness or drugs can cause aspiration and time, or stopping a culprit medicine can improve the situation. At other times, it is the progression of the disease. We need however to work-out what to do to ensure the patient is receiving adequate nutrition in the meantime – particularly, as, when a patient is ill, this is usually a time to increase their nutrition to help them fight an infection or disease.
There are various options – adding thickener to food, pureeing, mashing, ensuring a person is sitting upright. For those who have severe aspiration, when all alternatives have been considered, we sometimes use a nasogastric (NG) feed – this is a tube inserted through the nose, down the throat into the stomach, to provide food and fluid directly into the body.
I have never had an NG tube myself, although I have spoken to many patients and the process of insertion is often quite unpleasant, they are also easy to dislodge (pull-out) and there sometimes is a risk the tube is misplaced resulting in food entering the lungs directly causing severe pneumonia.
(Some clinical areas utilise nasal bridles – this is a way of tying the tube into place – see here.)
NG tubes are therefore a lifesaving treatment in some instances, for example, following a stroke or surgery. For people with more progressive conditions, particularly in the case of someone who has dementia, where aspiration tends to be associated with late-stage disease, patients are unlikely to understand the purpose of the intervention. (At times, perceiving the tube as an assault or attack.)
Other forms of feeding – using per-cutaneous gastrostomy (PEG)– a tube directly into the stomach is also usually inappropriate for people who have advanced dementia for similar reasons (for an insight into PEGs, I suggest you read John Diamond’s book ‘C’).
The final most sophisticated form of nutritional support is total parenteral nutrition (TPN), where nutrients are provided directly into the bloodstream. This is usually only appropriate in certain situations, for example, after gastrointestinal surgery.
What to do when there is no option for an NG, a PEG or TPN?
One aspect of this is starvation.
Not allowing the patient any food or drink at all. (Long-term treatment with intravenous fluids is also unsustainable as a means of hydration for other technical reasons).
We don’t do this.
We need to decide how we can support – as often people are still hungry or thirsty, assuming they are conscious.
It is this decision that started me off today – how we talk about it.
The consensus with my colleague was that there were no alternatives other than allowing the person to eat and drink at risk. This is the phrase we use on my ward, which implies that we support a person to eat and drink as they are able, providing as much support as possible to reduce the risk of aspiration – ensuring they are fully awake, alert, sitting upright, out of bed, small sips, and so on.
When asked for his opinion, my colleagues suggestion was ‘ethical feeding’ – it transpired he meant the same as me i.e. eating at risk, although I needed to clarify the situation, after all, what is ethical? One might interpret ‘ethical’ as restraining a patient and feeding them against their will to prevent starvation, as sometimes happens in relation to psychiatric conditions where a person is at risk of death because of misperceptions relating to food.
It transpired that ethical and at risk are the same.
The difference to me was however the feeding.
As an adult, we eat our food. When we are unable or incompetent, we are fed. I feed my cat or dog or a baby, I eat my McDonalds.
This subtle distinction has little to do with food or nutrition but, locus of control.
The essence of doing to a person and doing with. The latter assumes autonomy or capacity, empowers, looks to an independent future state, the former, to dependency.
This translates across many aspects of health and social care, indeed, it is one of the philosophical differences between the two, where health is more often a doing to, social care, a doing with, one dependence, the other independence. Paternalism and Autonomy.
There will always be times when a paternal approach is required, when we are so unwell, sick or poorly that we want to be looked-after, when we are happy to handover control; as a model for the future, we need to always consider first with before to.
There are few things worse than listening to someone talk about their dreams; unless you are a soothsayer, a Pharaoh, or, perhaps, chatting with your children as they relate their anxieties.
A few days ago, I had a strange dream – I wouldn’t go as far as saying it was ‘vivid’ – but suffice to say, the next day I couldn’t tell whether it was real or not.
Here’s what has been happening…
Over the holidays my family gathered in Doncaster. It has been an amazing week, with more Kershes in one household than at any time since the 1980’s.
Part of our gathering involved looking through old photos.
I have an album full of black and white photos; starting with my siblings when they were young, going-back in time to the 40’s and 50’s when my parents were children and further back to their parents’ childhoods.
Most of the pictures from yesteryear were of family in Glasgow. Some taken in the countryside – perhaps Troon or Ayr, others at celebrations – Passover or Chanukah.
It is funny how much of the past is crystallised in these images; moments. There is even one of my mum, with a man stepping-out in the background, a sort of homage to Henri Cartier Bresson.
What led to my dream however was the frustration at our inability to name, place or identify so many of the people. Most have now died; their children or grandchildren are likely in later life. The majority now lost to the past. Nameless. Voiceless.
And it is this link between the present and the past that captures my imagination. Specifically connecting with my job. Old people, still young.
I love it when patients come to my clinic with their sons and daughters, grandchildren and occasionally great-grandchildren.
For those of us whose families have been wrenched apart by geography, migration, education and profession, who live in communities that are made-up of friends and acquaintances rather than people who knew you when you were a tot, before you cut your first tooth, changed your name or learned to drive, it is not the same.
Without family around you, your connection to the past is different – less concrete.
And so, to the dream.
I dreamed that I had another photo album; only in this one, I had written-down the names of all my relations – with my mum and dad before they died; fitting each image into a yesteryear family tree; supporting who I am today – not a fish out of water.
There was no album.
This was perhaps one of those things I had wished I had done when I was younger but never got around to;
Some people think this is silly – looking back on the past; translating facial features, interests or behaviours to those who have gone before, preferring instead to remain in the present, or, prepare for the future.
For me, I can’t resist. One foot in the present, the other in yesterday.
Most readers of my blog will not have heard of this term. I suspect most of those working inside the NHS don’t know of its existence either… DToC – Delayed Transfer of Care.
This is how groups of mostly older people are categorised once they are deemed medically fit – (another NHS neologism which too readily induces objectification), before they go home.
I know the people who invented (discovered/created?) this term probably didn’t intend for it to be used in a negative way – a little like Alfred Nobel and TNT; you think-up something novel, a new way to consider the workings of a system – even a person-centred interpretation of what it is to be prevented from getting home from hospital and suddenly it becomes a weapon, where the person is forgotten and the process (usually called pathway) takes-over.
Delayed Transfers of Care (I really can’t cope with saying ‘DToCs’) happen, in hospital, when a doctor deems a person fit for discharge. That is, in the eyes of the hospital, or the clinical team, there is nothing more that can be done to improve an individual’s health or wellbeing – indeed, the longer they remain in hospital the greater the likelihood of harm from all the risks of being somewhere you shouldn’t – medicalization, over-diagnosis, over-investigation, falls, hospital acquired infection and so on.
From the point the doctor says ‘MFFD’ (Medically Fit for Discharge – another term I don’t really like), the clock starts, with discharge teams, collaborations of health and social care, management and pathway staff rushing around in flurries of waiting times, lists and numbers to ensure that the usually older person is moved out of their hospital bed as quickly as possible.
Sometimes the next step is a discharge lounge – a sort of transient Neverland between hospital and home, or rehabilitation, intermediate care or step-down bed – alternatives which are a little longer lasting but just as discombobulating to older people, particularly those who have delirium, dementia or cognitive impairment:
‘Can you tell me where you are?’
‘No, actually we are in an off-site Discharge to Assess (D2A!) care facility somewhere in the North of England.’
The reason some people have begun discussing Delayed Transfers of Care (which on reflection is a bit of a mouthful), is because of the Tory government’s crippling squeeze on social care – councils across the country having millions of pounds taken from their budgets which is an indirect cutback on healthcare; I know this sounds cynical – it is hard not to be a cynic when people are dying in hospital instead of living at home.
Because of this financial emasculation (too extreme a word?) of health and social care, older people are stuck in a limbo between hospital and home, with the delays becoming DToCs.
‘You are experiencing a DToC because there is no room in the intermediate/ rehab/ interim care/ step-down facility.’
You see the problem?
The person slips from experiencing a DToC to being a DToC.
You can spend lots of time and effort re-educating staff on the meaning of a word – for example, DNACPR – Do Not Attempt Cardio-Pulmonary Resuscitation, which does notmean ‘don’t treat/care’ – just don’t defibrillate or chest compress, or you can change the word and then work on the grammar, terminology and meaning later.
‘I’ve come to visit my dad, you know – bed six’
‘When is the next appendix?’
‘How many DToCs today?’
I don’t really have an answer to this, beyond a new government who doesn’t interpret balancing the books as screwing the sick, old and disadvantaged; in the meantime, perhaps, we can collaborate on finding a workaround to DToCs and a better way to keep the patients and staff people.
The eclipse is all over the news today. (yesterday);
Nuala McGovern living it up in Missouri; *
It doesn’t seem that long
The total eclipse
Down in Newquay.
(1999, the year we all thought the world would end).
I wasn’t there,
my folks were visiting.
It was a warm summer.
dad came back tanned
have a picture
In green welly boots
Mowing my brother’s lawn.
On today’s radio
I just listened to an astronomer
From South Western Australia
For her children when they couldn’t sleep at night;
When my kids couldn’t sleep
We watched Tigger.
Had that gentleness,
that you sometimes
Who have got it.
How great would it be if people were to just accept one another and not judge, not criticise, not evaluate and measure, just let be, let indulge in the connectedness that is part of what it is to be human.
Is the secret to being a good
& so on;
*And today she is sleeping with the enemy;
Nuala; now, now.
Enough with the Fox News!
41. End of Life
I was involved in an interesting conversation this afternoon, and, I was surprised to learn of the lack of understanding of dying – amongst colleagues who work in healthcare.
I thought, to this end, and, given the ruling published today relating to the cessation of feeding and artificial hydration of people in Persistent Vegetative States that I would write this blog.
And, also, because my friend and former colleague Mark asked for an opinion.
I am sitting in a darkened room in the soon to be demolished Victoria hospital in Glasgow.
Mum is dying.
I get it, as does my sister and those family members and friends who visit.
The situation however eludes the medical team. They don’t understand. They are trapped in what I usually call the ‘medical model’ – this is the doctor – patient relationship of always doing something, another test, another investigation or treatment;
And, my mum not conscious, holding my hand, laboured breathing but little more.
The doctor identified a heart irregularity, they wanted to treat. I had to interpose myself between mum and the consultant to stop their plans of inserting a cannula in her swollen arm.
I can also remember, quite clearly, sitting in the room, searching for palliative care guidelines on my iPad, for, although by then I was a consultant and a supposed expert in the care of older and vulnerable people, I didn’t know. I was in the dark.
I later came to champion the cause of a dignified death through my work in Doncaster.
At heart, I am still however that same uncertain figure wanting the best, sometimes, confused at the actions of others.
And in the meeting I mention at the start, the conversation touched on the complexity of death, the necessity for specialised treatment and care.
My explanation was that although Specialist Palliative Care services which began in the UK and where we continue to provide world leadership are necessary – essential, most of those who die in 21st Century Britain do not need the complexity of medicalisation or specialist drug regimens; they merely need people who understand the limitations of life, humanity and existence, who are sensitive to the needs of the person who is dying, their relatives, friends and family, when something more exquisite than professional qualifications are required – empathy.
And oftentimes, empathy is not taught. It can be explained, it can be unlocked in those who don’t quite get it, and, I believe it is somewhere in all of us, buried, but present.
As a modern society we have forgotten death; it has lost its familiarity, and, this I celebrate. Rather than an everyday part of life, it has now become an extremis, an exception.
With these changes however, we have diluted our understanding of the end – of grief, and celebration of life.
For all the landmark decisions, inherent in the ruling relating to M, we will continue to encounter one-offs, situations that no one has thought of or encountered. And for these, we will continue to learn and grow as a society.
Within this, we must not become deskilled in the elements of a ‘good death’ or high-quality palliative care, support, empathy, love or adoration; we must maintain these abilities.
There are estimated to be 100 people in the UK who exist in a Persistent Vegetative State – a condition of unrecoverable brain injury associated with loss of awareness of self, others and the environment.
Every day in the UK over 1000 people die, mostly of natural causes, that is, old age, long-term conditions often complicated by acute illness.
We need the legal framework to support those existing in the nether-land of PVS, equally, and in my experience, we must ensure that those people dying daily at home, in care homes and hospitals receive the most compassionate, person-centred experience possible.
No needless needles, tests or, examinations; no futile drips, tubes or catheters. No pointless trolley journeys to x-ray and CT. Stop the drugs that do not add quality to life; involve the person who is dying – they have a right to know what is happening and, the family.
Don’t call them at three in the morning before they have had an opportunity to say goodbye.
Put your ego aside, place the person who has honoured you with their care at the centre.
And, if you don’t know, if you aren’t sure, if you are asking yourself the question, ‘Why do the nurses, therapists, son or daughter look at me strangely,’ consider, that they are all trying to communicate something to you that they can’t articulate.
Doctors in our society have overwhelming power – they are able to determine life or death, freedom or institutionalisation – they can trample human rights and dignity.
Acknowledge this power – this supposed superiority, and use it wisely, use it sensitively, with care, for it is likely that you one day will find yourself in a similar situation, holding the hand of someone who needs release but remains trapped by systems and structures, organisations and hierarchies.
42. Evening river
Swallows over head
as children play,
On the bridge
The River Wye.
In the evening sun.
How I can capture this moment
keep it for the bad
When it is cold
In the mid-winter,
Not remembering the possibility
Wanting to slow-down time,
it to a trickle
I can modulate.
It would be – likely cheating;
manipulating the moment
When is good, when is bad,
When to revel,
When to indulge
43. Evidence-free zone
The big thing in modern medicine is evidence.
The story goes, so long as there is no evidence, what you are doing could be wrong.
This is philosophy based upon the null hypothesis – a scientific method where you start with a position that pepper, drug P, or whatever has no effect on lifespan, symptoms or length of stay and you either prove or disprove the theory.
The less likely an event is to happen by chance the more likely there is an effect. In science, we take less than one time in 20 as being ‘statistically significant’ – sometimes we refer to this as a p value of <0.05.
I won’t go into this in any more detail as it is likely some of what I have already said is wrong. If in doubt, perhaps check Google.
The thing with medicine is that despite our beliefs that so much of what we do is evidence-based, so much consistent with the rigours of the scientific method, it is only the very tip of the iceberg (or the tip of a Polar Bear standing on a very long ladder on an iceberg).
Most of what we do is based upon experience, best practice, feeling, hunch.
I have covered this before – the impression patients have that the word of a doctor is anything approaching absolute:
‘You have a nasty case of pneumonia.’
‘The other doctor told me it was a chest infection.’
‘No, definitely pneumonia.’
‘You have a urine infection.’
‘Doctor 2 told me pneumonia.’
‘No, your chest is clear, it is bugs in the urine.’
‘Why am I breathless?’
‘It is a blood clot’
‘Doctor 1 said chest infection, doc 2 pneumonia, doc 3 urine and you are telling me a clot?’
‘Yes, a clot.’
This is not a demonstration of incompetence, it is just the uncertainty, the greyness that is central to many aspects of clinical medicine.
And this is why I am always surprised when I hear colleagues in their certainty, quoting evidence – particularly when they don’t stop there, as in, ‘There is evidence that drug A is better than drug B,’ but, go into detail, ‘Drug A is 2.12 times better at treating your infection than drug B’ – the more you up the ante, the more confident folk become, ‘In a 2012 study published by O’Hare et al in the Lancet, drug A in a double-blind, placebo-controlled trial was shown to be 2.12 times better than drug B at treating pneumonia. Here, have drug A.’
That is OK so long as you have pneumonia and it isn’t a blood-clot that is causing your symptoms, then drugs A and B are equivalent and the researchers needn’t have bothered.
Again, I am not trying to diminish the importance of this work – it is how we learn and progress; what is key however is that we don’t lose sight of uncertainty, of what we don’t know.
Strip away law and order, the internet and microwave ovens and you will soon discover that essentially, we are still the same vulnerable humanoids that left East Africa two million years ago.
Sure, you want a degree of confidence from your doctor – you don’t want them expressing uncertainty when you are feeling vulnerable, but, and here are the two main points – don’t overly focus on the evidence, for this is just part of an unfolding story that one day we will look back upon and laugh, and, no matter the evidence, it is first the context, then far more important the preferences, the interpersonal that makes all the difference.
Why is my prescription for paracetamol so much more effective than a blister-pack from Tesco? It is the ceremony, the performance, the medicalised placebo.
So, yes, I’m a doctor, part scientist, part shaman, and a little bit trickster.
The closest thing I can compare this to is falling,
Perhaps more accurately,
Dropping from an unknown height
Or means of deceleration.
Like a stone.
Instead of air rushing past it is people
Moments, achievements, changes,
Like being in a real-life Truman Show version of
The trajectory is?
Time of arrival?
So many images that capture the experience –
Attenborough’s little submarine plunging into the deep,
Stock Market’s crashing.
Should be more up-beat.
I keep thinking of my legacy – tortoise stuck to top of monitor and
Miniature Hornby man, lost.
Need to shift the imagery.
There be Dragons
maps used to say.
What is odd.
What is absurd,
Is what this says about me as a human.
A leaf clinging to tribe,
For, we are one tribe –
Whether you call it South Yorkshire,
It is funny how we so often see the difference, the separation as what keeps us together.
Let’s work towards family.
Let’s focus on the commonality.
Let’s not allow love to tear us apart,
Allow it to bring us together.
45. Flooding, etc.
You, my son, will live to see great floods, a symptom of the warming planet caused by the disregard we hold for our Earth; you will carry a phone, at all times; sleep underneath a hypoallergenic duvet, manufactured by hand by people in another country who are experiencing a technological naissance that is an amplification of the Industrial Age and the food you eat which also will have shifted from country to country either in jets or aboard ships that are juggernauts painted in Maersk Blue, as you meet people who have been proportionately traumatised in battle so as to be dead but have been resurrected, rebuilt, reconstituted by modern medicine that has become so proficient at treatment and cure that society is starting to be overwhelmed by the aged and the drugs they take to keep them going become weights that if in pockets would drag them down in the sea;
And, you walk on synthetic materials also from the same Maersk Line, while consuming seafood that is impregnated with microscopic fragments of plastic washed into the sea, which in themselves have been created by chemical processes involving ancient protozoa buried beneath the earth in places like Texas, Saudi Arabia and Siberia, and, as a part-time occupation, you will be collecting the detritus, gathering it as you enjoy the sunshine that we have come to fear for its damaging UV/melanoma, while, overdosing on Vitamins D, E & C because the factory lifestyle and diet are inadequate; we throw the homeostasis of ourselves into a flux – too much, too little, too late; raise the sodium, drop the potassium, tweak the thyroid; if you manipulate enough elements, over time you have created a new model; as you drive to work in a car that has taken elements from every continent as it regurgitates fossil fuels that contribute to the floods; with crocodiles snapping at your heels as you run to the nearest super-sized shelter, built specifically for such purposes from the surplus your society has generated in a Robin-Hood manner, stealing from the poor and making sure they are kept in place; amidst the citizens of Bangladesh as they fight for dry land, not fearing crocs, rather, more concerned by cholera and infected wounds for which there is an inadequate supply of antibiotics as the imbalance that is 21st Century existence continues;
I saw dancing in the street today as hundreds threw over-ripe tomatoes at one another; red, mushy laughter and in Yemen they are starving and I have never known such a time, when the torrent of news is so overwhelmingly bad – I had not even heard of the Rohingas a fortnight ago, and, the green winged peacock god of the Yazidis is also new; Gurus sent to prison for crimes that are a decade old and the ever present terror threat amidst a young guy who was erroneously threatened with sanctions if he remained in the country of his birth; a cock-up that is merely a taste of the tatters of things to come inside the Brexit insanity; like a whirlpool, or a powerful current; seems OK from the surface, but once you are in… whoosh & you’re off, carried away & you will not likely return, despite the lies – that are called truths and the accurate representations that are diminished by name-calling of fake news; no one knows who or what to trust or believe any more – may as well lift a finger to the wind and hope for the best; we seem to have managed to mute the sense of smell of migrating birds in the same week as finding another potential cure for cancer, and next week it will be dementia, and tomorrow, perhaps a solution to the obesity epidemic; population growth, civil war, political tension, extremism and terrorism, hunger and greed, hate and violence, alcoholism and anger, stupidity and timidity, the loss of languages and the disappearance of the UK land mass as it flakes into the North Sea or is eaten away by the Atlantic, different bits of us falling off all the time, and without the least cynicism, wondering where we go to next. God bless this ship and all who sail in her; retirees and XXL-sized Americans disembarking on Caribbean beaches, swamping the souvenir shops and polluting the waterways, turbines whirring as the whales circle the planet lost in a sonic boom, and, children run for cover when the sirens sound over the rooftops of Hokkaido.
a forest of
It is the Kiddush.
The serving of ceremonial wine,
The Saturday service,
Up Church Road,
which is invariably
and roast chicken
Lokshen Kugel –
the sweet, cinnamony kind.
47. Forward and Back *two
Here is another interesting interpretation of social media, the past and depression; there is a theory, that social media – Facebook in particular acts like a massive memory and experiential sieve. It pulls-out predominantly good experiences and demotes the negatives.
This might sound like good and common sense; after all, is that not what we do with our memories naturally? The pain of my broken arm is lost somewhere in neurospace, the memory of flying over the handlebars, crashing and rough landing is ever present.
(As an aside, not being able to minimise the emotional, physical or spiritual pain of the past is likely caught-up with depression also.)
Facebook is predominantly filled with positive moments; it is a repository of happiness – mostly; yes, there are posts about disasters, tragedies and events, but these tend not to occupy the narrative for prolonged periods.
I post a picture of the sunrise; I don’t share my burned toast (unless it is spectacularly burned, or imprinted with the image of Jesus) – the party, happy day out, beach, success, and so on.
All of this is great, it is one of the modern wonders to be able to share these positive experiences (so long as the photo and the sharing don’t get between you and the experience) – in a time of community impoverishment, this coming together is at least a human attempt to connect.
But, when I click and click and scroll-down and see the lives of others – the foreign travel, new car, new baby, party happiness, it can result in an equilibration of my experience. ‘Everyone else is having a great time, what about me?’
Yet – we know this is not the case, we know that the moment was the moment and there is always more to a story than the photograph.
The concern relates to children and young people, particularly those who are socially isolated and heavily dependent on social media conceiving the world differently, seeing two worlds – theirs and the party everyone else is enjoying.
When I was 15, if I was alone, at home, reading a book and my friends were out partying, I may have known about the party, but the book could distract; bringing the pranks, antics and high-jinx into my handheld device surely would have magnified the isolation.
Do we follow our memories, or do they pursue us? Which generates the moment, who we are? What distortions in time and space create now?
Let’s perhaps not go there on this sunny Saturday –
Let us instead do some tree hugging, or mini-beast watching (I have my own ant colony, back for the second year running, underneath a disused kiddy slide – see pic), let us taste, touch, hear, see, let us perceive and contemplate, enjoy the sun or the rain or the clouds; moment by moment we see the passage of time –
Here is a quote I found this morning from Tim Ferris –
Whether the moment is good or bad, it is nothing but a moment.
48. FREEDLAND AND RULES
Thank you, Jonathan Freedland, in yesterday’s Guardian for both writing an upbeat article about the NHS (actually thanks for the upbeat article, and thanks for it being about the NHS), and, for your coverage of WhatsApp in healthcare.
You see, we have a problem – the NHS – behemoth, leviathan, whatever you call it, cumbersome and at times lacklustre, fuelled by the passion, energy and magic of a million staff is I agree the brightest aspect of the UK today. It is a light that shows us, no matter the crap, the self-interest, Global Warming, populism; when you come-down to the individual, one person connecting with another at their time of need is what it is to be human.
What Freedland highlights is the intersection between technology and person-centred care; remove the middle-man, the organisation – NHS Trust, Commissioners, NHS England, the Department of Health and, you are left with the human spirit that has enabled us to exist within societies for millennia.
The rules are the way in which society, organisations and people operate.
Look left then right, then left.
Brush your teeth.
Wash your hands.
Hold the pencil properly.
Our societies exist because of rules, regulations and oversight that is passed-down father to son, grannie to grandchild, through the generations, sure they help, they prevent cars knocking your down, caries, infections and scabby handwriting. Yet, we, that is people, are so very good at rule-keeping and so terrified of rule-breaking that we miss the opportunities hiding alongside.
We jump to conclusions. We assume.
The patient must have the medicine because it is prescribed.
I know this hurts, but I need to do the test.
Are you asleep?
Whatever the silliness, we are very good at following instructions.
This is loss aversion.
If I break the rules, allow the patient to sleep, I might…
Evolution is breaking the rules.
It is trying new ways of living, being. It is experiment. It is embracing failure, when the alternative is failing anyway.
And back to the rules and setting yourself free.
The internet is there.
It is a thing.
No one knows enough.
Collective intelligence is the next step in our evolution.
Imagine if Darwin, Einstein, Marx and Freud had the Web at their disposal; imagine if they could have FaceTimed; sure, there might have been more dispute as to who had the idea, but these guys, and guys who are interested in finding meaning tend to care less about their legacy than the act of discovery.
So, get out your phones, Webchat, blog, finagle your way into the tech, all in the cause of improving.
49. Funny… De-diagnosing
It’s funny – well, at least to me, in my world of not so funny things; I was going to start this with, ‘Most people will have heard of de-prescribing…’ Then, I realised I didn’t know what I was talking about.
This is groupthink & being a specialist all congealed into one.
I’ll start at the beginning.
And, in the beginning, there was de-prescribing.
This is the relatively new concept (outside of the world of Geriatricians) that says that it is often better to stop medicines than to start them; although there are many wonderful drugs out there, making pharmaceutical companies and stock-holders rich; there are also pills, potions and lotions which are not only ineffective, but harmful.
One of the joys of graduating from medical school relates to the pleasure of prescribing drugs – especially those which people can’t ordinarily access without a doctor’s say so. (or a non-medical prescriber, but, let’s not go there just now) (I think my first script was for Morphine)
And so, it goes – doctors are the folk you approach if you want medicine; antibiotics, pain-killers, antidepressants or antipsychotics. They are the gate-keepers. It you aren’t busy prescribing, as a doctor, what are you doing?
Anyone who has visited the installation in the British Museum which displays the pills/tablets/drugs/medicines tableau of what a person might take in a lifetime to ensure their wellbeing, will understand that we, that is, society, are drowning underneath a mountain of enteric-coated, water-soluble products.
And, to de-prescribing.
This is the art of stopping those medicines that are no longer necessary to maintain health – for example, the 96-year-old’s Simvastatin.
Yes, when I have my heart attack, load me with these agents – saturate my bloodstream with HMGCoA-reductase inhibitors; bombard my kidneys with agents to inhibit enzymatic and microcellular pathways, but, when I have reaped the benefit, let me move on. Grant me more than day-release from the prescriptions; set me free.
This is when I take my Bic and stop the statin, the ace-inhibitor, analgesic, anxiolytic, antihypertensive or sedative. When I set people free from the constraints of care.
On most occasions – that is, something like 99.9% of the time, patients are grateful. They appreciate that someone has stopped and considered their therapeutic burden, who has talked with them, involved them and their families in decision-making about the extent to which medicines control life.
And on to de-diagnosing.
I haven’t heard this term before – it came-out during a meeting this afternoon with colleagues who are looking with me at strategies to expand the knowledge and awareness of delirium within health and social care.
A funny thing; well, not necessarily funny if you are the patient, but funny in an ironic sort of way, is the eagerness of doctors to provide diagnoses.
I suspect patients are complicit in this.
No one likes to deal with uncertainty –
‘Can I have a bunch of those things?… What are they?’
‘Oh, I don’t really know, I am sure they taste good’
That sort of thing.
We seek assurance, orientation and guidance.
Doctor, what is causing my pain?
Oh, it must be your sciatica.
Ah… sciatica. I have sciatica.
This is different to –
Doctor, I am struggling to sleep
The onus often falls on the doctor to deliver. To perform.
De-diagnosing comes from this;
‘Doctor, why is my mother so very confused’
‘She has dementia’
‘Oh dear, I didn’t realise that.’
Three months later… Memory clinic at local mental health organisation –
- How can I help you?
- The doctor asked us to see you about mum’s dementia
- Your mum doesn’t have dementia. Mrs A, you don’t have dementia, I think you were delirious.
- Oh – so, no dementia?
This is de-diagnosis; when one doctor provides a watertight diagnosis that is adopted by patient, family and friends, which is then overturned because of the actions of time and, the thoroughness of the assessment conducted by someone who knows what they are doing.
How many of us could be de-diagnosed?
How many asthmatic, depressive, arthritics at some point in time had a wheeze followed by sadness and stiff joints.
A dance macabre.
There is so much urgency within our health service and our 24/7 society that the immediacy of results, diagnosis and prognosis is considered core business.
Time is a component of health and social care that people have tried to sweep under the carpet.
What we need is time and space to breathe, think and recover.
Last year, it was,
I drove past your flat.
I don’t know, you might not have been in.
My intention had been to visit,
To say hello,
See how you were doing,
try my best to hide my feelings,
reveal the inevitable changes;
thinning of skin and hair, duskiness of eye.
Loss of weight, fragility, frailty, fatigue – I can only imagine.
I had it all planned.
Head south, drive-up and surprise.
I stopped with the surprise visits a couple of decades ago.
Like the time I disappeared from Dundee,
riding along with
In his battered Fiesta which had no front window,
Just a flapping plastic sheet.
I disappeared with the intention of knocking on the door,
Here I am. (Appear, without fanfare, on the settee)
I later learned of the concern.
I don’t think a young person falling off the map then caused as much worry as now; for today we are all connected; instantaneously with whomever we wish. Unavailability is more often intentional.
And this reflects on me,
It says something about my,
sense of self,
and, position in the world.
I return to who I am,
Which is really a way of saying,
Every one of us counts,
But some more than others,
And when we are measured,
We are not all alike.
I have always struggled to say, ‘Here, look.’
‘Yes, me, now.’
Recently, I was reading the Gallic Wars,
Caesar, as third-person hero,
As a leader who led the fall of Gaul,
As he directed his minions,
Standing proud in red cloak.
This is one extreme.
We all must surely sit somewhere on a continuum of self-importance.
And how do I differ from Julius, beyond 2000 years?
Both guys, both, presumably enjoying time alone to think;
And, it is likely this latter
Where we differ –
(that and my dislike of violence, torture or cruelty).
I reckon that Julius
Would have stopped his car,
Rung the bell,
Not cared whether his position led to imposition
or his expressions
He’d have done what he had to do and moved on.
Yesterday, I attended a lecture in the hospital. The two speakers, one from Leeds the other from Sheffield discussed the 100,000 Genome project.
I’d heard about Genomics prior to that talk, but never really understood what it was about. I likely now still don’t understand; I will try to impart what I heard…
Most of us will have heard of DNA. This is Deoxyribonucleic acid – the structure of which was described by Crick and Watson in the 1950’s. DNA consists of chemicals – cytosine, guanine, adenine and thymine which in various combinations results in everything that is life on earth.
When the chemicals arrange in a certain way, they create a gene which then provides a template for the creation of proteins. And, most of us, or at least, the interesting parts are proteins.
I may be wrong with this explanation; if there is anyone reading this who has a better grasp, please let me know. I am a talker and sensitivist of old people, not a biochemist.
The idea behind the Genome project is to sequence (see below) all the genes we have in our cells – most cells have nuclei which contain DNA – and the genes; some don’t, but we will leave that aside (I am not even going to consider Mitochondrial DNA which is a whole other area I don’t understand);
Each person has one, or sometimes two – if they have cancer, Genomes. Today, as I sit here, to the best of my knowledge, I have just one. I hope that there aren’t any rogue cells inside my body in the process of mutation – time will tell. If you have cancer, because this is caused by a change to your DNA – certain rogue genes replicate erroneously, faster or slower than they should, you then have two Genomes – the one you we born with and the one your now cancerous body-part possesses.
Sequencing the Genome, as I understand, is to somehow put the whole Genome (from a cheek swab or biopsied section of cancer, or abnormal blood cell), through a special computer which processes the chemicals and translates them into code which can then be analysed and interpreted.
For example, if I have a specific variant of say, lung cancer, there are likely to be changes in my Genome that will be found in someone else who has the same type of cancer.
What all this is getting to, which I found most interesting was the aspect of the project relating to personalised medicine – you see, currently we have quite a crude approach to disease – we consider everyone is the same.
My high blood pressure is the same as yours, is the same as 100,000 other people, when, we know that every person is unique – this is a form of person-centredness at the level of genes; which is kind of cool – PCC isn’t just clinical hippies saying so; the lab folk can prove it.
My high blood pressure will be caused by a host of environmental and genetic factors – as will yours, as to whether the genetic factors are the same, or similar, currently, we have no idea.
Equally if I have high blood pressure, my doctor is likely to prescribe an Ace Inhibitor, which we know works very well to sort blood pressure; it doesn’t work for everyone. We even know that certain ethnic groups – African Americans, South Asians have a propensity for specific patterns of blood pressure and diabetes, yet everyone is treated the same – 10mg of Ramipril, or as close to that dose as you can get without falling-over or your kidneys packing-in.
The idea of the personalisation aspect is to work-out which drug will work best for you or me, acknowledging that although we are all the same (sans passport & the right to free speech), the differences in the genes that contribute to our diseases can result in different responses to medicines.
The project is starting with people who have cancer – one day, if we get there, you are likely to see the doctor who will first tell you you have diabetes, refer to your Genome, then determine which specific medicine you should take; for some, that might mean happily living without medicines – for others, you might have to take more, but all in all, it should prevent the strokes, heart attacks and dementia that are the blight of being an older 21st Century human.
The scientists are starting with cancer – finding-out which cancers are caused by which genes – they might even, in time, have gene therapy which can mean that people will receive treatment to prevent them acquiring the cancer, dementia or motor-neurone disease they have inherited from their parents. (Unfortunately (fortunately?), most forms of dementia and MND are not genetic – so these treatments will have to wait longer to be solved.)
I don’t know if this has made the subject of Genomics clear. This is very far from my usual subject area, although I can’t say I wasn’t psyched by the notion that science is demonstrating which we all know in our hearts to be true – we are all unique, we are all precious with individual stories laid-down in our life history as much as in our genes.
Listen, learn, care and be kind.
52. Geriatric fall
Yesterday, in the hospital we had a talk about clinical coding. This is the language used by hospitals, care systems, the government, national and international organisations to tally, calculate, cost and analyse what goes-on. That is, how many patients, operations, treatments an individual hospital is undertaking, this allows for individual ward or clinician level analysis – how many patients with pneumonia did Rod treat between May 2015 and 2016? How long did those patients remain in hospital? How many recovered, died?
It is unimaginably complicated and results in much feverish activity in the clinical coding department – this is a team of highly skilled analysers who plough through the medical records and assign codes which are then translated into numbers which are then collected by a cloud-like disease, morbidity and mortality tracker in the sky. From this you can work out the risk of you acquiring C. difficile from hospital A or B.
As with all unimaginably complex systems, it exists within a margin of error. Most people don’t know what that margin is, suffice it to say that it doesn’t matter, as when in doubt we endeavour to compare like with like instead.
‘They did 100 varicose vein operations in hospital A, but 150 in hospital B’ – is B better? Is A treating more complex veins? Do B work twice as fast yet have twice the number of complications – infection, pain, dissatisfied patients.
Tabloids love these figures as it allows them to get away with saying… ‘Hospital H – death rate is twice the national average!’ Subtlety is usually lost in these situations.
And from here I go to the title of this blog… Geriatric fall.
I was discussing this diagnosis with my team on Wednesday.
An older woman fell at home and was admitted to hospital; the initial diagnosis was ‘Geriatric fall’ – I guess to those of us who are less uptight than me, this might be OK – something to acknowledge and move-on; for me however, it stuck, like a rusty spoon.
‘Geriatric fall, what is a geriatric fall? How does it differ from a non-geriatric fall? Do ‘geriatrics’ have a special way of falling (aside here – when I was young, in the 70’s I remember my dad talking about the falls my grandma experienced in her Southside tenement – somehow, despite her falls she never managed to harm herself; she had a special way of falling; ‘She would crumple,’ I think was the description.)
Anyway, here is my point –
I, an experienced doctor who has spent many years caring for older people doesn’t know what a geriatric fall is; specifically, how it differs from all the other falls – perhaps, someone reading this can help.
Does it matter?
*I don’t even know whether I should be saying, ‘Geriatric Fall,’ or ‘geriatric fall,’ which is more correct or appropriate?
Will the system see Geriatric Fall and align this with better statistics? Will it allow those looking-on to understand the true complexity and challenge inherent in supporting a geriatric who has fallen, compared to someone else who is just old and has fallen.
My preference is usually to say, ‘93-year-old man admitted with a fall,’ I might then explain why I think they have fallen – arthritis, dizziness, too many sedatives, and so on;
(I have just read the British Geriatrics Guide to falls written by Finbarr Martin in 2007 and revised in 2010 – he doesn’t mention ‘geriatric fall’ in that document, so, at least I am amongst good company)
Over and above this is my problem with geriatrics in general; the word translates from the Greek – Geri – old age and Iatros – doctor; Not too far away from ‘Paediatrics’, but that is another matter.
You see, in recent years the age thing has become less relevant to my work – age, in the chronological sense. Physical, physiological and psychological age yes, these are more dependent of Anno Domini.
We are moving toward Medicine for Older People – Older being a relative term specific to each person; examining and addressing complexity, co-morbidity (what else you have wrong with you), frailty and fragility are all areas in which I have a level of skill.
Geriatric. I don’t know where that fits-in.
In my experience, most older people – and that is whether you are 40, 80 or 100, see the world through a set of ageing eyes. They don’t necessarily see themselves from outside – the wrinkles, liver-spots and greying hair; more often people see themselves no different to the individual who was 18 setting-out on life. Adulthood. Away from the seven ages of man. There is just one age… Now.
And back to geriatric falls.
I am going to stick with the basic ‘fall’ – I may be doing myself a disservice; I might be losing my organisation millions and sullying its reputation for the quality of care we provide geriatrics.
I, however have my reasons.
In the end, although names are important, it is what you do with them that counts.
53. Grass cutting
I had a brief chat with one of my patients –
I had called him back to the clinic as his heart had been going
on the recorder.
He had given-up driving;
His eyes not so good any more.
An aluminium walking stick keeps him steady.
he was interested in the recorder –
thought he would give it a test
thought he would investigate
the too long grass in his garden.
(at his age… honestly papa!)
He had already worked-out the abnormality
by the time he came to see me.
People keen amazing me.
I love people.
We spend the night out in Glasgow.
I’m sure that’s who it was.
Heather got the tickets from her brother
was a tabloid journalist
at the time.
At the end of the 80’s.
for whatever reason,
Heather came home with me afterwards.
To our sandstone tenement.
and I can remember the full-length mirror in the hall
that had no light.
and stayed the night.
And my mum
was not impressed.
55. Here is the place
Here is the place we set-off.
along the dirt track
which in rain
would become red mud;
Past the orchards
and strawberry fields
That are a story
past the thistles
and rusting fence,
along the path.
We find a house;
a leftover from 1940s.
not noticed by anyone,
there is no one around, to see.
Magdiel* at mid-day.
We ease-open the front-porch window
roll back the blind,
and squeeze through the opening.
Around us is dust
and cool tiles;
Certain maps of strategic location that were,
perhaps once, military.
And this was a long, long time ago, you realise.
And although we did know right from wrong from breaking the law,
we took some of the maps
for whatever reason
a Chinese cookbook.
I no longer have it (the book, that is),
although I know where it is
likely not known to its current owner.
Sort of a cosmic
all’s fair in love and war,
Thieve A, from owner B, and, owner C has it now.
we are quits
I don’t know what became of the maps.
I am sure the house is still there;
We didn’t do any damage;
Bad-eggs, as my papa would say.
We otherwise left the place as it was
To lessons on language
*Thank you Dorit Rabinyan for sparking this memory.
But, why can’t I go home?
I am 83 and not stupid and I want to go home and you
are stopping me
What is wrong with me?
I want to go.
Nothing fancy like deprivation of liberties, capacity or best-interests
Just, stuck inside a hot building in June
sunshine through the window
Good, old-fashioned pathway failure, waiting, wasted times
and lots of people
other patients & relatives & staff
Listening to the conversation;
Empathising with me for the tight spot I am in;
An old woman challenging her liberty
a pathetic system slave
I can organise a scan of your brain or bladder or bowel,
Prescribe specialised medicines
get-out the needle and thread to repair your damaged scalp.
Our bad – you fell while waiting, stuck
But, the simple things
Letting an old woman home.
are beyond my ability.
And, you know what…
This is a growth industry.
Her attention distracted
for a moment
or something else
down the corridor;
A stutter in the monotony of her clinical captivity.
57. I am Trusted by 86%
I made-up this number.
I have no idea how many people or what per cent trust me – I don’t even know what ‘trusted’ means.
These are some of the hazards inherent in data and statistics.
Please do not take this the wrong way. I love numbers as much as anyone. They are a handy way to simplify the world. If nine out of ten dogs prefer Pedigree Chum, then, who am I to argue.
Brexit was the most recent at-scale demonstration of the failure of a population to interpret numbers and data. Fake information in the hands of bad people, particularly when they are on TV, the newspapers or radio is incredibly powerful. We, that is, the people, seem powerless to resist.
I always prefer a good story. I don’t know when our powerlessness to numbers began. In our evolution, we have been using systems to count-out bones and cowry shells for millennia, but against the timeline of storytelling, this is nothing. Perhaps it is the relative newness that explains our doe-like paralysis at the hands of a man with numbers.
Stories combined with numbers are like Kryptonite.
I attended a conference this week in Doncaster – it was the annual UK Dementia Congress (the same one that awarded my team Dementia Friendly Hospital of the Year back in 2013).
There were lots of numbers.
‘Look, see here, I did this and things improved by 36.4%’
‘98.4% of patients were happy with their care’
‘the p value is <0.0001’
‘Agent X reduced the amount of brain amyloid by 54%’
‘the Neuropsychological Inventory improved from 40 to 120 – that is great!’
All numbers, and all made-up by me just now.
I know that people don’t consciously invent numbers, that doing so is in breach of nursing, therapy, medical codes of conduct – if the GMC discover your shenanigans, you’ll be in trouble!
Academics spend hours examining numbers and data, indeed, this is one of their most important roles – to read between the lines and determine whether the numbers someone is proposing are real of fantasy.
Most data is not subject to such rigorous analysis. Most just pops out of peoples’ mouths and falls on eager to adopt ears.
Where do we go from here?
Well, the following are some principles that I recommend:
If anything is 99.9% effective, you have to ask, effective against what, how, when, where? Sure, Domestos, like Pedigree seems to have some fairly significant numbers attached to it, yet, life is not so black and white. After all, how many of us would (like my dog Maisie, when she’s very thirsty), drink out of the toilet bowl, safe in the knowledge that the .1% of remaining bugs won’t do you any harm?
Votes, where 99% of people support one candidate or another are alwaysrigged. Humans are not like this – our genetic, gender, cultural and historical variation means that no matter the situation, there are always people with different opinions – so long as they are able to express them; if you risk getting murdered if you don’t vote for Comrade X, you will likely vote for Comrade X, or in a less sinister vein, if you don’t vote for Comrade X, we won’t necessarily kill you, but you’ll lose your job, or your family will suffer, and so on.
Numbers without narrative are also meaningless.
We used our Purple bag scheme and there was a 33 per cent drop in the numbers of patients experiencing pneumonia. Whatever. Without understanding the context, the inclusion and exclusion criteria, the numerators and denominators, this number doesn’t tell you anything.
It is not that people are intentionally trying to mislead (although that was the case with Johnson, Farage and co) – it is more that the levels of pressure and competition out there are so great that folk are rushed into producing results that they can’t necessarily assure.
The financial constraints in the NHS which are impossible, force people to behave in ways that they would not normally.
This takes us to a place of fear and coercion.
Two enemies of safety and harmony.
If I am too afraid to tell you that your system is a joke and is not working, you will believe your system is working and others will start to adopt the same mantra – use Rod’s system – it is incredibly effective at reducing pressure ulcers, complaints or, whatever.
This takes me to the origins of this blog – almondemotion – the amygdala as seat of fear and primitive responses to threat, when our logical, empathic mind is displaced by fight or flight.
I know that people reading this, particularly those who know me will think it strange that I am advocating for more rigorous measurement and use of statistical methodology – after all, I tend to be the intuitive, gut-feeling guy.
We need to wed our intuitions to rigour.
Don’t let one oppress the other. There is a time and a place for each.
Let your mind and imagination spiral into places not considered – propose and test new ideas, processes and procedures, go where no person has gone before! Then, check the numbers.
Alternatively, you can start with the numbers but, do not end there, see there is necessarily more. See that only by feeling safe in the knowledge that data and numbers can be questioned or challenged, examined, held-up to the light and tested for rigour can we gain confidence.
Check the checkers, have a laugh with the innovators.
58. I, Daniel Blake
I watched Ken Loach’s film, I, Daniel Blake last night with Rami.
It was a difficult movie – it exists in a hinterland between entertainment, documentary and eye-opener.
I was probably won-over from the start given the film’s Newcastle location; I have a special soft spot for Geordies, possibly because I see them as token Scots, and, likely, because my grandfather, Ben, came from Byker.
Mellifluous – that is, from the Greek, flowing with honey, is the word I most associate with the Newcastle accent; so, yes, I am biased. Yet, that aside, the story of Daniel Blake’s battle with bureaucracy is also close to my heart. In the NHS, we call that ‘medicalisation’ – when the person ceases to exist and they are replaced by a number, a disease or a symptom.
It feels like my life’s mission – unravelling medical objectivism from the people our patients are;
I don’t intend to return to person-centred care, today, at least; instead, for me, the focus of the film, was the reality that we are all equally vulnerable and, the change from person to object, is not something any of us ever expect or anticipate.
As I described recently, we mostly, tend to exist in a state of denial in relation to our own mortality, yet, the slip, from useful member of society, to hanger-on, can occur rapidly, particularly when this is a central tenet of the presiding government’s philosophy of, ‘we help those who help themselves’
Like sheep, most of us readily fall into line, when the system expects us to behave in a certain way.
Take the ticket and wait, tick the box, complete the assessment, the parking charge, stipend, go-around; we follow, we assume that the system has considered our needs, which in its wisdom always knows better. The system knows. The planners, machinators, organisers and coordinators have the power. When the traffic light is red we stop, green, we go. Society works well when we all keep to the path.
And does healthcare. Follow the instructions, take the medicines when prescribed, arrive for your appointment, scan or treatment and you’ll be ok.
‘As you failed to attend the clinic today, and, in line with hospital policy we have not arranged another appointment.’
This is something I see written in the medical notes all the time.
Sure, some people never wanted to see a doctor or visit the clinic in the first place; others are too afraid to attend – perhaps, their waiting-room anxiety, is too great, others are lost somewhere in the health and social care system and not at home when their appointment card arrives; they are sent back to the beginning, returned to GO without necessarily picking-up any cash-prizes.
Others, the depressed, the forgetful, the overly busy, plan to attend the appointment, but within the chaos of their disordered lives mis-schedule.
The system sometimes doesn’t have time for people; people behave in unexpected, unpredictable ways, are slower than numbers; hurry along, don’t admire the scenery, there is too much to do for us to engage with your preferences, just take the medicine and shut up and I can move-on to treating someone else. And on, and on.
I remember Esther Rantzen in the 80’s awarding Job’s Worth prizes to people who held the belief that is was more than their jobs were worth to allow humanity to enter into the equation, into the transaction; for some reason this has stuck with me.
In the movie, we see the security guard stopping Katie, and his boss, sympathetic, letting her leave; this made the guard’s manipulation of her vulnerability even more powerful.
Society is made-up of the good and bad, those with self-interest at the core, others, who see the bigger picture, whose lives are likely filled proportionately more with love & happiness.
Going out of your way to prevent someone else from having to go out of theirs.
Selflessness. Empathy, compassion – experiencing the suffering of others. This was the message that resonated throughout the film. Whether the scene at the foodbank or during the final monologue.
There are always more of us than there will ever be of them.
For, this is what it is to be human.
This is what it is to be frail and vulnerable; mortal.
None of us are immune, none of us live lives beyond the grasp of disease or homelessness, loneliness, pain or grief.
I understand the film was rejected by the Tories, lauded by Jeremy.
The times we are living-in say much about who we are. We will be judged by our compassion, by the extent to which we see people as more than numbers.
I can’t see it.
I just don’t get it or understand how it can be any different.
To me, and those I love, it just is, it is a given.
We are all equal, all part of the complex system of life on earth, the ecosystem, habitat.
Everything under the sun exists within a cycle of homeostasis, give and take, talk and listen.
Nothing else is feasible.
59. I love you, I hate you
Spit in your eye.
Tear you apart.
of falling to bits.
Words to the wise.
Swede, Dutch, Fin?
Yid? Vos mach du?
Ratchet the observations,
Up the ante
Moment by moment, monitor my every move.
I dance on occasion.
I am the Dervish.
A wall of sound, of movement, or disorganisation.
Clichés, one after the other,
I can’t think what to do or how to do it, you surely know better,
You are the one with the ID badge.
I am the one
wrinkled and grey, singing old-time songs,
Confident from my time spent on the line.
60. I may be right.
I think, probably, that I know what I am doing.
I agree with what you have said. Move in direction A, indicate, prognosticate, plan or decide; determine, direct, suggest or propose.
This is how it should be; this is the solution.
Yet, there is something inside, gnawing away.
Making me question.
Yes. Question whether the certitude I possess is appropriate, feasible or reasonable.
Surely, most of us have a certainty quotient.
The Earth is flat. It will take a certain amount of evidence to convince me otherwise.
It is raining, cloudy or cold. All of this, determined by my sensations. We exist in a world controlled by our perceptions.
Yet, some people will walk around (in the cold) and feel warm. Their perception of the temperature differs to mine. (Usually, generally, cold, so long as it isn’t July)
And, left or right; my political affiliations. Benefit of the doubt or shoot first and ask questions later, corporal or capital punishment or establishing the causes of crime and remediating. (aka a social disease)
Equality or competition. Standing on the shoulders of giants or the faces of peers.
Elbowing the competition or considering the needs of others.
There is me and you; Chaos or Community.
How can I be confident that my solution is true? What directs my compass towards the North, when you, you feel the enemy is to the South?
There is the objective. Objectivity is however relative. If ten people think you are crazy, are you mad? If a thousand? A million?
At a point, you must cast-off and accept it doesn’t matter what anyone else thinks, it is what you determine; taking fate in your hands and stepping-out. Risk.
Either flattened by the reality juggernaut or crossed to the other side.
Some of us must do something.
Sitting around, is certainly worse.
Do, do, do.
61. I remember
I remember sunrise over The Tay, walking home.
I remember the woods where I hid
The railway bridge
The night asleep on cardboard
Attack on a fun night-out
Under the dining-room table
Thickening ice inside the bedroom window
And still looking, still looking.
62. I step out and fall back in time
Dozing on speckled carpet.
Icey windscreen of rusting Mini.
Cocoon of Friday afternoon in front of the telly,
under the stairs
mysterious books lining the walls;
hiding the entrance;
old-fashioned Singer sewing machine;
concealed drawers with
mustiness of coats and blankets & lambs-wool.
Ice on the inside
of the sky-light
a futile homeostasis.
63. I was listening
I was listening to a nurse shouting at one of the patients.
She wasn’t shouting in anger,
more, because she felt that he couldn’t hear.
He could not hear.
His hearing aids were missing.
It was however odd,
that when, I spoke with him,
He could hear what I said.
I didn’t shout,
I didn’t resort to pen and paper.
He could somehow hear.
He was most upset about the loss of his hearing aids.
He was equally
at his nurse-call being tidily
out of the way
and out of reach,
on the wall.
For a moment,
myself in his place,
and was frightened.
I doubted that I would endure with equal stoicism
64. I wish you long life
This is what you say to a Jewish person who is recently bereaved – either in the days following a death or on the anniversary of the death of their mother, father, brother, sister, son or daughter. I don’t think close friends, cousins, aunts or uncles apply, no matter the sense of loss.
The reason I say this is because I have never felt comfortable with the phrase. When my parents died, people expressed these words to me – I guess, it is a useful filler when you don’t know what else to say… potentially more meaningful than, ‘I’m so sorry,’ or, ‘he was too young,’ or other such platitudes.
Interestingly, it is what the very words mean that causes me the greatest challenge – ‘I wish you long life,’ does this suggest, when your relative has died, the other person is wishing that you live a long time, now that the other is gone? No matter the quality of that remaining life, whether filled with sorrow or grief? And, what about the person that died; whether they had a long life or not, where does that enter the equation?
I can remember when I was 14 at school in Israel going with my headmaster Moshe and other classmates to visit the family of a soldier who had been killed in action – I don’t remember the circumstances. The family, in the, predominantly Yemenite village of Magdiel were in grief; I remember the men, sitting cross-legged on the floor, the father in tears – us uncomfortable, awkward; it is likely that something similar to ‘I wish you long life,’ was said in Hebrew, amidst the ululating and torn clothes, the covered mirrors and unshaven faces.
As society moves-on, death becomes more distant – we live longer, fewer of us, in the West, at least, experience death; most adults have never seen a dead body, most into middle-age, have both parents living – this wasn’t the way of the world in the past, nor was it how we evolved as a society or a people.
We have become estranged, alienated from life’s end. And with this, likely, the customs, the phrases, unspoken responses – how to grieve, how to celebrate life.
I can still recall my mum’s discomfort at my reticence to say, ‘I wish you…’ to a bereaved relative or family friend – it was weird then and I struggle now. I know that my embarrassment at relating to the old ways shouldn’t be an obstacle to tradition. After all, it is just a few simple words, but, where do you go, what do you say when your wish is to convey something deeper, more meaningful, long-lasting than what is in effect a catchphrase?
At recent funeral of a family friend, I can’t remember whether I used the phrase; I don’t recall what I said or how I said it, whether a hug, a hand-shake, slap on the back – these events are always so filled with emotion that capturing the moment is difficult.
I guess I should man-up for the next occasion when the traditional expression is called-for, after all, it is only words, and words, whether they are weighted with meaning or lost on the wind have power and significance beyond their uttering.
65. Ice (Rouken Glen)
There is a picture of me somewhere, I must have been seven or eight, standing in the middle of Rouken Glen, which is a big green place in the South Side of Glasgow.
It was one of those winters we had in the 70’s when everything froze. I am wearing red welly-boots and a grey balaclava knitted by my mum.
And then, a few years ago, I think it must have been 2010 when I was back in Glasgow, visiting with my son who at the time must also have been seven or eight. It was another harsh winter. Cold and the pond had frozen. With ice, thick enough not to crack underfoot, able to withstand the weight of me and several others.
And as I posed my son in the same place I had stood 40 years before, I could hear criticism from the side, as more safety-conscious parents tutted and sighed at my irresponsibility, for risking the life of my son for a once in a lifetime photo opportunity.
And today, I think back and wonder whether my dad received the same criticism from other parents back then, or if, as I suspect, everyone just got on with it and tried to slide as fast as they could from one side of the pond to the other.
It is an interesting question… Applying improvement methodologies to your self.
Am I better now than I was a week, month or year ago?
For this to be meaningful, you must trim-down, narrow the options – here is an example:
Is my blog better now than last year ago?
I ask this, as, when I look back on what I wrote 12 or 24 months ago, my reflection reveals predominantly the inadequacies; what I didn’t do, what could have been better, different, or, funnier.
It has been an incredible couple of months of me – beyond home-life and work, I have attended to monumental conferences. The first, the BMJ/IHI Patient Safety Conference at Excel in London – I have described here, and here and here.
This week was my third Risky Business Conference in London.
This conference, supported by Great Ormond Street Hospital, the brainchild of Guy Hirst a former BA pilot and Alan Goldman a current Paediatric Consultant is far, far and away the most inspiring meeting I have attended, ever.
The focus of the conference is to discuss risk, performance and improvement – focussing on healthcare, reflected through other industries and professions; here are a list of some of the speakers…
Gina Miller > took the government to court over Brexit
Anthony Bennett > talked about his experiences of CPR and ECMO
Jamie Andrew > Lost all four limbs following an Alpine storm, then climbed the Matterhorn
Bill Hagan > gouged the eyes of a suicidal cockpit attacker
Paul Bonhomme > who flies single-seater planes using visualisation
Jake Moores who discussed his experiences of commanding a Trident Submarine.
The conference threatened to overwhelm and drive me into a corner – it didn’t; instead, it was inspirational, uplifting, thrilling.
The conference offered QI – doing better, improving, moving faster, quicker, slicker and safer; never accepting enough is enough, always reaching, striving for more.
And, back to my world, my little corner of Doncaster, which in comparison with Everest Base Camp (Hugh Montgommery) or sailing the Southern Ocean (Will Carnegie), seems very small indeed, tucked away in an uneventful corner of South Yorkshire.
What are my improvements, my daily hackings-away in comparison?
I am perhaps too close to the events to register the meaning, to translate how these experiences measure against who I am, what I have done and where I am heading.
Am I improving?
Is each day better than the rest, or, is my existence flat-lining?
Perhaps this is something that can only be answered in hindsight.
For most of the presenters at the Risky Business Conference, their apogee was several years before – perhaps, you can only interpret your place, the meaning behind your actions in retrospect.
Am I improving?
Does it matter if each day results in growth?
Is it wrong if day A is like B and C and D?
The sun rises and sets and the Earth spins through space; we are all mortal, we are all infinities within the enormity of an endless universe (so advised Giovanna Tinetti, another of the speakers).
Let us perhaps accept this moment in time.
Let us absorb our experiences and not measure, not count the passing time.
Moment by moment.
67. In your sleep
It is an odd notion – dying in your sleep.
Pyjamas, tooth brush, perhaps a few pages of a novel and no more.
Your eyes close and at some point, in the night, heart stops.
This is what it is to be human.
This is what it is to be alive.
Precarious, a tightrope of existence or not.
The mechanism of death – what kills you, is not important; if successful, the aftermath is for others to work-out, come to terms; grieve.
As any of us at any point, could be spending our last day on earth; we need to reflect on what is important.
Yes, there are the big things – the far-off goals that require investment; training for the marathon, your children’s education, dog vaccination; but within the immediacy of what would be left, your short-term, no-notice legacy, there is not a great deal.
If I went today, or, tonight, would I be ready?
Now, I have no plans, and I very much hope the lights-out night will come to me only in 50-odd years’ time, but in the interim, what if?
Something akin to this happens to some of my older patients when they are admitted to hospital – sure, many are sick, for others, things have just gone a little wrong, off the boil, plans awry. Perhaps a fall, funny-do, episode of short-lived breathlessness or chest pain and they’re in. In hospital, in a bed.
The moment at which my patient slips, ambulance arrives and, within a complexity of ageing, frailty and multi-morbidity, becomes stuck in the hospital, in a room, a bed, a bay, and, the system takes over.
And, that old man or woman, who hours before was pottering to the loo is now in on a journey through the complexities of a health system that few understand, with a destination of 24-hour care; never returning to their own bed or kitchen.
Just as they didn’t expect to never see their home again, so with the individual who slips-away in the night; there is no advance planning, no pre-preparation.
Some of us might have life insurance, but how about insurance assurance?
And here I come to the point at which these two concepts intercept – the unpredictability of life, the unexpected turns we are subjected to by fate and, the congruence of fatality.
The inevitability of uncertainty.
And the point?
Well, the point I suspect is doing our best to make every moment count; to ensure that what we are doing now adds value to the future, so that if or when we are taken, we accept with humility our allocation of life, without an excess of regret.
Do now, build for the future; don’t create monstrosities that you’ll regret and, don’t put-off to tomorrow, what could have been done last week or year.
Get on and suck the most out of the moment; seize the zest.
On Friday, we had a talk from Peter Taylor, Rotherham’s recently retired consultant haematologist and current deputy postgraduate dean for Yorkshire and Humber.
Peter talked about training and trainers – the ways in which the world of doctors and increasingly others – nurses, practitioners, therapists is changing, from one in which you got by and qualified by hook or crook, some with greater failings than others – the see-one – do-one – teach-one culture which I experienced, to the more modern practice of training and education as an academic discipline in itself requiring measuring and monitoring, quality control and standards.
In his talk he mentioned insight and it is this that I find fascinating.
Insight has more than one meaning. In the world of medicine, it is usually derived from the psychiatric concept relating to an individual’s awareness of their disease, for example, people with depression, at least in the mild and moderate end, are aware they are depressed, they may be in a position to see that they are unwell and need help, whereas those who are more severely affected, perhaps approaching what we call ‘psychotic depression’ lose this insight, sometimes with terrible consequences.
In simplistic terms this is sometimes used as the dividing-line between neurotic and psychotic, the former having proportionately more insight, the latter, receiving depot injections as when they are very sick they can’t see that anything is wrong.
There are other meanings to insight, such as when you stumble across an answer or a way of doing something that you have not noticed before;* I will focus here on the first form.
Insight within medicine, as I say is a discrete thing.
In talking about education and the development of doctors and nurses it relates to an individual’s ability to determine the effect of their behaviour on another – usually a patient, although sometimes relatives or colleagues.
Awareness of the emotions and feelings of another – empathy as well as the effect of your behaviour, speech or actions is the essence. If I am breaking terrible news to a patient, say, for example, that they have a terminal diagnosis, insight is critical to conveying this information sensitively.
Not all forms of communication suit all people – some want all the details, others prefer to look away and others need more time. Like all aspects of health and care the essence is person-centred, there is no one way to communicate, each interaction is unique.
What do you do if there is a problem with insight? How do you intervene if a doctor or nurse lacks insight, if, they are unaware of the effect of their words on another, that their tone although not intentionally dismissive is perceived as such? What if this leads to fear or worry – if for example, the nurse is too afraid to mention the potential drug error to the consultant who lacks insight and who is perceived to be out of reach or intimidating? Perceptions of course work both ways, it might be the trainee’s perceptions that are awry.
How do you handle someone who doesn’t get it?
People might think that surely, within the 21st Century there can’t be that many people out there with these issues – have you read my blog on arses?
People who lack insight are not bad, they are very often devastated when they discover the effect of their actions or words on others.
Usually the way to first approach this is to ask the person what they think – try to establish to extent to which there is a disconnect, then, perhaps working with feelings, as they are the only objective dimension, ‘When you say X, it makes me feel Y,’ or, ‘When you talked to Mr A, he told me it made him feel Z.’
Don’t say, ‘You lack insight, sort yourself out,’ as, that is like telling someone who has grown-up in black and white about butterfly wings – you have to work within the confines of your and the others’ mind-set.
This isn’t a tutorial in how to work with people who unintentionally upset people and, we are all different, just because I see the colour as pink and you say it’s red doesn’t mean that we need to fall-out. (And, there are certainly folk out there who upset people intentionally, again, that is for another day when I return to musing on Stalin)
Sure, in healthcare, if you are dealing with more than colour perceptions this is a potentially more significant issue, for example, the person is dying versus, we should continue the aggressive treatment, is a far more challenging concept which works both ways – the person who is dying and is saying they are dying and wants to die who is being subject to over-medicalisation as much as the person who should have the full gamut of modern healthcare thrown at them.
Essentially, we are all alone.
I have written about this before.
This is the human condition – all that we can be certain of is our uncertainty. The perceptions, thoughts, feelings of another are always alien. Yes, we are fortunate we can use our intellect, we can talk, listen, observe, although it is these facilities which are sometimes variable.
Perhaps let’s start by listening.
What do you hear? Might be a useful entry question for someone applying to medical or nursing school – is the baby contented or distressed, is the action empathetic or disrespectful? It is our ineffable humanness that differentiates us from machines, let’s perhaps concentrate on this and we can learn from one another.
*Interestingly, people are more able to achieve insight into puzzles and problems when in conditions of emotional and psychological security – like lots in life; the fearful doctor or patient can struggle to see the obvious.
I have been wanting to write this for ages, but have held-back because of the size of the issue.
You see, in Doncaster, we have been looking very closely at what is called ‘Intermediate Care’ over the past couple of years.
I will shortly explain what Intermediate Care (let’s call it IC) is – I have two main reasons for writing this– the first is because if reflects how our 21st Century NHS manages older people – particularly those who are frail and vulnerable, and, secondly, because most of the doctors, nurses, therapists I meet at work don’t understand what it is or how it works.
Frequently you will see something like this in the medical notes:
‘Waiting PSU’ – without anyone really know what PSU is (I’ll explain later), or knowing how long the waiting will be; patients consequently can be suspended in a state of not moving, not knowing why or where they are going or when.
I want to try to unravel some of this mystery here as it might help.
First, for some definition and explanations.
Intermediate Care (yes, IC), is any care (that is treatment, support or looking-after) that goes-on between a person’s home and the hospital; this therefore means the definition is broad, complicated, different in every area of the country, seen as a major way to improve care and save the NHS and, constantly changing.
This perhaps explains to some extent why many people don’t understand it.
The theory behind all of this is that most people want to live at home; they don’t like being away from their homes, they particularly don’t like being in hospital. This applies to most although not all people. Following-on from this is the belief that not only are people happier in their own homes, they are healthier and more likely to remain independent – both of which reflect the tenets of the International Bill of Human Rights – a right to happiness, health and independence.
None of us can argue with this reasoning.
It is perhaps a little unclear as to whether everyone is happier and healthier at home – the West’s solution to this has been the creation of nursing and residential homes; places where older people can be warehoused before they die.
There is much debate as to whether residential and nursing homes (let’s call them, RH & NH’s) are good or bad; most people know the model is unsustainable at it operates today because of issues such as quality of care, cost, staffing and the experience of many people living in residential and nursing homes being a model that is unlikely to survive the demographic changes of the next thirty years (when the Baby Boomers start to get very old).
This is not to say that many people currently living in RH and NH’s (usually more the former) are well cared-for, loved and supported and happy in their situation.
When my mum, for the last months of her life moved to a care home in Glasgow, although the initial ‘going into a home’ was traumatic, the experience was that mum loved the company – something she was frequently starved-of before.
I may be getting off the point.
Back to IC.
If we take as a given that people are happiest and healthiest in their own homes, as well as costing the health and social care system less money (there is some social economics here that says it is cheaper to be at home, that is, up until a certain point, when care is less expensive) – I am not going to delve into that area today.
A principle behind the existence of IC is that entry into healthcare is easy.
There are fewer aspects of modern living that are easier to do.
Much of this is predicated on the ability of our emergency services to respond in such an efficient and effective way to take people to hospital.
Chest pain, weakness down one side, high temperature and confusion – all will guarantee you a visit to hospital, potentially with blue-lights en-route.
Things often break-down when you arrive in hospital as the system is so complicated and under such unimaginable pressure (thanks for that May et al).
Because of this efficiency meeting inefficiency, older people frequently become trapped in the system.
Managing well at home until they fall, the hospital system, modern chemical analyses and radiology can detect abnormalities that necessitate hospital admission; once an older person is in a hospital bed, that is when things start to go very wrong.
Brian Dolan, a Professor in New Zealand began the now global campaign to #endPJParalysis – this is the belief that the longer a person, particularly someone who is older remains in pyjamas, in bed, the more they are likely to lose independence and functional ability (that is, do things for themselves)
In Doncaster, we have signed-up. I wrote something along similar lines last year.
What to do when an older person is in hospital and who doesn’t really need to be there?
When all the sophisticated machinery and technology of modern medicine are potentially more of an encumbrance than a support? Well, we try to get the person home.
With each day that passes, an older person in most UK hospitals will become more dependent, less able to care and support themselves and more at risk of things going wrong – the falls, pressure sores and hospital acquired infections I have discussed before.
And there is the pressure to return people home.
The pressure also relates to the ongoing stream of people arriving at the hospital’s front door, thanks to the highly efficient system described above.
The problem is, getting out of hospital is much harder than getting-in.
One example might be ‘stairs assessment’ – this is a standard physiotherapy trope that is applied to anyone who lives in a house or has stairs somewhere they live. The theory being, if you aren’t safe on the stairs, you aren’t safe to go home, so you remain where you are until we get you safe on the stairs, or, as is sometimes the case, we board-up your stairs so you can’t see or feel the need to climb them (this is sometimes done with people who are living alone who have dementia or cognitive impairment) – (again, this subject is for another day) – which makes me think of my visit to Holland.
For those people who are unable to return home – because their ability to walk has deteriorated – sometimes because of illness, other times because of hospitalisation alone, we start to think of other ways to facilitate discharge. (this is when the discharge teams – a growing body in our hospitals) get to work.
And now, this is where I intended to begin – an explanation of Intermediate Care…
The Intermediates & Generic Sybil
Let us take a generic old lady, we will call her Sybil. See above.
Sybil, after moving through the complexity that is the admission process to hospital is now considered ‘medically fit’ – for an explanation, see here.
Where can Sybil go?
Before suggesting next steps, let’s add some more detail to Sybil. (Sybil is fictional)
Sybil is 89 years old. Her husband Eddie died eight years ago. She has a son and a daughter, Jenny and Colin, who live in Ireland and London respectively.
Sybil lives in a three-bedroom house in a suburb of Doncaster.
Sybil used to work in the local clothing factory. Since she retired she has been involved supporting the work of the WI. She has friends who live close-by; many of them are becoming increasingly frail.
Sybil has type two diabetes, heart disease, asthma and bad osteoarthritis.
Do you get the picture?
She has shiny white hair which she has coiffed every Wednesday.
I won’t give you more information – I could go-on for many more pages, describing in more detail Sybil’s life, her interests, activities, worries, anxieties, hopes and fear, her health problems, the medicines, constipation; her falls.
Next steps for Sybil
Here are the options for Sybil – described in a stepwise fashion; I will describe them reflecting a generic Sybil who is progressively less fit, less independent and less able.
- Sybil after a few days in hospital goes home. She gets-back to her routine. Perhaps some help from one of the UK charities to start her up again with milk in the fridge. The voluntary sector might link-up with other services to deliver the newish concept of social prescribing – this is the creation of a plan to draw-on the various forms of support around in the form of a prescription – acknowledging that someone to talk to is frequently of more benefit to a socially isolated person than medicine to control cholesterol or blood sugar.
- It is felt that Sybil can go home – here, she requires more support than she had to begin; the concept care-packages (or, packages of care), is initiated. Potentially someone popping in once a day to ensure that all is well, home-care can go up to four or five times a day. This is means-tested, in other words, if you have the money, you must pay.
- Sybil is felt to need both support and some ongoing therapy – most places in the UK have initial short-term programmes, sometimes called ‘reablement’ – a word the NHS learned five years ago to describe the concept of helping someone return to normal with a minimum of support or interference, to facilitate independence. This is often free for six weeks.
- Sybil might already have some care (appreciate I didn’t say that above), we could therefore just re-start this or if it is felt that she needs more care, increase the number of visits – this again is means-tested.
- It could be that Sybil, after her few days in hospital has deteriorated – most often because of a change in her health and is not able to care for herself initially, even with many people visiting through the day; she might need some support at night. The next place, in Doncaster, at least is called PSU.
PSU – Positive Step Unit (which I heard last week, ironically doesn’t have any steps) – PSU is a care home in Bentley, North Doncaster which can support people who are not adequately recovered to return straight home. It is run by the council and the care is delivered by social care staff – that is, people who are not clinically trained.
People can stay at PSU for somewhere in the region of six weeks – some stay less, others longer – the intention is to optimise independence; stop doing so much for patients as happens in hospital and do more, with; help washing and dressing rather than washing and dressing, support eating rather than feed. This is central to the UK’s social care philosophy.
This is free, paid-for by the council.
You can go to PSU so long as you don’t have any needs that might require the regular presence of a nurse or, you are not too dependent (that is, need too much support) or are too confused.
After PSU, you might go home with support from carers, equally, home might not be considered safe, feasible, or desired and you may have to move to a residential home.
Residential Homes – are residences licenced in the UK by the Care Quality Commission to provide residential care for people – this is, care and support that can be provided by staff who are not nurses or in possession of professional qualifications.
We also have EMI and non-EMI Residential Homes – the former for people who are just old and struggling with independence, the latter for people who are (usually) old and struggling with independence and who have dementia. (see below).
As a significant proportion of people lining in non-EMI Residential Homes do have dementia, this distinction can be difficult to conceptualise.
Nursing Homes – as above, only the care is overseen by a nurse; there are two varieties of Nursing Home in the UK –
Standard NH – for people with complex health and social care needs to are unable to live at home – for example, a person who cannot leave their bed, who has requirement for different nursing interventions – dressing changes, catheters, and so on.
EMI NH – this old & antiquated term (Elderly Mentally Infirm) – describes nursing homes for those who have significant symptoms of dementia; there are many people with dementia in standard NH’s, it is just that they are less of a challenge to support. For example, the people because of their physical debility are less likely to get-dressed and leave the building and become lost. (as above)
Sorry for all this jumping up and down…
I started writing this a few weeks ago and re-reading makes me see both the complicated overlapping nature of much I have described as well as the repetition.
Another pathway we have been working-with in Doncaster for the past few years has is CAP – this stands for Complex Assessment Pathway. (Funnily, when describing to some medical students the history of IC in Doncaster I covered the original name for this – NRP – Non-Reablement Pathway (aka people we can’t get better or improve pathway) – it was as far as I know conceived by a manager somewhere.
What was funny to me was how obviously terrible a name NRP was to the students; I remember having to fight to change the name back then as the folk in charge couldn’t see the problem – perhaps this reflects a growing sense of understanding beyond the mechanics of medicine for our up and coming doctors of tomorrow.
CAP – this is for patients who are too ill or dependent for PSU – that is, residential care, but, who cannot go straight home (or, back to the Residential Home where they might have been living prior to their recent hospital admission) – they, then spend up to six weeks – sometimes less, often, more in one of several nursing homes in Doncaster.
As a further layer of treacle, CAP is also split, like RH and NH into EMI and Non-EMI* – that is, nursing homes for people with or without dementia; the former for people who have maybe experienced catastrophic strokes, who require support with eating and drinking, who have urinary catheters or feeding tubes, wounds or complicated medicine regimes.
EMI CAP is for people with dementia who display behaviour that is sometimes difficult to manage – again, in Doncaster – and this, I think is special to our community, we have two tiers of EMI CAP – those who have (not sure of the term…) straightforward dementia and those who have more complicated symptoms. I support the care of the latter group of patients, some of whom it transpires do not have dementia but prolonged delirium, enabling them to eventually return home.
I have left-out two directions of hospital discharge that potentially precede PSU or CAP; these are:
Intermediate Care Hospital
Our Intermediate Care Hospital – this is based at Tickhill Road; it is a site run by the local mental-health trust who also run services delivering community care, that is, district nurses, therapy and so on.
There a ward support people who potentially no longer need to be in acute hospital (that is a building that has 24/7 medical presence, A&E, intensive care) but, still need some hospitalisation. Here they patients, and I use the term patients intentionally, rather than residents or clients receive medical, nursing and therapy support, in an environment that is supposedly less clinical. I haven’t been across in a couple of years to look around; I suspect there is likely not much difference architecturally or structurally to the acute hospital other than no doctors after 5pm. The aim of this service is to support people to return to health adequately to go home; some need to move to PSU, few need to move to CAP – I suspect the latter group are usually transferred back to the acute hospital prior to any discharge plans.
Two further concepts exist, particularly in relation to this hospital which are important to understand before moving-on:
Step-up and step-down.
Step-up is when a person moves into the hospital from the community without necessarily being admitted to hospital. The idea being that as compared to hospital admission (through A&E) this is a less dramatic transfer, potentially to support those whose needs are less medical and more social – that is to support convalescence after a chest or urine infection or a fall.
Step-down is when a patient moves from the acute hospital to the IC hospital – the concept being that the level of care lessens, facilitating independence; this is not hospital discharge, as the NHS is still providing care, but, potentially without the high-cost associations of Intensive Care or round-the-clock medical cover.
And then we have our rehabilitation hospital.
This is an interesting place, situated in the Don-Valley at the site of what is still today the Montagu-Mexborough Hospital; the Montagu part is named-after the wealthy family of landed gentry who helped establish the hospital in the 1800’s (with help from miners stipends).
More recently the hospital has focused on rehabilitation, day-case and outpatient services, much of which has been supported by the Fred and Ann Green Fund – named after Fred Green, the Mexborough Greengrocer who was a founder of Associated Dairies. Asda.
We opened the Fred and Ann Green Rehabilitation Centre in 2014, with the intention of providing rehabilitation facilities to people from the local and surrounding areas.
The place is great, lots of space and big windows.
The hospital provides care or support for those patients who it is felt have ongoing predominantly therapy needs – that is physio, occupational, speech and language needs. As a distinction from Tickhill Road hospital above, there are doctors on site seven days a week, although not through the night. The notion being that the patients here are sicker than those who might be at Tickhill Road but better than those who are at the main acute hospital.
Patients leaving this hospital can either move home, to PSU or CAP beds.
There are a group of other pathways for people who have predominantly mental health needs. I won’t go into this in any detail as it is outside the scope of this document.
Essentially, the mental health teams – that is those doctors, nurses and therapists supporting people who have primarily mental health diseases – depression, schizophrenia, dementia (again, this is complicated and probably for another day), bipolar disorder, do all they can to support people in the community – that is, in their own homes; this makes sense – if a person is not physically ill, they should not be in hospital.
This all blurs when people are no longer able to care for themselves because of their mental health condition or they are potentially a risk to themselves.
As I said, I am not going into this in too much – essentially, for those requiring inpatient care (within the catchment area of older people, which in the case of the mental health world, is anyone over 65 years old), there are two facilities – the organic ward and the functional ward, for organic and functional illnesses respectively.
Organic mental health relates to diseases that affect the structure of an individual’s brain and cause psychiatric illness – this in other words, is dementia, the other functional ward is for depression and anxiety.
To my mind this is all contentious as surely all mental health is organic – relating to levels of neurotransmitters. Perhaps this is also something for another day.
Last months of life
The final cohort of patient that you might want to consider within intermediate care are those who are determined to be at the end of their lives.
I always find this a difficult area – for several reasons; it is very emotive, it is something that is outside the routine of our 21st Century concepts of living and, it is very uncertain. The notion of, ‘Doctor, how long do I have,’ ‘Four weeks,’ belongs to Richard Gordon’s world.
Effectively we split a person’s remaining life into blocks of expected survival – this is those people who we can’t establish when they might die, those who have a year or less to live, those in the final three months and those with days to live.
It seems quite simple when described in this way; when you interpret the layers of emotion, health, pain and distress intertwined with this, you start to realise how hard it can be to take a person and assign them a timeline.
I will focus on those people who we perceive are in the final three months of life. I say three months, as anything more or longer, likely flows down a separate health and social care pathway.
If you have disseminated cancer, advanced dementia, or are frail to the extent that you cannot walk, eat or drink, most people would consider it appropriate to determine whether you meet ‘fast-track’ criteria – these predict whether you will live for three months or more.
If you meet these criteria (which are determined by some science, some experience and some guess-work), the system deems you to require Continuing Healthcare – all your care, treatment or support is considered to relate to health – the NHS therefore support wholly, without dependence on the social care system (although the social care system might provide physical support), the mean-testing I have mentioned above is kept-out. The NHS pays for all your care and treatment.
This in many ways is fantastic – it enables people and their families to focus on care and support in the last few months of life, rather than completing complex documents require of social care. People who are in the last months of life do not need to undertake a journey through PSU or CAP or any of the other steps that lie before an other older person who has found themselves in bed in hospital.
As to whether you meet the criteria as I have described, is a little grey and one person who receives the full fast-track service might have the same needs as another individual who must follow the confusing journey I have described above, to leave hospital.
I appreciate this document is not for everyone – I intend it to accompany some of the teaching I provide in the hospital and there are likely some errors of fact, for which I am solely responsible.
We are constantly working to refine the ways that people, particularly those who are older and frail interface with the health and social care system.
All this is increasingly difficult because of external pressures, predominantly from the government which has a certain trajectory, which, to many of those in the system is at odds with the best interests of those we support.
The system will continue to grow and expand, new ideas will be conceived, new ways of considering how we keep ourselves and our society and sanity together. If we continuously think people not patient, put the person first and the system second, we are likely to improve.
Anyone who feels I have wrongly represented or interpreted the system, please, let me know and I will amend. We are all seeking the same things – to care and be kind, to support, sustain and move forwards.
*Possible subject for next campaign name & concept change after we have addressed pyjamas.
You wouldn’t necessarily link the iPhone with existentialism, but, there you are.
The philosophy connected with our sense of purpose, place and meaning, so beloved of Sartre and Camus has led to our place in the modern world; staring at a pixelated display, where the manufacturers do their best to shrink technology to such an extent that it almost looks real.
Real, but not.
There is a magic associated with newness – the sense of anticipation, of novelty, unimagined or unexpected, is what fuels the Apple engine. Hapless millions tune-in, hoping for a sneak-preview; something that stretches the concept of what is possible.
It began ten years ago.
And we anticipate; we count-down the days, hours, minutes until… our birthday, Christmas or whatever. We measure the moments, revelling in the anticipation of what the novel might mean to our lives.
New car, phone, kitchen, holiday; it doesn’t matter. All possess a sheen that is unique, particular to the unpossessed.
And suddenly it is in our hands; we have the tech, gadget or item of kitsch.
We hold it, no longer a dream. We measure its dimensions. Check ourselves. Is it, can it, is? We look back, offer ourselves reassuring glances. Yes, it is…
Day one turns into two, then the first week and before we know it we are caught-up in something else; either looking forward to something else or distracted by the demands of our family or work.
All competing for our attention.
What was once new, shiny, is now tarnished, chipped, broken.
We become accustomed to a new new and we get on with it.
We accept that this is it and what was once our prize is now our thing, as much a part of us as the hole in our sock.
We grow old, age, deteriorate, as all things must, as everything new becomes past.
And, perhaps the ideal is to consider that new is not new, but just different; and difference can be perceived wherever we go, no matter the place.
71. It flows down
It flows down. I have been sent to find out how many beds you have available in your department. How many discharges. How many people can go and are going. How many people are waiting to move to A or B or C. I don’t necessarily want the details, I don’t want to hear excuses or things gone wrong or waiting for this or that, I want to hear when there will be a bed, I need to move from the trolley in A&E to the bed in AMU to the ward to the rehab to the home to home and I am adequately detached from the end or net result to be too concerned about whether Mr A or Mrs B or C don’t quite make it and have to come back three days later via blue-light ambulance as they were sent home too soon before everything was sorted-out, and hospitals are like pressure cookers – a point is reached beyond which nothing helps but blowing the whistle and you have to be careful that you don’t make people make decisions in haste that result in harm for what is the point of being able to save a life one day only to screw up the care two weeks later – the journey is one, it is all connected and whatever happens in one part has knock-on effects on another and I really do believe it is the mind-sets of those trying to lead or deliver results or achieve targets that once distorted become difficult if not impossible to unravel; untangle like the metabolic pathways of addict’s brains, like the grooves worn in ice or grass flattened sheep paths, we run, we run down one alley and even though it is the wrong direction, it is at least somewhere to go, it is at least perceived as movement in one direction – despite the reality it might be taking you in reverse, you keep going, you keep going, deluding yourself into the belief that as you are busy, as you are occupied, you are doing and doing is good, for the alternative, not-doing is unacceptable and must be challenged – it is the action which cannot be spoken-of, it is the management plan, process, strategy, task and finish, executive board decision that makes everyone feel better as there is a sense of something being done even though that which is being done is closer to destruction than creation, even though those who get in the way risk becoming new victims of the analysis, becoming statistical anomalies of health or social care and everyone wants to do the right thing – this isn’t about bad people being malicious or wanting to stir-up the dirt or slow down the improvement, this is well-meaning people, well intentioned, usually very bright and inspired individuals who a little like rabbits in headlights don’t quite know which way to turn when the car approaches at speed out of the darkness and you go left or right or stay where you are & the results will be the same, so why I guess, worry, why not let it flow over what you experience, let it drift over you, lie low, and wait for the seasons to change – this is self-preservation and so long as you are able to hold-on to your little clod of earth, to maintain adequate input, output and turnover, you don’t have to grow or change or look for a way out, you will get by and the growth or attrition or change takes place at such a rate that no one really notices, that no one is aware of any encroachment. We move right, we go left, we wait, to move forwards, no one is looking, no one cares, for everyone holds at their own private centre. Centre. Stay centred. Stay sane. & breathe.
72. It’s hard not to be rude
It’s hard not to be rude when you listen to the news.
Headlines from the Conservative Party telling GPs that the answer to the problem* is their opening longer hours. (*not that there is a problem)
I mean. Come on.
It is not GP access that is the problem. It isn’t even the junior doctors who labour defeated in A&E departments across the country. It is the dogged approach to where money is directed.
As my last blog said, we are rich. We have the fifth largest economy in the world. I mean – that is, people driving around in too big cars and living in too expensive houses – we have a lot. Sure, not everyone can amble around Waitrose on an empty stomach; but we have multitudes.
The origins of this word come from biblical times. In the Temple in Jerusalem, the priests would sacrifice the Paschal Lamb – the scapegoat. This was the animal sacrificed instead of a person. Burn the lamb and God will be happy. God will think that the lamb is the people saying, ‘Sorry,’ and, all will be forgiven. Tabula rasa.
It is a form of bullying.
Hitler blamed the Jews for the ills of society and the rest of his country followed in the wake of WW2; Trump blames the Mexicans or the Muslims and voila. Let me see who I can blame to take the pressure off me…
The thing is, within the mixed-up world of healthcare (I am leaving social care out of this), blaming the usual suspect doesn’t get you very far. I might blame the pain my patient is experiencing on a broken rib – if they have a clot in their lung instead, the outcome will not be good; if I prescribe drug A instead of B for condition C instead of D, my patients won’t recover.
Let us apportion blame and responsibility at the doors of those responsible.
Our current crisis relates to the government draining funds from social care – that is, councils across the country, in a bizarre attempt to save money.
Not only is the money allocated to councils squeezed; the funds provided to those delivering healthcare is left to stagnate.
The wheels keep turning – there is always more business and if you take from Peter, who robs from Paul, you are no further forwards.
A zero-sum game.
Let’s not blame the GPs. Let’s not move the responsibility to the doctors or nurses who wake and head to work with a sense of calling – a summation of what it is to be human.
Let’s go after the real baddies… avarice, greed, ego & accumulation.
73. Just by looking
Can you tell if someone has dementia just by looking?
I sometimes put this question to medical students. I am always fascinated by the answer.
Everyone knows that you can’t diagnose by looking (historically clinical textbooks have included signs – the hands of Acromegaly, the flush of lupus or, the drooping eyelids of Myasthenia.) – medicine has veered away from this approach given that we now live in times more accepting of diversity.
Some of us have big hands (or abnormally small ones, Mr T), high colour and droopy eyes and are in perfect health. Attaching a disease to a look can be dangerous.
But, there is something in it.
I can usually work out who has dementia or cognitive impairment when I am on the admissions unit at my hospital. People with dementia are more likely to be in bed, wearing pyjamas, and, not obeying the buzzer rules. They are more likely to have a sippy-cup, not have eaten their meal and have cot-sides-up during the day. (We are working to fix this through #endPJParalysis).
I suspect part of this is the damage inflicted on doctors in medical school where we are taught to be vigilant, to utilise our Sherlock.
The empty inhaler box… asthma, diabetic jam, waking stick, hearing aid. Part of understanding how we can help our patients is by enhanced communication, that is, using what is not being said to explain what is.
The other week I met a patient, we discussed her fall – what had led-up to her coming to hospital and so on; there was nothing out of the ordinary. It was only afterwards when reflecting on our conversation, I considered that there was something not quite right with her speech or manner. I therefore did what doctors do and assumed there must be more afoot; not a straightforward trip, slip or tumble.
I organised a CT scan. It showed cancer.
In Malcolm Gladwell’s book, ‘Blink’ he describes the value of reflection, intuition and non-linear cognition. We all operate at a highly evolved conscious level of thoughts and ideas – we also have within us a deeper, more atavistic sense which connects us to one another.
When one of my patients is anxious or sad, I cannot necessarily fit them into a set of pathologies, I can’t always articulate what I am feeling, but I have a sense that something is not right, just as is often the case, my patients (and very often their relatives) when ill can have an ineffable sense that something is wrong.
Whether we call this intuition, experience or the unconscious, I don’t know, most of us, when given enough time and space, away from multimedia distractions and work-pressures are able to connect in this way.
And, to the point.
I originally wanted to open this by talking about Billy Connolly’s recent DVD – High Horse Tour.
Billy has Parkinson’s disease and he covers some of his experiences in the set.
It didn’t take me long to see his bradykinesia. Unlike many with the disease, Billy has a form of Parkinson’s that slows-down his movements more than causing the characteristic shakes. I remember watching Billy years ago where he would stride across the stage, using his arms as legs as part of his Big Yin persona. No longer.
Sharp as a tack and as mentally dextrous as ever it was fantastic watching him (with very strong language) in action, he has lost none of his wit.
And back to the original question. What can you tell from looking?
I guess, very little.
You can skim the surface, leave with impressions or intuitions – it is only when we delve deeper, question, talk, chat, joke (smile) that the complexity of who and what we are comes across.
Don’t rely on a look to tell you the answer. Sure, reflect, weigh and integrate ideas and impressions, equally, do not base your management solely on the facts on the page, ensure you are aware that there is far more to every person than their sodium, potassium or haemoglobin level.
The next time a smart young doctor quotes an obscure study in the New England Journal of Medicine, slow down, insert a pause; ensure that they also have spent a moment connecting with something deeper.
74. Length of Stay
There is an obsession within healthcare about Length of Stay – usually shortened to LoS.
In general terms, the shorter the LoS the better, although in some situations, if the LoS is too short, that can be a problem too.
For every disease, condition, treatment or ailment that requires a person to spend a period of time in hospital there is an associated LoS. Elective hip operation 48 hours, fractured hip, 7 days, pneumonia three days, stroke seven, and so on.
You name it and there is a corresponding LoS.
There are complicated calculations that sit alongside these numbers – for example, the LoS for a one-legged man who breaks their hip is likely to be longer than an otherwise able-bodied person (for obvious reasons). These sums tend to translate to complex payment system calculated both in the NHS and around the world.
If we keep things simple, imagine two people, both similar ages, with not too many other health conditions, both of whom contract pneumonia.
If person A, let’s call him Marcus is admitted to hospital F, let’s call it Farflung, and stays four days before returning home with whatever additional support might be needed in the community then the LoS if four days. Everyone goes home happy.
If however, person B, let’s call her Gloria is admitted to hospital O, let’s call this one Outskirts, and stays eight days before she is released home, the LoS at eight days, double Marcus’, suggests that either Gloria was more unwell than Marcus or the systems and processes at Outskirts are not as good as at Farflung, which has managed to address delays and obstacles to care potentially encountered at the other hospital.
At Farflung, they may have consultants working seven-days a week, they may have rapid access to diagnostics, their safety profile might be better, there are endless possibilities.
Gloria might fall on her first day in hospital, she might receive the wrong medicines, her x-ray might be misinterpreted. She might be infected with an unusual bacterium that doesn’t respond to the initial antibiotics and requires two courses; the possibilities are endless.
Yet, in the eyes of the system four is good, eight, less so.
Four is even better as that means you can treat Marcus twice for the time you treat Gloria.
In terms of system efficiency, Farflung is 2x as efficient as Outskirts. The treatment cost half as much, or double, depending on who you are looking at.
The systems used by hospitals are however far from adequately sophisticated to analyse at this level of detail.
One might assume that on average, all things being equal, if Farflung and Outskirts are both equivalent in quality, effectiveness and care, the average LoS for 100 people like Marcus and Gloria would balance at four days – with Gloria being an outlier, or, perhaps six days, as Marcus was actually a miraculous super-healer.
Equally, Farflung might be in a prosperous area where there are many affluent patients who present early, don’t smoke, look after themselves, and, have good support networks to facilitate early discharge, whereas Outskirts is less so, with folk less aware of health issues, smoking more, presenting later, and so on.
You could probably write an entire Tale of Two Hospitals about Farflung and Outskirts, demonstrating the similarities and differences of the two.
When it comes down to it however, these subtleties I have described are often lost in the system and regardless whether one is better than another, more efficient or effective, the staff more dedicated and caring, whether a week after going home Marcus is back again because he had the same infection as Gloria but did not receive the same appropriate mixture of medicines, we don’t know (this, we call, readmission – again, something for another day.)
Humans tend to be as unsophisticated in their analyses of systems as the systems themselves are complex.
We see a number, fixate on that, generalise and imagine, ‘Four good, eight bad,’ or, the inverse, again, it depends on your point of view, or, it could be that when Marcus returns to hospital, in a worse state than he originally presented, he stays for two weeks; yet, the Four sticks; the 14 of the second admission become lost in the arithmetic of the accountant’s ledger.
And what is my point?
Is there a point?
My point is essentially, that the sledgehammer used within the NHS to measure good vs bad, with LoS sitting at the head of the tree is inadequate. It is blunt, amenable to manipulation and confabulation. It can be embedded within a myriad of other factors which are either unavailable or unknowable.
LoS, LoS, discharge, discharge…
Like a crazy mantra that takes you to the same place as Nam Myoho Renge Kyo – in other words, in circles.
The repetition creates tension that does no one any good.
My message – consider LoS to be important although no more or less than the other measures, the other means by which we determine effectiveness. Just because something can be translated into a number ‘21’ doesn’t mean good or bad; it is quantity and quality; one without the other is a weakened structure that does no one any good.
When in doubt, go to the people, listen, hear, feel.
75. Let’s pretend
Let’s pretend I know more
than you know about me.
Let’s imagine I can think-up
generate in my mind’s eye
scenarios that you don’t realise to be possible –
a little like I am running at full speed and you are ambling.
45 vs 78
distorted, but not enough for anyone to worry
or call-out, call foul, shout for a penalty.
I can see a little bit further into the future
I can see around the corners
that are mostly obscured
that to you are just things
but to me are more than, that are.
I can jump from a cliff across the ocean,
That I can take a breath and draw-in the world
all memory, past, experience present and future.
I will laugh.
I bet I will
and what expression will pass over your face.
Happy or sad
It is just a game
where we each must accept
there is no first or second place
there is no better or worse
There just – is
we go, we stay, we hope or wish.
Twisted and tangled
We one day will come together
and find a solution
of this mess
Whilst there is time, gain the advantage, take cover and move with stealth.
If you don’t, if you do not, who is to know
76. Long lie
I was talking with the medical students yesterday.
They were presenting their ‘long-cases’ – this is when a student doctor or nurse reviews, examines and presents a patient’s story to me.
Two of the cases related to older people who had fallen at home and become stuck on the floor.
In the word of medicine this is called a long lie.
As to how long you must be lying on the floor for your lie to become long, is I suspect relative.
Some long-lies can be very long.
One of the patients who fell, as described by a student, was on the floor for six hours before she could struggle to her feet; the other lay on the floor in his house for two days before neighbours alerted the police.
This says much about the place of older people in our society, and their associated frailty, fragility and vulnerability.
I guess the two patients were fortunate in that their falls did not result in hip fractures – that would have made everything several times worse; yet, let’s consider the experience of the man.
That is a very long time.
I don’t think I have done anything in my life for that long. I suspect there must have been times when he fell asleep, nodded-off on the carpet.
Everyone who finds themselves on the floor for this long developed several forms of trauma – the first which likely develops very rapidly must be the psychical trauma of being on the floor, unable to get-up and thinking, ‘How long will I be here?’ ‘When will someone come to help me…’ ‘What if I die like this.’
Traditionally, for people living in flats or semi-detached houses, they will bang on the wall; that must offer some sense of determination – a hope, that someone will hear, respond.
If you are on the floor in a detached house or bungalow, what is the hope?
The postman might come – how inquisitive are posties these days? Your son or daughter might phone; what if you don’t have any family? What if the family you have don’t either bother with you are have the ability or interest to maintain close contact?
You are stuck.
Before long, you will be incontinent; well, you will either need to go to the loo and let go which will result in becoming wet then sore, or, you will not go and you will get stuck – a condition we call urinary retention – where you cannot go. At all. Urine is stuck inside your bladder and over hours your kidneys swell then stop working; if you are stuck for long enough, your skin and muscles will become damaged and break-down – this is a further trauma to your kidneys, which will then fail.
Wet and sore then cold.
We give some of our old folk a hard time – financially economising – heating switched-off to save money.
Wet and cold and sore.
And they might bang or shout or cry or lie silently trying to work-out what to do, how to save themselves, for, no matter how old or frail, most people have a connection to life that is tenacious – the fight to live. Most take a while before they give-up.
At what point does your thirst become an issue?
Cold, hungry and thirsty and, your muscles and skin are breaking-down because of the prolonged pressure. And you are afraid and wet and you do not know when or if anyone will come to get you. Will you die like this?
Loneliness is not a new concept; some of us like being alone – we seek solitude; this is however different. Solitude is a choice. Thoreau walked into the woods of his own volition.
Loneliness, that is, social isolation, not seeing or talking to another human for days at a time is a modern-day construct, a symptom of our ailing society.
It is hard to conceive of a grandparent falling at home 200 years ago and being left.
Sure, there has always been the occasional hermit or odd-bod; loneliness and social isolation is a 21st Century epidemic which, when tied-to falling and frailty, is a significant problem.
And the old man or woman, alone, isolated, long-lying, this perhaps adds a dimension of despair to the experience, to the trauma.
The consequences of a long-lie are significant – this can be the end of an older person living independently; the acute and post-trauma can have a devastating effect on an individual’s sense of self, sense or worth and autonomy. The experience likely echoes throughout the rest of their life.
I suppose the question we must ask, after we have learned about long-lies, older people living alone and social isolation, is, what can we do?
Just think; there is almost certainly an older person somewhere in the UK, possibly even along the road from you who is now stuck, trapped.
My friend Mike is helping to break-down some of the islands of isolation that are growing in our society – please check-out B:Friend. This is not necessarily a panacea for loneliness, social isolation or long-lies it is however a significant position statement on society and the trajectory we should all be following if we choose to support a society that is loving, person-centred and kind.
77. Look, over here.
There is a door;
I won’t call it a gateway,
The electronic lock has malfunctioned.
Off you go,
Yes, that way…
She immediately stepped into the wardrobe and got in among the coats and rubbed her face against them, leaving the door open, of course, because she knew that it is very foolish to shut oneself into any wardrobe. Soon she went further in and found that there was a second row of coats hanging up behind the first one.
Off, to wherever you want.
Magical transportation that cuts-out the social-care assessment as middle-man and destroyer of hope, that fast-tracks you to your home, or even, manipulating the magic of time and space, takes you back to that happy place, July in the garden with mum, baggy shorts and old Celtic top, spinning though the moments of tot squeezing into the living-room chair, snuggling, kitchen table Friday night smells and wooden floorboards creaking under tired carpet.
Back, back, to the farm, the milk round, back, to the days before the evacuation or the sirens, back to the place of comfort where mum and dad and baby are safely waiting.
Here it is, the bus to Upton.
Stuttering stop-start moments that are the present, your children, gathered round, concerned, smiling, vulnerable; the uncertain fight between independence and being locked away with fifty other old men and women for your last days.
And, back with the doctor, the nurse, holding my hand as we negotiate the corridor, the dayroom, flower-bed, sensory garden.
Is it any wonder your frustration is occasionally perceived as anger and my compassion as hurt?
78. Magic money tree
Where is the tree? Has it been chopped-down?
There are two versions of reality – the view that we don’t and can never have enough (the no MMT one), and the version of plenty, where there is no MMT, but, there are all the amazing things around us.
My daughter was surprised this week when listening to the leaders debate with Mishal Husain, that the UK has the fifth largest economy in the world. Yes, we, as a society have more wealth than almost all the other countries on the planet (the remaining 97 per cent).
But, there is no MMT.
Yet, when it is wintry outside, the snow is falling and A&E departments are overflowing, a hospital corridor becomes a reasonable source of accommodation for a 93 years old, yet, those leaving university with a better or worse degree are indebted to hedge fund managers for the next twenty years;
No MMT is seeing that we have little, when in reality we are overwhelmed by surplus – too much choice, too many daytime TV shows, cheap sugary lipid-laden drinks and treats. Too many car journeys and foreign flights or heating in the winter.
Perception is everything.
You look slim or fat or OK – it is perception; and perception is relative, it is also created by the pervading winds. Listen to someone telling you how stupid you are and you’ll eventually believe it, listen to the narrative of weakness, laziness or failure and soon enough you will adopt that mantle.
It is not just the condescending use of the MMT concept – not just that the arrogance is not something I would direct towards my children when they ask for more, it is the position of someone who is so detached from reality that they cannot perceive the viewpoint of the other, where their perspective is skewed to the point of perversion.
And back to the nurse who enquired about her year on year reduction in earnings at a time when moments later she is told the economy is booming. Booming sound-bites that I dearly hope people can see through.
I think back to Laurel and Hardy… That’s another fine mess you’ve got me into… The current government, which is still inveigled by the post-Cameron, Johnson and Hunt nastiness has handed our society a whopper; the post-Brexit mess that threatens to emasculate and diminish the society that they tell us is poor, but which we all see as being rich, rich from the contribution of migration and rich enough to accommodate any number of people in need, rich to the extent that the xenophobes should pack their bags and go back to their ancestral homes.
Balancing plenty with the communiques of austerity will be a lifetime’s work; I guess my prayer is that the MMT continues to flourish, has deep and strong enough roots to allow us to maintain the standards of living which we take for granted.
Look! Car, clean water, shelter, supermarket, education, health, social security – the MMT is vulnerable; let’s take back ownership.
79. Maimonides and Bruce Lee
What links the 12th Century mystic/philosopher/physician with the 20thCentury martial artist/philosopher/actor?
They are joined through their philosophical interpretation of improvement, learning and growth.
This all started with me writing about a recent incident at work and was followed by a discussion on quality improvement and learning.
If you step sideways, you can connect the ideas behind ‘Teach thy tongue to say I do not know,’ and Bruce Lee’s philosophical tale.
As to who originated the story I don’t know, this is the essence:
Enthusiastic student, after travelling for many years finally reaches the Master’s house hidden in the depths of a forest.
‘Master… at last I have found you – how wonderful!’ He proclaims, ‘I have been searching for you for such a long time… Please teach me your ways.’
And so, Master starts to explain his philosophy.
Before he is able to complete even the first sentence the student interrupts, ‘But, Master, I have been taught like this,’ or, ‘Isn’t it easier if we…’
After some time, the Master becomes exasperated. He thinks to himself – this guy is so smart, it seems he want to teach me!
The Master then calls for tea.
The student, still full of energy and eagerness, happily accepts; he holds-out the cup and the Master pours the fresh brew.
He pours and fills the cup and continues pouring. The tea overflows. Yet, he keeps pouring.
‘Master – the cup is full! Stop!’
The Master responds, ‘The value of the cup is its emptiness, you cannot learn unless you also become empty.’
And so, the connection.
It is not enough to ask the question. We must also be responsive to the answer.
Don’t just arrive at the class – listen.
The noise and mess of our pasts can drown any sound of tomorrow.
I do not know.
My cup is empty.
Let us break bread tonight.
Maisie lying next to me.
I look at her black spot,
the mark that covers most of her right shoulder and is shaped,
like an island
Where was she before the rescue?
What did she look like as a puppy, staggering about her mother’s den?
I saw another Maisie on Thursday – she was a different dog at a polling station somewhere else in the country.
Maisie – we named her after the character at the end of War Horse.
She comes when you call her, unless, she is off running, mind focused on some faraway rabbit, or memory.
First to greet, last to watch you depart.
Never bitter, never sore; always there.
And this perhaps explains, my antipathy towards ‘No Dogs’ signs.
Bound for Paris
I meet Marina.
She is slim, dark haired and Palestinian.
Her uncle has something to do
With the PLO.
It is 1990.
I visit her apartment.
Tired from sleeping in the open,
From too many train connections.
She fades into the distance.
82. Martin & Worms
I just watched a documentary about Martin Luther. It was narrated by Liam Neeson.
Here I am, and, being honest, as I always try to be; until two weeks ago I didn’t know who Martin Luther was. To me, the only Martin Luther was Dr MLK Junior. I knew there had existed at one time a historical Martin Luther, at a stretch if you had pushed me, I might have been able to guess that he something to do with religion. As to what he did and the effect he had on society, and likely me, sitting at my computer today, I couldn’t have told you.
Martin Luther was born on the 10th of November 1483 in the German town of Eisleben. In his early life, he was a keen student and at the behest of his dad studied for a degree in law at the University of Erfurt; before he qualified, he had some sort of revelation which was further strengthened when he was caught in a storm; he dropped-out of university and became a monk. (As you do…)
I won’t recount the rest of his life as, if you are interested you can check the Wikipedia page yourself, or, listen to the Dan Carlin episode on Munster which gives you some background.
Anyway, the point is that Luther determined that there was not only corruption in the Catholic church (I am not going in to this either as I don’t want to use my ignorance to offend anyone), specifically in relation to the granting of indulgenceswhich were blessings you could buy to guarantee your entry to heaven. You could, even, leave indulgences in your will, so that if your ungodly life ended unexpectedly you would be OK – like an afterlife insurance policy (this was during the Black Death, so death wasn’t that unanticipated).
As I said, I don’t want to (and, can’t) go into the details, although it was also cool that Luther, during his time in seclusion at Wartburg Castle, translated the bible into German so regular folk (like you and me, could read the stories).
The point to me is that he had the nerve to stand-up to the entire Catholic Church, which was the dominant political and religious force in 15th Century Europe and express his opinions about free-speech and an individual’s relationship with god. (Whatever god is or isn’t).
What an interesting period in history.
And the connection between this story and almondemotion? Well – frequently, in my experience, it is the accepted norms, the groupthink or prevailing opinion that creates situations where patients are at risk and creativity is stifled.
We humans have a propensity to enter into a certain way of thinking and stay there indefinitely. Yes, Ignaz was right, you wash your hands and fewer people die. But, if someone is dying in front of you, washing your hands is not necessarily the most important thing. It is priorities and perception.
Luther, I don’t feel, quite understood the power of his words. When you shine a light on a different approach or methodology, prepare yourself for the consequences.
Some folk are waiting for the Matrix, for a holographic universe, others are content with the cricket.
I am not saying that either is more important.
But, hurrah to Luther for ignoring risk to himself, hurrah for standing-up for his beliefs. That is what it’s about.
Acting this way can be good – it can be bad; it can slip into fundamentalism. Yet, to me, the alternative is so benign, so vacuous, we have to do something.
83. Me, we, dementia and Donne
This year the Dementia Action Alliance, released a new set of ‘we’ statements relating to dementia.
This was a significant change in the way a disease – dementia is approached and considered. The statements were generated through discussion and consultation with those living with dementia and those supporting them.
Here they are:
We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.
We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.
Disease, although it primarily affects the individual does not stop with them; it occupies a place central to friendship, family and society.
Dementia is a disease of neurones, one brain cell at a time malfunctions, with time, spreading to the whole person.
None of us live in isolation (beyond the Nietzschean idyll) – I link to you who connects with me; I become us and we.
Perhaps this is an approach that should be taken to all disease – moving the expectation that whether you have eczema, asthma, diabetes or cancer – the monad of me alone, suffering in silence is not what we are about.
We, that is us, the human race, evolved to live in groups, societies, collaboratively, supportively – if we allow disease to affect just individuals, to peel them off from society, in the words of Donne, then Hemingway, the bell tolls for thee.
My hay fever affects me; it is me who is sniffing and snuffling through the night, yet, it has affects beyond my person, it reverberated throughout the household.
My arthritic knee, or back or neck, causes me pain, yet, the experience ripples through my family and friends, it changes the dynamic.
Grenfell tower is a representation of me and we; me – the mansion-house owners of Kensington, somewhere in the world, living it up, their empty houses abandoned yet secure with the latest burglar and fire alarms. And, down the road, the people packaged into minimum square-space existence.
Brexit is another example of this approach; I am fine, thank you very much; We isn’t something that is part of the equation – you, you foreign, dark-skinned migrant, refugee, asylum-seeker are not part of we, you are peripheral to who us.
The irony of the justification for TM not meeting victims of the fire because of concerns over her own safety.
The irony that so long as I have my car, my holidays, pension and day-time TV, things are alright, don’t bother me with the trivialities of Mogadishu or Damascus.
The we statements represent a shift, a movement away from me to us, from them to we;
Caring, considerate and compassionate – these are principles held-up as central to the treatment and support provided to our patients, by the doctors, nurses and therapists.
Don’t peer to deeply inside; it’s not just about the medicine or the tablet, it is the relationship that counts.
This spills-over into patient safety; when I am considered, alone, when my troubles or worries are allowed to dominate the narrative, when I forget that my place is to care, I risk forgetting the ‘we’ – I risk not seeing the patient, who by extension is me.
Person-centred care – seeing the person as central to the discussion or debate is, as relevant as seeing that the person you are treating is you, could be you or, your mum or dad, brother or sister.
Once this shift, this change in perspective has occurred, nothing can ever be the same.
We not I.
Us not me.
84. MEDICALLY FIT – TODAY AND TOMORROW (3)
You hear this term all the time nowadays, at least, if you work in an NHS hospital, are an inpatient or carer or relative of someone who is occupying a hospital bed.
Are they medically fit?
When will they be medically fit?
If they are medically fit, have you done the take-home medicines?
And so on, you get the idea.
It is all to do with the proximity of the patient – person – usually older, but not always, who is occupying a hospital bed and their exit from the ward/unit/department – this in turn will allow for another patient/person to swap places and allow flow.
Flow is another word that has become bastardised by the NHS.
Flow in its original form as described by Mihaly Csikszentmihalyi is a state of mindful occupation where an individual exists almost outside of time and space in a bubble of creativity or doing.
Flow nowadays is how many patients are moving round the micro (hospital) or macro system (entire health and social care network).
Critical to flow is medically fit.
Too many people who are not medically fit, and you have a problem. People keep arriving at the front door and not enough are exiting stage left. Things become crowded.
It is funny. Just a few years ago we used to talk about hospital bed occupancy; there was considered to be an optimum level – somewhere in the mid 80 per-cents, which allowed for flexibility, accurate and appropriate allocation of patients to specialist areas, now, the system only exists at something like 100%.
Like the rush-hour Tube – bursting at the seams, the last person squeezed-in as the doors shut.
An overflowing train may help move people, it might even earn Virgin Trains lots of money, it isn’t however much fun or pleasant for the folk who are knackered, leaning against the toilet door on the six-o-five from Paddington.
We know the reason for the obsession with medical fitness (which I don’t think I have explained, but, you can read more here and here.) – it isn’t that there are not enough hospital beds (although some people would disagree), it is not that the system isn’t slick, effective and efficient (after all, isn’t that the essence of the NHS?), it is that we have lots and lots and lots of older people who have nowhere else to go when they fall or become sick.
And, you ain’t seen nothing yet, as Bachman Turner Overdrive might have said in the 70’s.
The baby-boom generation are still babies. Still young, fit, healthy, vital. Leading independent, productive lives, net contributors to society and the economy.
Take a seventy-year-old, make them 90 add three or more long-term conditions… diabetes, arthritis, dementia, cancer and, you have someone who is potentially frail, existing in a precarious state where the health and social care system has a greater impact.
This is the world of today and will be the UK in 10 or twenty years.
The system is not coping now, how will it manage tomorrow?
Again, there are likely enough hospital beds, it is what is before and after that is inadequate – an older man who falls, bangs their head and can’t get off the floor. This happens all the time, countless times every day across the country. The system often struggles. The standard –
Fall alarm > paramedic > hospital
Breaks-down as the fingers of medicalisation examine and dissect the man, checking his blood pressure and oxygen levels, scanning his brain and testing his urine, the encroachment of a disorganised health and social care system reverts to what is best for the system and risks a flip to ‘not medically fit’ with pyjamas, lost dentures and more investigations.
And, that man who fell, becomes trapped in the flow, moving around a system which is under extreme pressure, and, as with all pressurised systems, the risk is that he will become first systematised, then crushed. Boxed-into a diagnostic formulary and processed.
And the systems that perhaps overzealously brought that man to hospital, despite their usual, although variable efficiency, will break-down when we try to find somewhere for him to go, now that he has acquired a urinary catheter, delirium, hospital acquired infection and increased dependency.
Is he medically fit?
Home? Intermediate Care (Neverland)? Care Home? Rehabilitation?
You see the problem?
He probably can go home, but, the issues that were present before he arrived at hospital, that potentially led to him falling at the outset are still evident – loneliness, social isolation, lack of community.
He sits in his chair, smiling carers, not necessarily focused (or, obsessed as they should be), with his wellbeing popping in an out.
We didn’t evolve to be 90 and sitting alone for 22 hours a day.
We didn’t probably evolve to live to 90, but, that is where we are, we are unlikely to develop a healthy adaptation to a solitary existence which would kill us when we are 40 or 50 years old.
Strip society of community, every person for themselves, Right-Wing dogma and you are left with this fragmentation.
Are they medically fit? They were never medically unfit – they were just socially isolated.
I sometimes think back to my mum’s last months of life, where she was supported in an amazing care home in Glasgow.
My mum, the inveterate talker, the person who thrived on social company and interaction, who found new friends for the first time in years after a slow deterioration from the isolation of living alone.
Were my mum to be within the system nowadays, for all the improvements, all the realisation that person-centre care is the only meaningful care, she would likely have been swept-up in the drives of efficiency to maintain independence (no matter how little was possible or desired), she would have moved or been moved around health and social care, flowing, probably unhappily, becoming more disorientated with each transition, until eventually all options were exhausted and she would be left with care. That is, long-term care, the Holy Land.
You see the disconnection?
Medically fit, pressurised bed occupancy, older people trapped in systems that don’t work and there you are, lonely.
We are social creatures.
Aristotle, quoted by Nietzsche said that to live alone one must be either a beast or a god… well, you probably better add the growing numbers of older people to that list, for that is the picture.
I hope this hasn’t been too gloom and doom, particularly for those of you reading this on Saturday morning, where here in Doncaster the sun is shining.
We are doing great things locally to redress this imbalance, you can go here to check out more!
85. Medically fit
Medically fit, it reminds me of the Officer Krupke scene in West Side Story…
A-RAB: (As Psychiatrist) Yes!
Officer Krupke, you’re really a slob.
This boy don’t need a doctor, just a good honest job.
Society’s played him a terrible trick,
And sociologic’ly he’s sick!
I am sick!
We are sick, we are sick,
We are sick, sick, sick,
Like we’re sociologically sick!
A-RAB: In my opinion, this child don’t need to have his head shrunk at all. Juvenile delinquency is purely a social disease!
ACTION: Hey, I got a social disease!
A-RAB: So take him to a social worker!
I’m socially diseased; my existence is based upon the analyses, schedule and planning of someone how knows little about me, but, because of circumstance – position, occupation or employment, they have the ability to degree… medically fit.
Medical fitness is one of the last vestiges of the physician.
‘This man is sick, he is sick, medically unifit!’
If I launch into this song at ward-round time, all the systems stop, the pressure within the mechanism of hospital flow slackens, the foot is off the gas and, for a minute, we can thing, try to work-out what is wrong or right with this vulnerable human being in front of me.
Ironically, it is not the medical fitness that usually gets me; I have, and carry with me such a lowly opinion of medicine that to be medically unfit is quite a thing; septicaemia, shock, collapse – hypoxaemia, whatever, there are clear parameters we must follow; low oxygen, too high temperature and oxygen saturations.
Too high, too low or out of kilter and the system takes-over.
Within this constellation of flaws and systematic hiccups there is the person who is now better, or, who was never really at any point unwell – the old man who has fallen and is confused in the context of 21st Century A&E on a Saturday night; diagnosis UTI; off you go.
Whether or not the flawed calculations of inexperienced doctors contributes greatly to the outcome is unclear; its relationship to the process is equally as opaque.
I am fit, let me go, I’ll dance around here if not…
Leonard Bernstein was I am sure not thinking about 21st Century NHS hospitals when he wrote the lyrics. He didn’t and couldn’t have foreseen the calamities where modern medicine collides with the ways things were.
Lenny smoked cigarettes and played the piano. He understood every instrument in his orchestra, down to the last cymbal.
Artistically fit… no longer in need to help with art; medically fit – able to go it alone, or, at least until your GP opens on Monday morning, then, the problem, the package of complaints and frustrations is passed to another.
Can we ever truly be fit, or free?
Goddam – I am medically fit, when can I get home?
This used to always be the consultant or registrar checking you out after your experience; checking you out to the extent that you’ve done something wrong, that the moment is ripe for discharge, moving-on, back home, to sleep on the settee and dring your parents schnapps.
But, but… My 90 year old mum, with her dementia and diabetes, falls and incontinence, arthritis and uncertainly, how, is she fit?
How has she bypassed the narrative which spins-out or place?
Throw off your shackles, whether Zimmer frame, incontinence pads or thickened fluids, let’s pretend that everything is OK, let’s imagine that you are well, in the true and meaningful World Health Organisation perspective; these, as we know are however moments and decisions that can affect the entire outcome of the peace.
Pax Romana; here we go.
86. Memory 3
There are different forms of recollection – the first and most fundamental, is, ‘I remember,’ when we take images of the past and hold them in our mind’s eye. Ghosts, they dance before us, transient, temporary, some more vivid than others;
The second recollection is when an old photo or film is shown; when you see yourself age eight, smiling – this is more concrete; you might see past times on the TV – the Falkland’s War, Tiananmen Square, 1994 in South Africa.
You can’t argue with what you see; the interpretation might be different – I see the man standing in front of the tank from one perspective; the official Chinese Government is likely different; what did the man see? What did they think?
Then, there are the memories that others have about you; these are the spirits that inhabit a nether-world of collective consciousness.
My grandfather running his fingers over my head-stubble; standing in the cockpit of the 1985 El Al plane and chatting with the purser; looking-up and seeing my two-year-old son approach me as I lie on the resus trolley.
There is my memory of the events and the memory or not, of the other; when that other person has gone, died, the memory exists only with me, can never fully be ratified; when another is involved, their perspective can influence the interpretation.
I remember you, you remember me. We see each other differently, yet the moment is the same.
Picasso painting the Three Dancers saw that the world is more than we see, it is what is in front and behind, it is what is before and after, all the dimensions including time are brought to bear, to convey the meaning.
So, what is real?
When can I rely on my memory?
Should we accept that we can never be certain about the past because of the effects of time, of impression, influence and interpretation. Or, should we go with what we believe to be true.
I heard the other day about a digital concept of perception… Imagine in the future, we are able, somehow to integrate cameras into our eyes, so that everything we see, all that we look-at is captured digitally in a cloud repository; add to that audio, and you have a film of your life experience; sure, it will be a while until technology is able to overlay thoughts or feelings, but, likely one day.
And then, if you want, you can return to that event last year and re-play it in real time; perhaps walking down the sunny street aired during the winter blues, swimming with dolphins when you are worried about the outcome of a test. Plug this in to VR and away you go.
Many people say that this is fanciful and unlikely to ever be possible; let’s wait and see.
How I would love to feel or perceive once more the fingers running over my head, or squeezing into the armchair with my mum when I was four, or, or.
It is funny when I see people, particularly at this time, so very certain in their analyses. When the politicisation of everything is everywhere, where people try to manipulate perspectives and force upon others their beliefs.
How tangled and murky it all becomes. Fake news, fake communique, you said that I said you said and, so on.
For the literalists, I have little to offer. The relativists, however, let’s keep going.
All there is is the moment.
Plan ahead by all means,
leaf through photos,
Pain in the present,
Worry is corrosive but, usually about future or past events –
did I, will I, should, could I?
You die in the moment
and are born into the moment;
Sun shines and warms your body
I am puzzled by the question you have posed me
and I continue
To think about the solution
for days to come.
the day after
My heart beats now.
My pulse rises and falls
My breath quickens now.
Will you, won’t you, come this way or another;
Spontaneous in the moment.
In the moment,
Yet the echoes
In your sleep you are alone; cut-off from the world –
Dreams connect you to others,
You are yourself,
By the shore.
Moshe was our sandy-haired head-teacher.
I thought he was wonderful.
Freckled with a wry smile
A friendly punch
to the shoulder of us boys who passed too close.
I remember the day after the storm
when the school flooded
and the water was more than a meter deep.
I am talking, a muddy soup, swirling with wood and dirt and bracken.
in the playground, the next day
This was no Photoshop moment.
This was him doing,
I later learned of the embezzlement
thirty years later
I still cannot work-out what happened.
And reconciling one image with another,
It is the man
blue, crocheted Kippa balanced precariously on his freckled head
that remains with me.
89. My old headmaster Moshe
Moshe Ganz, sweeping the leaves,
ankle-high in flood-water,
Kippah hanging from thinning hair.
On Fridays and other occasions
he would get-out his accordion
I remember his expression – ‘yofi’
punch on the shoulder.
components of leadership,
brought back to me this evening
I have an aquarium of what I perceive to be fairly contented fish.
There are danios, neon tetras, platys, glass catfish and three angel fish. Oh, and two shrimp who scuttle around the bottom, their arms sifting through silt and debris.
At feeding-time, which is usually in the morning and then in the evening, I approach them and, as they see movement outside, they swim to the top. Their level of activity increases, they know something is coming.
They aren’t daft.
A sprinkle of organic flakes and they go crazy; flipping, splashing, swiping morsels out of one another’s mouth.
Then, a few minutes later, all calm.
What I wonder, is, what do they make of me?
It is hard not to conceive that they engage in discussion, behind the plants, like a scene from Finding Nemo.
Each one has different personalities that are the product of their genetic inheritance as much as their shape and size;
Catfish transparent and philosophical, tetras zany and fun; angels holier than thou.
Am I the great God from Mount Wannahockaloogie? Or a blur, a hazy presence who bestows daily Manna from above?
It is hard to get inside the mind of a two-centimetre tropical fish. Their life experiences so different to mine. They perceptions altered by the watery environment and fish-eye eyes.
The reason I hit on this, actually relates to their environment.
‘It’s like describing water to a fish.’
That, and I promise to stop going-on about this, was my experience of the world of care quality improvement and innovation.
Offering care or treatment without the potential to do better, differently, with less waste the next time is so core to my approach that they are indistinguishable.
I may diagnose you with x or treat you with y, but, without the intangible improvement, the next step, the looking ahead to what might be and how we might support growth, it all seems a little futile. Like something a computer could do.
We have evolved over the millennia in order to evolve. It doesn’t stop. If you stop, you’re like another aquatic analogy – a shark that isn’t moving forwards.
QI is the air that I breathe.
It is a manifestation of all that it is to be a doctor or nurse or clinician.
It is the interaction, the therapeutic fix.
My fish, what do they know, beyond bubbles and algae?
Me, what do I know, beyond reimagining the moment?
91. Never expected it to be this hard.
I knew it wouldn’t be easy. Taking a decision, changing path – trying to stand-up in front of… well – what is it? Tyranny?
Over the past few weeks I have repeatedly dreamed of the dinosaur, Tyrannosaurus Rex – it means something like king lizard tyrant; that probably sums-up my situation well.
Stuck in a pond in which I have to play dead, or frozen in motion or else my head is chopped-off. Or, more accurately, I sit here, headless having challenged the Gorgon and lost.
I discovered last week that the strategy used to disempower me – to halt my progress, promotion, development and growth has been used on others. It is quite cunning. It involves taking advantage of the system and using it to your advantage – a little like surfing a wave.
In my experience, it was forcing your way on to an interview panel, bullying any dissenting voices and getting your way. Shouting, striking your chest, roaring, whatever it takes and there you go. A little like the folk who are building the South American highway, blasting the Amazon to pieces, one endangered species at a time. The means don’t matter – it is the outcome; Mammon.
Another image that has been spinning around inside my head has been that of daggers. (Irony of the latter-day Caduceus)
Imagine Gulliver lying on the sand with a thousand Lilliputians marching over his belly; stabbing needle-like swords into his eyes, nose and mouth. Pricking, twisting, causing multiple droplets of blood that add-up to a flood.
Imagine not being able to breathe; suffocating inside a system that is ruled by… a lizard tyrant… What do you do?
Head-on collision seems to result in death, alternative strategies the blood-letting – I had considered another alternative, running away as providing some sort of escape, but no, I have been pursued not by the evil one or his cabal of bedfellows, but by my own team, pulling at my heart.
What is the answer?
Although human sacrifice isn’t something considered within polite society it seems…
Alternatively, if you read enough Kafka you get to imagine that is doesn’t matter if you are wrong or right, if the sword falls, that is your fate.
What would Franz have done?
I have so many historical heroes – imagining their reaction to the situation is overwhelming. Stuck between a rock and a hard place and nowhere to go. Like an engine that has run-dry. Empty of oil and smoking. Smouldering, melting. Disintegrating.
I began this journey with the intention of improving the experience for the many – it seems that the number of variables are greater than I had considered.
Poetic stanza won’t even get me out of this one.
92. Night Frozen
Night frozen on hard ground
Wrong-tog sleeping bag,
of cadaverous bogwood
in the middle of the night
with the rain
and our stuff
inside the tent.
Must have been a grotto
Or some sort of stony quarry
Bobbing around in clear
Get off of my land!
I’m not on your land.
I’m in the water.
93. No more heroes
It seems that society is tired.
Recently, I watched JFK addressing the nation in 1963.
He talked of equality, diversity, community;
He demonstrated the human frailty that would become all too apparent a few months later as he was driven through an open-top car in Dallas.
Today we have smirking demons who scrabble for attention
For radio, TV and satellite moments,
Flourish one-upmanship as a pre-Great War nobleman might have called for pistols at dawn.
There is no shame.
There is a blatant display of eviscerated greed.
Human competition stripped bare,
Emotion seen through a murky lens of fear.
So long as I am breathing
Your situation is of no matter.
A cruel Yorick cartoon,
Made sad, sorrowful and grey.
Amidst tabloid obscenities
Not to do better,
Not to improve the human condition
Or support evolution,
But to secure the moment,
To ensure that tomorrow I can inhabit however briefly a place of top.
The bottom, the middle
And the untouchable,
What is your misery to me?
I do not strengthen my skin by repetitive toughening,
I guard against my weakness
By an immunisation
Against the feelings of others.
Not equality, not equity, but standing on the heads of others.
It was noisy
Outside our little stone house in Crete.
In the evenings,
With the setting sun,
Rami and I would sit in the garden,
Would chat and laugh,
They would shout,
the children trundling about on hard plastic trikes.
Young girls would run in and out of houses,
The cicadas chirruping
owl who was hidden in a tree.
One of the children,
Who must have been only
Two or three,
Would peer through the fence
And watch us in our silence.
Occasionally he would be told to leave us alone,
At other times,
He would just stare
Brown, tousled hair
When I try to write anything about my past –
childhood or later years;
It always comes-out like this.
I cannot seem
to string a sentence together that reaches the end of the line;
at least not consistently.
It is as if
the past is encoded as fragments
as specs of
hiding in the woods in Huntly Park
smelling the damp of Rouken Glen;
dust of road behind school
becomes mixed with scene
where I am sitting with Annie & TV on wall
is telling us
that Diana has died.
There are these discrete entities that do not exist;
we call them
and medium term
they are just
sparks of action potentials
coalesced in my brain.
and I wonder
the head injuries I have experienced
over the years
Have already contributed to the loss of memory
to road-blocks between my synapses.
‘Men at work’
says the pathway
that takes me to the first days of school
for I know it happened,
it is in a void.
The first years are quite patchy
with the exception
of the odd
faded red and navy blue
plaster over my knee
from the fall
that became infected
I can remember
tending the wound,
not making too big a thing of it.
to my ancestors
huddled in Shtetl,
who got by without polaroid aides to memory
to my children
who have moment by moment
on my phone
hanging in the cloud;
how will this affect their view of the past,
96. Not many years left
I had another interesting discussion with a colleague today.
She had heard about my plans to move hospitals and she wished me good luck.
‘I thought about leaving, but as I only have a few years left I am going to stick it out. I understand you have much longer… Go for it.’
This wasn’t a ringing endorsement of the organisation. Yet, it seems to be something I hear mentioned often – counting-down the days to retirement…
My brother, who is not yet 60 is scheduled to retire from his job as a GP within the next couple of years, many nurses can still leave the profession at 55 albeit with a reduced pension.
What does this say about the state of the workplace? What does this say about the future of our society and our system?
My starting point is the conception of ‘work’, which tends to be defined simply as an activity involving mental or physical effort done in order to achieve a result. I suspect most people would like to attach ‘and which you get paid for’ at the end, or else, what do you have… Slavery?
If anyone has caught my One-Page Profile doing the rounds of social media recently, in relation to Wellbeing Teams, you might have noticed that it says, I ‘don’t see work as work,’ this means that when I am at work – at least, when I am doing the work I love (doctoring & innovating), I am in a state of flow* – time doesn’t matter – the effort is taken away and I am usually having fun (as are those around me).
How sad to be in a situation where instead of flow you encounter plodding, a countdown towards the end of the shift, day or career. I know that many find themselves in situations where they dislike their work, where the idea of being in the moment and recognising the overlap between your job and meaning in life is not a thing.
I have a long list of reasons for my change of situation and close to the top is the essence of first, person-centred care, and, alongside that, the way you achieve this level of clinical or therapeutic care – through working in person-centred teams inside person-centred organisations.
If I am to spend the next twenty years in a role (and it will likely be longer unless I develop a life or function-limiting illness), surely it should allow me to be me, and not just me, but all those around me. Colleagues should be recognised as people, cared-for, supported, accepted for all their foibles, worries and anxieties.
We are people with likes and dislikes, with strengths and weaknesses and the results of our labour can be phenomenal if we are supported and allowed to flourish – if the same person-centred, holistic care that is provided to patients is also central to the organisational processes you have magic.
Every year there is an NHS staff survey which asks questions to determine how happy staff are, how contented, how safe to both speak-up for patient care as for themselves – the result vary across the county.
Decades of evidence suggest that the safest organisations are those in which staff feel valued and happy, able to work in teams that provide them with the tools to do the job as well as the emotional and psychological supports when things are tough.
‘Three years to my retirement and I am counting,’ doesn’t fit within this schema.
We are not talking Utopia or Candide – everyone has good and bad days, our experiences and opinions change with time and season, yet, when you have a moment to step-back and evaluate, you should at least see an upward trend – flat-line or a fall aren’t the conditions for fun and growth.
The NHS is limping through the second decade of this millennium. The Tories are smothering one of the greatest systems in human history, and yes, that will make times tough, it will even encourage bad behaviour – bullying and pressurising. It is however a truism – evidence based, if you like, that those organisations or departments that live and die by the sword of care (and love) are the most able to innovate their way out of the choke-hold of austerity, cost improvement programmes and cut-backs.
Presenteeism is the scourge of doing better, of caring more, of effectiveness and diligence. It is usually a failure of leadership.
Come now. If you are lucky enough to have a role in whatever organisation where you are well paid or in a position of authority, don’t just mark-off the days until you can move to Australia or the Costa del Sol, stand-up for those around you who aren’t so fortunate. Take a stance! Down your tools and accept nothing less for yourself and your colleagues to be treated with respect, dignity and care, encouraged to fulfil their potential, acknowledging who they are and what they want to be.
*Flow – Mihaly Csikszentmihalyi who has one of the best surnames in the world has also written a book about this experience, which is funnily enough, called ‘Flow’.
Listen to your parents for you don’t know when they will no longer be able to guide or advise you. Call them. Pick up and don’t call-screen, for there will inevitably come a day when they are not available, when you cannot hold their hand, feel the texture of their skin or the glint of light in their eye. The shape of their glasses; Their divots and wrinkles. Pay attention to what they say as it is more than likely that you will be saying the same things in a decade or so, your ticks, mannerisms, odd behaviours, hang-ups and quirks will travel down and do their thing to you; remember their clothes, how they eat, their likes and dislikes, what they look like when they sleep, when they wake; how do they drink their tea. Their smell. The cut of their hair, the worn leather on the inside of their shoes; the holes in their socks or ladders in tights. Their voice. Handwriting. Their belief in God or the afterlife. Listen to who they are and ask about their origins, when they were young what were their interests? What were their hopes and aspirations? Don’t wait too long or it will be too late and you can’t turn back time, you can’t rewind life. Hear the laughter of their friends or the conversations with their brothers and sisters, hang-on to the intonation, the sighs and laughter, their tears, grasp their gait, their way of walking, sitting, standing; hear them. Listen to their voice, their cough or sneeze. Syllables; idiosyncrasies. Remember their anger and their rage, as likely or not there will be a moment when you are tested and similar behaviours spill-over; seep out of your carefully controlled self. What excites or disappoints? What confuses? What aspects of life have they worked-out or wish they had understood better when they were your age or older? What are their wishes for the future. What do they hope for you? Have you met or exceeded their expectations? Ask about their childhood; when they were little, what were their favourite foods or toys or games? How did they fill the winter evenings? Radio, TV or cinema? Boyfriend or girlfriend, disappointment and hopes; regret. What was their magic number? Favourite book or song? What did they fear? What did they hate, love, desire? And what do they remember about their parents? What fragments of the past have they been able to convey to you – what more is there to learn about your past in order to guide your future. Don’t always look to tomorrow – the moment that is now when you can reach-out and touch is sometimes the best of times and more valuable than a thousand saved-up tomorrows. And just like your mum and dad, your brother or sister; get to know them before it is too late, before they have moved away or you have grown apart, as they are also fragments of you – of your past, present and future; we inherit 50-50, loving them is loving yourself, hiding from them is like hiding from your mum or dad which is cowering from who you are. Black and white, there is a transparency to ourselves that can only be understood in hindsight, when, it is often too late to capture the importance of the moment. Now, now, now. Go on.
98. On the basis
On the basis of not being able to write a full sentence
people I saw on the streets of Glasgow this week;
It is probably
for me to reflect my thoughts
Drowsy men and women,
some with swollen livers
sedated by opiate cocktails
and ground-down benzos.
Some asking for change,
just sitting there.
Some with placards
explaining their situation;
Others with just
the tattered cups.
And the irony of £2.80 for cup of coffee which we accept as being OK
and folk on the street
Likely kicked-out of accommodation
for failure to pay
or comply with requirements
of whatever pathway the social services have dreamed-up
to keep the statistics at bay.
A mixing-pot of mental and physical health
A concoction of misery,
and thickened skin.
Some with Irn Bru to hand
that is something for them to identify
the homeless of Glasgow
seem to be better tolerated
than those of other places;
I see well-meaning folk,
Stopping to chat
The overpriced coffee is not obscene,
we distance ourselves from these people
who are merely
in our society.
99. One thing new
I attended the BMJ/IHI conference in London this week.
It was an intense 48 hours of presentations, posters and chaotic queuing for coffee.
Leaving the event last night and now sitting to reflect on one new thing I learned what jumps-out is not the Rannulph Fiennes, Robert Winston or Don Berwick talks – which in themselves were great, but the little story I took off Twitter on the way home:
This was shared by Brian Dolan. I have written about him before in the blogs, in relation to his patient safety, quality and improvement work.
I love the simplicity of the concept described in the tale.
One person at a time. Everyone matters. This is person-centred care translated through a seaside allegory. I love it.
It makes me reflect on the work I do – which at times can be frustrating, even, to the point of perceived futility.
Moving patients around the health and social care system, sending them down what turn-out to be blind alleys is frustrating. Rehabilitation, intermediate care, home from hospital, outpatient, A&E, OPD, ITU – all deteriorating sentiments of an overloaded system.
What is important and where we must return is the individual starfish.
The you and me encounter that is between doctor and patient, colleagues, innovators and laggards – one at a time, one on one.
Ignore the blur of transformation.
There might be a way,
That you could use to make them all stop?
Yes, I suppose,
But who would want to do that?
There are all types of people out there who operate,
have values different to ours,
who might think it
a useful way to get noticed.
I can’t believe.
You mean you’ve never considered?
I infer from your response that you haven’t considered security
robustness of access,
algorithms and so on.
Why would I?
Is there a password?
Well, we use a code, as you have to have something…
Nothing better, more original?
No; I don’t want to know the answer, there have to be more numbers – perhaps a star, semi-colon or underscore?
(for help with passwords, see here).
Pacemakers are increasingly sophisticated computers that monitor the rate, rhythm and sometimes contraction of the heart. Little skinny boxes under the skin connected by wires to the insides of the heart. Each one lasts ten years or so.
Either through disease, disuse or inheritance, the electrical pathways in the heart can become disrupted, the contraction of the atria not always followed by the ventricles, the flow of blood disturbed, the pump erratic. Some abnormalities can cause palpitations, others dizziness, some, can result in a stop. The beats end.
Pacemakers have revolutionised the lives of people in our society – there is even a movement that reconditions pacemakers and takes them across to the developing world for second-hand use.
With the increasing sophistication of all electronic devices, the internet of things and so on, the devices linkage to the net it inevitable.
Imagine a bored teenager with your heart in their hands…
For recent Guardian article see here.
Painful to see the happiness and I am not there,
to celebrate the success
when I am at a distance.
I know what is happening.
I can see,
I have heard.
In my heart, I can feel the juddering
In my body, I feel the emptiness.
Was once part,
If you stare
For long enough,
After a while, you start
to see all sorts of shapes;
a few hours
At the sand,
Anything can appear.
Perhaps it is the sun
And the heat
Talking to you;
Past the solstice,
Making way for the
Picture the scene.
You are walking through a field, perhaps an overgrown patch of land that hasn’t been tended for years and, in your hand are a few dozen seeds. Mixed variety, some flowers, others fruit, grass, vegetable plants, it doesn’t really matter the type. And, as you walk, you scatter the seeds, randomly. Some will land on rocks, others in places where grass or weeds are already established. You walk on, not following any particular pattern, meandering you might say. The wind picks-up some and carries them further, a few might even land on the next-door field or a garden down the road. You don’t know what will happen, you have no way of divining the outcome of your actions other than to wait. Time will tell. If you return too soon, everything will look the same, unchanged. You won’t know if birds or mice have carried them off – the ones you had hoped would most likely succeed in establishing themselves, for, isn’t it likely – if you had your eye on a particular seed, maybe one that looked particularly healthy, a passing sparrow might have had the same idea. If you return in a week or two, you might see the occasional green shoot. You have no way of telling whether the sapling had anything to do with you, as, it might have already started growing before your arrival; it is hard to distinguish between one tiny pair of green leaves and the next. In the meantime, you have work to do; the scattering was likely only part of your overall duties – perhaps a one-off, perhaps this is you forever, walking through fields scattering. Alternatively, you might be called to do something different – drive a car, listen to music, hold a hand. The possibilities are endless. In part, this uncertainty is likely to distance you further from the original scattering, you will likely be distracted or too preoccupied by other business to keep check on any plants that have managed to gain enough moisture, sunlight and space, who haven’t been eaten, carried-off or failed to germinate. Time passes.
The field you first met many months before has changed, as have the seasons. When you first stepped-out it was winter, then spring, and now, the beginnings of summer; the days are longer, warmer, you feel a little more optimistic about life in general; perhaps the pressure for survival has abated. You start to breathe more easily. The weight of winter and frozen months has lifted.
And you remember the field.
At first you were not even sure where it was that you walked on that day. You can’t quite remember, so, you set-out to find that first place.
You can’t find it.
All around you are fields and gardens, trees and plants that seem different; the environment has changed, you have changed.
You don’t remember the nettles or other stinging plants, you see flowers interspersed with weeds of suffocation; you don’t see much fruit.
Some of the plants are healthy, growing into the light, displaying flowers, some with beautiful scent; others are twisted. Malformed. Not seeming to serve a purpose.
It is impossible to tell which are the result of your actions, which the children of your seed and which were already established before your arrival.
It is not an idyllic scene; it is obscure, unclear, unsentimental.
You cannot establish your place in the geography, and no one else is around to tell you, to explain where to go.
You feel very tired and decide to rest.
As it is warm, and the ground dry, you look for a patch of grass, somewhere free from thorns and stinging plants.
Across the way.
You bend to your knees and lie on your back. The sun is shining. The sky blue with only an occasional cloud.
You think of your field. You have no idea whether you are lying in your field or that of another, the seeds you scattered may have all failed to grow, others might have become flowers, others twisted, broken, most will likely have been eaten or died.
You consider your place in the world, in this field, and you feel your smallness.
You realise you are a seed. Planted without intention, scattered without schedule or security.
No one is around to monitor your growth or actions, or to return and check on you as time passes.
And, we are all seeds scattered by the wind, trampled underfoot or lifted by the sun.
And that is the lot of humanity, the passage of time, random decisions and optimism.
104. Pillars of the Earth
This book was a gift
Given to me
who cared & saw through the tangles of organisational politics.
For, the book
is about monks vying with abbots who are battling with bishops
in a hierarchical mess
All taking place almost
All sharing the same goal –
praising The Lord;
somehow blind to the concept that
sees all things & that cheating on earth is equivalent
to falling short at the gates of heaven.
And if you mirror this
and you replace
worship or prayer
And the Holy One Blessed Be He with
You might see where I am coming-from.
Only, there is no divine retribution
the winners and losers;
are those who
And those who do not.
And those who do not.
The line between recovery and deterioration
Is so very dependent
Who are not as expendable as
labourers, craftsmen or artisans.
the making of a doctor or nurse
is not taught;
It begins at birth
And is nurtured,
University or college
the finishing touches.
And, if we are born to the priesthood,
taking the path
going, against the flow,
that should be enough to sustain us.
If you are placed here to care, to treat to share,
To love, to nurture, to heal,
You really have no choice.
Spiralling you tumble.
I just read Planet of the Apes
By Pierre Boulle,
Written in 1963 originally as La Planete des Singes
And released in ‘73 as the movie with Charlton Heston
(Now deceased, gun lobbyist).
I had read it many years ago
And returned to the novel
After my recent confusion over the War for the Planet of the Apes
Which I found
The novel twists reality,
Manipulating past, future and present,
Into a hectic
The movie I found merely odd
Nodded-off in the middle,
Which is never a good sign.
106. Positive Psychology
It’s interesting why we, that is, humans, so readily shift to punishment and negative psychology rather than the opposite – the pendulum swings so much more readily towards stick than carrot.
Yet, we know, from countless experiments that the only way to engender lasting effective change either in ourselves or another is through positive psychology – bigging-up the good and downplaying the bad.
There must be something very deep within our evolutionary heritage that sends us to punish rather than reward –
Much of this stems from our pre-verbal and infant existence, when, lacking capacity for language, actions dominate. Baby – hot – shout; infant – road – car – exclamation; dog – bite – hit.
Sure, there is a time and a place for softly, softly and also situations where we have to jump-in. You can’t talk an assailant. By the time they are on the rampage, it is too late. But, how about we look at the preceding period, before the radicalisation;
It is perhaps too great a step to say the criminal attacks because of lack of love; because the stick was all they knew – if talking doesn’t work, let me proceed down this alternative route.
This debate is likely to swing to and fro through left and right political ideological tete-a-tete; indefinitely.
Putting aside these extremes – child and hot iron; shark in water, most of our existence is not in these situations.
Evolution will have influenced our path – it will have shaped the momentary sparkles of neurochemicals that lead to action, but we, that is homo sapiens, thinking man, have moved beyond reflex.
Despite this, I see as a daily occurrence, coercion, reprimand and telling-off; smack winning over praise, threat beating encouragement.
Most of our organisations are still dominated by a top-down don’t cross the line philosophy; in hospitals, weaponised incident reports – ‘he said, she said, they did’; the learning from events, the stepping back and analysing, always seems to be a secondary consideration. Our RAG rated systems show who needs improvement – and the traditional approach for doing better, of a word with the headmaster is ineffective.
The headmaster visit does change behaviour – it might result in a short-term pulling-up of the socks; in terms of sustained or meaningful change, deep, cultural relearning, it is a flop. Yet, it is the go to.
Understand, get behind, inside the action and then perhaps you have a chance of influencing.
Beyond flattery, we need to capitalise on our strengths;
107. Post-traumatic bullying disorder
It is interesting. If you go back to the Great War and look at the men who returned from the front to be shot for cowardice, or later diagnosed with shell-shock and what we know today as Post-Traumatic Stress Disorder, how society views health and disease, physical and psychological wellbeing, evolves over time.
It is estimated that up to 20% of Gulf War veterans experience PTSD. This number is significantly higher for those on the front-line, although, even those who never left the base, experienced significant trauma from air-raids, their friends and colleagues dying.
Imagine the numbers of people today, the result of global conflicts, who witness horrible things and the effect this will have upon them.
I am not an expert in this area, yet, it strikes me that there are different forms of this condition – the first, where something terrible happens, a person is stunned and that event lives with them in their conscious, disturbing sleep, leading to depression, anxiety and so on, and, another group, who experience the trauma but keep going. Those who despite the horror, somehow manage to sublimate the thoughts and feelings, bury them.
For some, this burying might be effective. Essentially digging such a dark, deep pit and covering it with so much happening that it never surfaces, for others, the events can return unexpectedly at a later time.
The point of this blog relates to the puzzle of this latter group. If you cut your finger and experience pain, it is clear that the cut has caused the pain. If you knock your arm and ten years later because of insidious neurological or sensory damage you experience pain, the cause is less obvious.
The same surely applies here.
For all the women and children, fathers and grandfathers who experience trauma – crossing the Med, escaping from Tikrit, fleeing ISIS, attending a pop concert, it doesn’t matter where, there will be those who experience the pain, seek help and receive support.
For others, the pain will only surface later and then what do you do – what happens when the gap is 10, 20, 30 years or more? ‘What do you mean, you haven’t got over the Gulf War? That was twenty years ago! Pull yourself together…’ asks the naïve one, the one who is unable to appreciate the depths of human suffering.
And the same for other forms of trauma – bullying for example.
If I experience bullying and I am in a fortunate enough position to report this and have the situation corrected (something that we in the 21st Century fool ourselves into believing happens far more than it does), the bully gets their comeuppance, you move-on and with support rebuild your life.
What if there is a delay between the bullying and the symptoms. What if 10 years passes, during which your conscious or sublimated mind manages to maintain a status quo, then… Bang. You are reliving the trauma, the pain, the harassment.
Where do you go from here? Look at the news today – for all the historical cases of sexual abuse coming to the fore in relation to Mr Weinstein, there will be 1000 times that number hidden, people who have moved-on with their lives, burying the past.
Well, it is to acknowledge that what is agony for one person might be inconvenience for another – as Victor Frankl says. Trauma is subjective, as is the way we each live those experiences.
Then, to create an environment where those who are bullied or traumatised don’t need to bury the feeling, who can express what is inside, and, those who witness or experience bad things can share. Away from the bleakness of wars and refugees, how many people working in hospitals experience psychological trauma? How many are able to adequately unburden? Within mental health organisations this is standard practice – it is called supervision, this doesn’t exist within most general hospitals. People are left to get on with it.
A culture of safety is one in which people can express their feelings. In which they can say when they aren’t coping or when they are struggling or when the ghosts of the past have come back. No one knows when this might happen and we are all at risk.
Listen, provide people a chance to express the inner thoughts and do not judge.
108. Quiet (photo of my dad, for Paula)
Photo of my dad,
black & white,
In Nissen Hut
During his National Service in the 50’s.
Looking straight to the camera,
Unusual for him who always seemed off-centre,
on the periphery;
From the light
I assume it was evening,
Although, inside those places,
there was likely never was much illumination.
Two stripes on his shoulder,
I don’t know the meaning*,
nor the significance,
nor the year.
Pen in hand,
he was always an adroit, meticulous writer.
And, piles of papers to his left and right
and in front;
I can’t imagine their subject matter,
for the stories he related were few.
The only two,
I heard more than once
Was his experience of jumping out of a plane at 15,000 feet (fear)
and the other,
Taking a fellow soldier
From the barracks, who for whatever misdemeanour was in handcuffs,
to the synagogue for New Year prayers. (Dad un-cuffed him)
Given there is only a fortnight to go until
Then, Yom Kippur.
Ransacking my past,
Picking out moments
that are fizzing
in the nooks
Sitting with Andy in Queen’s Park.
Outside the Glass Houses.
just filling my mouth with
and teaching me
Supress the cough.
That was me at 17
And that was me for the next seven years.
Tie-up your confused, vulnerable, fallers.
That is a quick and easy way to save yourself trouble.
It’s unethical, but it gets results.
Target achievement is a fundamental at the heart of this.
In a complex adaptive system, there is often less scrutiny of the journey than the outcome. We broadcast our successes – quick wins and triumphs. We bury (literally at times) our failures.
On a trip to Holland last year, I was met with scepticism when I explained to the hospital staff our policy of not restraining confused older people. I suspect they either thought I was lying, or perhaps joking. I mean, how else, can you keep those old folk safe?
In the UK, we believe that restraint is bad. Tying someone to their chair or bed might be effective, it might prevent wandering, it might even result in fewer patients falling, but it leads to a greater harm – damage to an individual’s sense of self and likely, the spirit of those caring for them.
We tie-up horses and donkeys, I use a lead when walking my dog. We shackle slaves.
A subtler form of restraint can sometimes be found in our hospitals; head down (in bed), or table blocking. Yes, this is restraint. If you look for them, there are even some ‘bucket’ chairs out there, a form of mechanical straightjacket that disrupts an individual’s volition.
I suspect certain world leaders wouldn’t have a problem with restraint (so long as it doesn’t affect them or their family) – yet, we have surely evolved past this interpretation of humanity.
Care can be easily abused.
I care for you, you care for me, we care for you as a person.
Care and love are what make us human.
If we disregard or disrespect care, if we fall back into mechanistic patterns of behaviour, we become worse than robots, we become free-will fascists.
Let’s sit and listen to what our patients’ are saying. Let’s try to understand their needs – their hunger or thirst, their tiredness or pain; let us not objectify their experience – let us weigh their feelings, emotions and perceptions.
If I step barefoot on a pin, that is my pain, it is the same pain that has echoed throughout our evolution. More is expected of us in the 21st Century.
Today, when you suffer, I feel pain. I can’t shut out your experience.
We exist as a community, if not we perish as individuals.
111. Ronen El-Kabir
Ronen wasn’t so great.
he laid me flat on the ground,
split my frenulum
and I learned a lesson
not to have a
with a lad
the honour of my friends is at stake,
there are rude words
Keep your head down
if you want to keep
your head attached
112. Safe, comical moment.
This is how you do it…
Think of something absurd;
The most unlikely combination –
The most abstruse;
Whether too tiny to perceive or beyond our imaginings.
Iridescent; phosphorescent –
Pixels falling down the screen
or reassurance by other means
Human mixing with the mechanical,
translated into action.
Imagine the impossible,
Turned inside out
washed at high temperature;
Stepping backwards into ancient times;
Like the scene at the end of Stig of the Dump.
When faint light
Settles over the downs
And figures dance.
113. Schlaf / Shlof
For the past thirty years or so I have been living in guilt. Perhaps, shame or self-reproach are better words, all to do with my weekend nap.
I love a nap.
Indeed, any opportunity I can get, I nap.
In the past I have even napped at work – something that were I not a doctor, I would likely receive severe reprimand (I can remember walking-in on a night-shift nurse having a nap many years ago… that’s not something that happens much these days). (And, why shouldn’t it?).
So, yes, the nap.
For decades, the nap, or as he would term-it, Shlof, which is Yiddish from the German Schlaf for sleep was an integral part of my dad’s weekend. An hour or two in bed on Saturday afternoon, and, Bazinga he was back in action.
I seemed to have inherited this behaviour, which in and of itself is not necessarily bad, but when you see everyone else going out and about, busying themselves with shopping, gardening, walking, chores and so on, you feel that you shouldn’t be sleeping, you should be out there doing.
I worked-out the answer this morning while driving my son and his friend home from a rugby match. Stan, Rami’s friend is an early-bird, like me. He said that he usually wakes-up at six in the mornings, weekends or weekdays and has a couple of hours down-time before the rest of the household get going. He struggles to stay-up at night. Also, like me. My son is the opposite, he struggles to haul his tired body out of bed in the mornings.
It was then, thinking and calculating that I on average wake-up an hour earlier than everyone else in my household – dog walking and early getting-in to work are two of the main activities I use to fill the time. Yet, when you add this up, one hour a day, is five a week and over the course of the year, something in the region of 200 hours a year. I miss almost eight days of sleep a year compared to a normal person.
And, perhaps when you consider Early-Morning Waking, a cardinal symptom of depression and anxiety, you realise why in addition to all its other woes, depression makes you feel knackered.
And here is where my Shlof comes-into its own.
We all have different patterns of sleep.
In a recent study, examining the sleeping patterns of tribal people it was found that through the night there is always someone who is awake. Equally, there are always people who are genetically predisposed to stay-up late and those like me who are early-birds.
It is evolution.
We are there in the morning to tip off clansmen to the approaching Neanderthals, my buddies are up late, to watch for evening raids and, the sabre-tooth tiger will be interrupted by the on and off sleepers in the middle of the night. (This is in part a reason for dogs evolving alongside humans – to act as early warning systems).
And there it is.
It is my DNA.
I may nap, I may Shlof, but overall, I probably do some good from my much-needed earliness and overall, I may look like a lazy-bum, but my hours of sleep are the same or even possibly less than yours as you sit up late watching re-runs of Life on Mars.
A gute nakht.
114. School and hospital
I am afraid I can’t give you an historical overview of schools and hospitals, let’s just say they are both social constructs that tend to reflect on a certain point in human development – the will to educate our children and the desire to support us when we are ill. It would be hard to conceive of a modern society without these being at the core.
Again, that is not where I am going.
It is more the reflection that if you look to the 21st Century model of these institutions, and perhaps compare them, there are some striking similarities. I won’t look at the differences in detail either, as, this isn’t an essay or something I will be graded-on for my GCSE, but, my blog and, I am neither a student nor a patient. (Mostly.)
Here are some broad similarities:
> Both are institutions
> Both are managed/governed (by and large – there are exceptions out there), along the Victorian factory/top-down model.
> They have many rules
> Breaking the rules is considered bad form
> There is a rhythm to each place – register, assembly, lessons – drug rounds, ‘wash’, meals, ward-rounds.
> There is an end to each – you graduate, you get better or you deteriorate.
And so on.
I am not saying schools are hospitals or the opposite.
And, like these aspects in common, there are areas for improvement – We, in UK are experiencing a revolution in patient experience; it started with the notion of ‘nothing about me without me,’ and has evolved into the campaign to #EndPJParalysis – the de-medicalising, de-institutionalising of healthcare. Removing the uniforms, the visiting times, even bending the rules around what patients know and decide.
In this sphere, schools have a way to go. The only choice to sitting exams is leaving school, and, as our government has made clear, if you leave school without a qualification you are on thin ice – a little like the concept of ‘discharge against medical advice’ in hospitals.
We talk of person-centred care and, in many areas this is becoming the norm. Services, hospitals built for patients, with them at the centre; the medico-centric perception is under threat. And, hurrah to that.
I have even heard of child-centred education, which my sister tells me is a thing in Scotland. As to whether it sits at the core of English schools I don’t know – as any parent will tell you, finding-out about the good and bad of curriculum from your children is not easy.
The best example I can think of, is, every summer, my son shows me his pedometer which after playing cricket registers a couple of steps, and that is his exercise. He wonders why. I wonder why. Perhaps it is because I am not English that I can’t see any good in the game. Why not have them running around the pitch 20 times before a match?!
And, with schools, in hospitals there is good and bad. We don’t hear much about abuse of kids in school. The explicit evil dealt to folk in the middle of last century seems to have faded – I imagine there is still some darkness, some covert bullying, whether of teachers or students. I won’t mention the scene in hospitals – some are fantastic – taking advantage of the strength, intelligence, cleverness and creativity of their patients and staff, others, not.
Do you learn in a hospital, do you get better in school? It is probably easier to examine the first question – sure, in some environments, patients learn about their conditions, are able to see, examine and review the behaviours of doctors, nurses and all the other members of the team. If they are astute they can discover not just about their situation, but all the other aspects of treatment and cure of those in their bay – their dietary, bowel, anxiety habits; the magical protection of hospital curtains falling down on sound-proofing.
Do children recover in school? It seems here, as with hospitals, the goal is not really to recover – you do that after discharge, during convalescence or sitting on the settee. Children seem to find school tiring, exhausting and, yes, exciting, although not as thrilling as when I was a boy. But, as with all things, we tend to remember the good and forget the bad.
Was this a reasonable comparison? Was there any value in holding both up to the light? Perhaps, perhaps not.
Let’s just say there is huge potential in relation to both systems of work, learning and treatment; it we take the best from each, the remainder is easy. Sure, there are socioeconomic, geographic and situational differences, but with our inherent ingenuity I am sure we can overcome.
115. Screen-time (1)
I remember when PCs first became popular, sometime in the 80’s or 90’s, having a conversation with my brother about the name – Personal Computer; my argument was that PCs weren’t that personal; certainly whenever I used one it was in the living-room or in the company of family or friends; I don’t remember ever hiding or obscuring the screen from anyone; minimising the ZX81 images – if that was even a function of the machine.
My brother explained that the personal related to his work experiences of one person sitting at work with their own computer doing their own work; perhaps, a little like someone’s personal workbench or sewing machine, their slot on the assembly line. It was then and the work, the computer acting as a personal intermediary.
Indeed, I don’t know when passwords, or then pass-codes became popular; when was it that ‘1111’ was considered an inadequate way of protecting personal information – many people nowadays still keep their private information in hidden or coded books, considering that although these might be found by crooks, they will have limited ability to interpret the handwriting, compared to a machine which can be hacked.
It was probably around the late 80s after the release of the movie War Games which I recall described the ins and outs of hacking into the US National Defence System. I haven’t seen the film in years although I imagine back then the code-words were straightforward, something along the lines of ‘USA’ or ‘MAD’ or some other Cold-Ward mnemonic.
Today we are not only told to create complex passwords, but more frequently compelled (a word that all ways takes me back to ‘The power of Christ compels you!’), when ‘doby’ just won’t do, nor will ‘Doby’ or ‘Doby1’ – you need six letters, upper-case, lower-case, alphanumeric, symbols.
So, you could say that the personal of Personal Computer has evolved – nowadays computers – laptops, iPhones and iPads are all very personal; with personalised screens and layout and passwords.
And with this personalisation has gone a new way I have noticed recently of holding the devices; for a couple of years, in meetings in particular, folk have rested their phones screen-side down, likely to avoid any embarrassing messages or emoticons flashing-up during important moments; In some places phones aren’t allowed or the signals are blocked – another mode of interrupting the personal; but, to passwords.
My kids have passwords to their phones, they all know my password although they keep their as carefully guarded secrets; I sometimes wonder whether I should insist on having access although, I know this is unlikely to be fruitful and also, likely to result in other means of hiding goings-on from my eyes.
The kids can access my PC and laptop and phone and I don’t have any problems with them seeing who I am texting, corresponding with or searching; the PC nature of my digital devices includes my family;
116. Screen-time (2)
Tilt the screen
so as not to allow
to see what is on the screen
if the intrusion
is too great
or the content
and bury the screen in the folds of your hoodie.
I shall not,
I will not,
Slap, slap, slap.
It’s a funny word.
It can just as equally conjure a comic kipper slap or Tango Man, as much as a moment of discomforting supermarket abuse. It carries a flippancy. Not as severe or significant as hit or punch; it is transient. Bam! Anger – action – next…
It was announced today that Scotland plans to ban slapping.
People I imagine will interpret this depending on their political and philosophical leanings – either; ‘Fantastic’ – ‘Why would anyone use violence as a means of communication or control in the 21st Century?’ Or, ‘Bleh, nanny state, thank goodness I live in England!’*
Is there ever a situation when it is OK to hit another person, particularly, someone younger and weaker? Isn’t the size differential enough? Is your vocabulary or emotional formulary inadequate to convey your feelings?
In his book ‘The Slap’ Christos Tsiolkas describes the events following an altercation at a children’s party in Australia. I mean – surely, anyone, if pushed far enough would snap, strike-out, respond to provocation? Isn’t this something inherent? Are some more prone to impulse than others?
‘I’m sorry your honour, I killed him on impulse, my responsibility was diminished.’
Sure, slapping can play a part in a complex game of psychological warfare between parents and children, a relationship of escalation where each are pushed towards the precipice, a game of familial chicken. And we have all seen it happen.
I guess, and I hope, and I believe, knowing the Scottish Government, with our heroine Nicola at the helm, this will not be interpreted simplistically. You can’t just ban slapping and imagine that all will be well – for, there are always more forms of subtle abuse and psychological punishment at the disposal of those with enough time and imagination.
No, what is needed is support.
Support for those families rich and poor, educated or not, who find themselves in situations where the only response to a misbehaving child is, slap.
We need to understand, to help, look at the stressors underpinning the behaviour, prevention rather than cure in the case of poverty, emotional exposition in the case of raw anger
All of this is surely a drift upwards, an evolution of society towards better things, not a nanny protectionism, it is accretion towards something better.
And I celebrate the law!
*Slapping was banned in Sweden in 1979.
119. (0.047) The Speed of Snail
Thank you, Jane, for the insight into why healthcare professionals in the 21st Century are using old-fashioned means of communication to deliver care… Perhaps, it is something more systemic, more general, a holding-on to the past?
If you compare the changes within health that are happening today with 100 years ago, you might get a flavour of the pushback.
In 1917 the October Revolution (which happened in November, but, that is another story) erupted in Russia. The Romanov’s came to an end, Lenin rose to power and centuries-old state structures were dismantled. It must have been a great time for a radical. Likely, uncomfortable if before you were sitting-pretty in a Winter Palace, watching the peasants shovel snow.
Looking this back to 1789 and the French Revolution, you can see why the other great Powers of Europe were worried.
A hundred years ago, the hospital hierarchy was established and comfortable. People knew their place. Doctor/nurse/porter – something like that (managers didn’t exist); top to bottom. Within each division there would have been consultant/registrar/houseman and so on. Everyone knew where they stood and I am sure those at the top enjoyed their position. Patients likely died as a consequence, but, you can’t go against nature. As Nietzsche might have said.
Today, the system is crumbling. The hierarchy is toppling. Ceding power is central to high quality care. When the consultant listens to the insight of the porter or student nurse, you are on to something. When the patient determines the ward-round times or which investigations they prefer, the world is changing. More than a top-down I say, you do, it is, we say, we do, we reflect. The true complexity of the challenges is apparent.
I was involved in an interesting clinical case recently – here it is in outline:
Patient A has experienced funny dos. At times she collapses, sometimes loses consciousness, at others she is vacant for a few minutes. This has been happening for years.
Patient A has heart tracing Y.
Tracing Y (from Google)
Cardiologist sees Y and says A must have a pacemaker. That is why they are ill.
Old system > (this is for non-emergency situations), specialist > tracing Y > pacemaker.
New system > vacant > tracing Y > patient preference/explore what is happening/weigh the risks/calculate the benefits>consider alternative causes or treatments. Think then act rather than the other way around.
I am not sure if that made sense. In essence, the change is a shift from doing to, to doing with. From passive recipient of care to partner.
The consequence – you might decide to go left instead of right. You might consider my opinions irrelevant. You might make a daft decision. (And this within a society that voted for Brexit.)
And if you start to dismantle the fundamental structures of hospital and care, what remains?
You likely encounter situations where 90-year-old Enid refuses to get into the ambulance to take her home from the hospital at three in the morning, James, 80 asks for a second opinion or, Callum 50 who has been self-administering for the past 40 years asks to look after his own insulin.
It is reimagining ward rounds and multidisciplinary meetings, where the patient is central, the main character in their story. Where, the grit in the engine makes something special, is more than an inconvenience.
And, moving at the speed of a snail is inadequate. Care at the speed of a quill is absurd.
Radical has become a dirty word. It has never been more essential.
120. Something medical.
We debated yesterday during the ward round, as to whether I should discontinue one of my patient’s medicines.
85, he’s not in good shape; struggles to walk, confused at night, the stroke ten years ago took his ability to speak.
Of all the drugs that are forced upon him morning and night, one is to lower cholesterol. A statin. I know that one or two of you reading this will be taking a similar drug – they all have the same ending – Simvastatin, Atorvastatin, Pravastatin; they are a variety of drugs discovered twenty or thirty years ago that have magical properties in modulating levels of cholesterol, manipulating the lipids that flow through your body.
It was in my home town of Glasgow that one of the early studies demonstrated the dramatic effect the tablets had on reducing death amongst a group of inactive, overweight Glaswegians. As a result, folk lived who otherwise would have died. Since then, thousands of lives have likely been saved and drug companies have made billions. At one time statins were the most commonly prescribed drug in the world; now I think it is antidepressants (or, in the US, Opiates), but that is another matter.
My patient, I’ll call him Alf – not his real name, can’t talk with me – because of the stroke; his wife is frail, but able. Should we or shouldn’t we stop the drug? Is the burden of the medicine worth the benefit of the treatment? One little tablet surely can’t do much harm, and, remember, he’s had a stroke – he doesn’t want another. We talk with his wife, try to explain the ins and outs – not venturing too much into statistics which for most normal people results in a shutdown of attention.
You see, the drug is to lower cholesterol to prevent him having a heart attack or stroke, and, yes, he is at risk of these following his previous stroke; but, then there is his current situation – his quality of life; his ability to communicate is limited. And then, there are the costs of the medicine – does it cramp his muscles, limiting his walking? Does it raise his blood sugar causing him diabetes? Does it result in a nightly battle with the nurses to convince him to take a drug that he can’t comprehend? And, another stroke what would that do?
Not forgetting that none of these medicines are panaceas. None of them help everyone every time; numbers needed to treat means the numbers of people who must take a tablet for one person to benefit – the numbers range from 20 to 100; that is, for every 100-people taking a pill, 99 won’t gain any benefit – it will be as if they had never taken it in the first place, and this, balanced against numbers needed to harm – how many people will need to take a drug before someone is harmed – falls, vomits, collapses, dies. Difficult to calculate given individual variability and was it drug X that cause him to fall, or the uneven stairs, the poor light or a bad dream?
And then, continuing from the number of people needed to treat is the duration of treatment – if you take drug A for two days it is unlikely to make much difference; if you take it for five or ten years, it might prevent the growth of a tumour or the strengthening of your bones preventing a fracture. The body, its physiology and anatomy change at different rates, different speeds. Bone grows slowly; my stomach ulcer can heal overnight.
We debated this way and that; to stop, suspend or continue. Perhaps over-thinking what another doctor wouldn’t have considered an issue – some would just ignore – gloss over and move on to the next question, others would have crossed-off without a second thought.
And in the end, given the likelihood that no matter my action things will happen – he will walk, improve or deteriorate, with nothing to do with me – we can offer love and attention, affection and care, but we cannot modify time’s arrow.
Just like a Shaman, stomping around my garden at twilight, chanting, shaking a stick at the clouds, frightening young children, these are all forms of the same thing – all modifications of self-belief, of concepts of good and bad.
At least I am trying and we are open to discussion; to listen to others, respect their opinions, ideas and considerations/
Tomorrow is another day.
PS We stopped it.
PPS Please don’t stop taking prescribed medicines without talking to someone in-the-know (doctor/nurse/pharmacist).
121. Speed of light
Yesterday I received a letter from a GP.
How many of you (patients, that is), realise that within our health and care system, on which at times your life, or the life of your family depends, and, despite 21stcentury technology that can take us to Mars and back, doctors are writing each other letters.
Sometimes these correspondences aren’t even word-processed; hand-written, some folk use fountain-pens. Technology that predates Gutenberg.
It isn’t even that straightforward –
When I see a patient in my clinic, I dictate the letter to an electronic system that is then typed by my secretary (a person) (on Word), then printed, and posted (2ndclass – NHS austerity and all that), and delivered (Royal Mail) to the GP practice where the letter is scanned (by hand) onto their computer system before being read by the GP (on their PC).
Amazing, isn’t it?
And, faxes – don’t even get me started!
Why are seemingly intelligent people, working in complex systems, content with this medieval communication? I guess, in many instances, that is just the way it is. It is the way we have created our systems of governance and information security.
A letter is perceived to be more secure than an email, which, anyone with a sophisticated de-encryption programme could access. Yes, Lithuanian hackers are interested in the state of my eczema, varicose veins, or, schizophrenia.
And email – another hazardous conundrum.
What to do when a patient contacts me by Gmail?
The guidebook will advise that I cannot know that Jim_Morrison@outlook.com is from Mr Morrison, and can’t be trusted. I should either ignore the incoming or reply politely with, ‘I know you sound like Jim, heck, your rendition of ‘The End’ is authentic, but, unless you are NHS.net, you could be anybody.’
I sometimes hear similar conversations on the phones at work,
‘Sorry Mrs Brown, I can’t tell you any confidential information about your son,’
‘I just want to know how he slept’
‘Sorry, that is personal information… Do you have the code-word?’
Yes – back to medieval times… knock three times, give the code-word and you will gain access to the walled city. I keep thinking of Münster – check it out if you don’t know the story.
And, there is good reason for all this unsophisticated limitation, we don’t want private information shared; what is private should be between the doctor and the patient, yet, we are prepared as a society to spend ten billion pounds (that was the estimated cost of the failed national programme for IT), and, pretend that falling-to-pieces curtains possess a unique form of sound-proofing that the patient in the next bed cannot perceive.
‘Please breath-in and push down, like you are doing the toilet, Mrs M.’
‘No, not enough, harder… Again!’
‘Oh doctor’ and so on…
It is silly, really.
And, here, I think of Douglas Adams and the Shoe Event Horizon on Frogstar World B that collapsed because it was overwhelmed by shoe shops. Mindless competition and focus. Missing the big picture.
I could write to my colleague, I could try to penetrate their surgery’s phone system – heck, there are even a couple of local GPs whose numbers I have in my contacts, but most not.
I will likely wait four or five days for the (tattered, paper) notes to arrive in my office, read through the admission, dictate, type, print, scan and eventually they will have an answer to the question).
I know there are hospitals that have this sorted (in the UK) (The US and Australia by comparison are working in the light of day). Emails and texts fly backwards and forwards between patients, carers, doctors, nurses, therapists, social workers, psychiatrists and on and on. They use the speed of light to ensure our patients are sorted.
These places and systems are a tiny minority of all the health and social care organisations in our country.
Isn’t it absurd?
That is the NHS.
firstname.lastname@example.org – this is not a secure email; it can probably be hacked by my 93-year-old next door neighbour who doesn’t own a computer. There you go. Let me know what you think.
Yesterday I was talking with a colleague who has a bad knee as she hobbled along one of the hospital corridors. I suggested she use a walking stick. She didn’t think this a great idea and limped off.
I also have a family member with a bad knee. She won’t entertain using a stick either.
Knees can be tricky things, especially when they go wrong.
My mum had a bad knee also. She didn’t seem to have a problem using a walking stick. I bought her a carbon-fibre one which is now in my garden shed. She never wanted to entertain a wheelchair however.
It is odd that different people have varying perceptions of what is OK to use as a support or prop.
It might be OK to hold-on to your friend or partner’s shoulder as you navigate some tricky steps; it might even be considered acceptable to display your pain for all to see. But, a stick. No.
I haven’t seen many walking sticks on the ward recently.
Indeed, the last walking stick I saw came to a bad end when it wasn’t used as a walking stick.
I was talking with medical students last week about ageing and what I do. We discussed falls – an ever-present theme in the life of a Geriatrician. The reality being that as people age, they are more likely to fall-over, at some point, than not. We – that is humans didn’t evolve to be 95 years old with arthritis. Our balance, proprioception and coordination mechanisms haven’t had a chance to adapt to advanced age. And so, falling is a big thing.
I was talking with a patient yesterday who was navigating the ward using a Zimmer Frame (I see far more of these than sticks); she was quite steady and although I wouldn’t go as far as calling her ‘nimble’, she could get where she wanted to go.
Many of my patients who should be using Zimmer’s to support their walking forget to use them.
You need to have the capacity to remember that you are unsteady when you walk, that you might fall and that you need to get hold of a four-legged aluminium prop. If you forget this and you are off and your balance is bad or your knee or hip weak, over you go.
Fall or worse, fracture.
I wrote a before Christmas about Cognitive Dissonance – I think this is an example. People who dissociate the reality of their unsteadiness with the belief that using a walking aid would perhaps reveal an infirmity that they don’t want to accept.
I can sort of get this.
But it is a shame.
We, that is everyone, who struggles through life needs as much help and support as possible.
Independence is fantastic, but you can only achieve independence through the support of others.
We did not gain world domination on our own. We live in societies, within networks of families, friends and colleagues, nation states, unions and organisations. Going it alone isn’t an option.
So, if anyone wants to borrow my mum’s old walking stick, give me a shout.
I am stuck.
I don’t know if this is because I am in a work-limbo; in the transition between the end of a decade working in Doncaster and a shift to Rotherham, or whether there is something deeper, perhaps more sinister going on.
What, if I have run out of ideas?
Many years ago, a friend gave me a copy of Alice in Wonderland – she wrote across the DVD, ‘Six impossible things before breakfast.’
My relationship with that sentiment is a little like the fog of forgetting that writers such as CS Lewis capture in his tales – the change of focus accompanied by growing up, what was once real, live, vivid, becomes a dream… Returning to Narnia.
Sure, I know there were times when, head buzzing, I would conceive of multitudes before mid-day, scribbling in notepad, bouncing ideas, but those were the past, those were before, now, they don’t seem real.
Once there was such a concatenation of circumstances, everything aligning, people who championed me and whom I could support, new adventures, novel concepts, back in the day when saying ‘person-centred’ out-loud in a clinical setting was likely to get you shot, when the evidence-base ruled and all were subservient to the science.
Perhaps the world has changed so much, that radicalism is no longer required – what does a revolutionary do after the overthrow, when things are moving to a new-order, when the trains are running on time and the rich no longer take everything? Do you keep fighting, fighting for what?
Do you become redundant, forgotten and washed-up? No longer necessary to the Zeitgeist?
The Native Americans talk about war and peacetime leaders – individuals with very different characters, personalities which are required at different phases of a society’s evolution, perhaps my lack of inspiration is because I have evolved myself out of a job? The person-centred, holistic, multidisciplinary behemoth has started to gain traction and there is nothing for me to do but stand aside and watch; those driving the bus are only indirectly dependent on the engineers who designed it.
Alternatively, this is just a temporary hiatus. After all, most of us live long these days, and a decade is not what it used to be. Time speeding up, and living longer lives – funny, it makes me think of the speed of a vehicle travelling across London at rush-hour, in 2017 we move a little slower than the speed of a horse thanks to congestion, running to stand still.
Was it worth it?
You wouldn’t and couldn’t un-invent the motorcar, just as you would not want to return to the bad old days; we might have variation in practice now, before, the variation was so wide it was as if different teams were on separate planets… Patient A is on Ward 2, their experience is 23, what more can you expect?
It’s was arbitrary and today there is more involved than the luck of the draw.
I suppose, the lessons of history show that we evolve, grow at the speed of thought, through periods of rapid change allied with slowdowns, when yesterday was the same as the day before and next week. These phases – we used to call them biorhythms, the waxing and waning of development are likely necessary to avoid burnout – think of 2007 and the iPhone; since its inception, we still have weighty, mostly black, metal objects that can do a little bit more – there is nothing magical about the latest app, as when Steven Jobs held his phone up to the audience ten years ago.
One of my favourite songs contains the line, ‘Worrying about the future is as good as chewing gum to solve an algebra equation,’ yes, we can’t anticipate or expect when the next mass-extinction event or our move to a higher form of society; there might be signals, but there can be no certainty.
So, I guess, let it be.
Accept that I have slowed-down, just as others are accelerating.
It is hard, it is sometimes frustrating; at least there is always another book to read or game of Scrabble to play.
We suffer more in the imagination than in reality
So, says Seneca.
This was perhaps,
a premonition of Mindfulness.
It is the mind which leads to our suffering,
Not the world.
The world is our idea,
We make-up what we feel and see and hear;
Slaves to our imagination
and in control
that you drive
without reading the instruction manual.
Every system is perfectly designed to achieve the results it gets/
So, said Deming.
Or, it might not have been him, but some other American.
Take a group of likeminded people,
& avoid – diversity at all cost;
those who disagree are not likeminded
must be cast-out.
Bring them together,
get them to agree,
let them to have a good-time;
Over a glass of wine,
take what is made
is the sum-total
of the combination of ideas and outputs of the originators.
If the output is wrong, doesn’t quite fit,
If it gives you a result which was once almost or good-enough right,
Which was once consistent with the world-order, then,
But has not kept-pace, now,
has lagged behind
of changing times
And you take the same batch of folk,
and get them talking,
without them acknowledging that the landscape has altered,
what was correct then
is no longer &
what was good then
is now a flop,
without them possessing the humility
that the order
you are left with
Something along the lines of hubris.
A classical concoction of bleary-eyed losers
doing their best to maintain
in the face of a
126. Teach thy tongue to say I do not know
Those of you who read my last blog through to the end will have seen a painting of the 12th Century Jewish philosopher, astronomer and physician, Maimonides – sometimes known as Rambam*. The painting contains one of Maimonides’ quotes –
‘Teach thy tongue to say I do not know and thou shalt progress’
I love this as it so very well sums-up who I am and my approach to life – it encapsulates the ideas behind Quality Improvement that I am so committed to pursuing.
Only by admitting your ignorance can you learn; contextualised within this is the idea that you must first feel safe to admit your lack of knowledge or understanding, to express this to others.
We move from ignorance to knowledge; pretence does not facilitate growth.
Safety is of great importance – people must feel secure, appreciated and valued – this perhaps why, in keeping with some of my recent experiences, my world sometimes feels stifling.
A culture of openness and honesty – one which allows people to challenge accepted wisdom, to question beliefs and norms, is the one which will survive.
This is another form of expressing, that good will triumph over evil, for, evil, whether in the form of bullying, oppression, state-sanctioned coercion or right-wing censure, this approach always stifles creativity; the innovation required to win the war, to topple the dictator, comes from freedom of thought.
I was talking with colleagues last week and expressing the difficulty some doctors have when they don’t know what is wrong with a patient. There is a pressure to think of something, anything, to provide a diagnosis, and with this, an action, test or treatment which is potentially wrong.
Candour – ‘I am sorry, I don’t know why you are in pain/confused/tired/breathless’ is perceived by those who are less experienced as a demonstration of ignorance, rather than of openness or confidence;
Yet, ‘I do not know,’ allows the doctor to engage in a more open discussion with their patient and others, to determine the cause. (We move from the folly of one to the wisdom of the collective), This allows one to learn.
I am fortunate – I have been around long enough to be confident in announcing my ignorance;
This should perhaps become integrated into the training of doctors and nurses, physios and pharmacists – the conviction of ‘I don’t know’ aligned with, ‘I will find-out’ as a basis to the clinical interaction with a patient.
To revert to the personal – Dad, did you get the job? Why did I not get the job?
I still don’t know.
I haven’t been provided with an adequate explanation.
And this, is another form of ignorance when we are left in doubt, when we are left looking for answers and all we have is hypothesis and soul-searching; perhaps I was too slow, too limited, not right, perhaps, the stars were not aligned or, the politics out of synch.
In these situations, it is our natural instinct to look for answers; and finding none, we go on until we have forgotten what it was we wanted. This is growth.
Ignorance is not bliss.
Don’t just leave your patient with, ‘I don’t know,’ provide them a framework, a timescale for your investigation; safety-net, action-plan.
No one enjoys limbo.
*For those of you who are super-observant, this is the guy on the back of my phone J
127. The cardboard night
You see, one day when I was a student,
I got fed-up.
I can’t remember what is was that caused me to feel that way –
Likely, something to do with people
Are my currency.
I headed out,
having just finished
On the Road
And hitched a lift to Edinburgh.
Barely any money.
The days before cash machine overdrafts.
It was winter,
I know the season as I remember the cold.
And buddying-up with sleeping-rough man.
In those days, the conversations seemed less about homelessness
And more about
Edinburgh can be very cold at night,
Particularly if it is damp.
And the wind is blowing.
And, now I remember, all I had was the American Postman Jacket
I had bought from the second-hand store.
The one that Cliff wore in Cheers
Not the actual one,
But a lookalike.
Not the best for winter in Scotland.
And cold, so very cold and nowhere to go and nowhere to sleep
And we bedded down on flattened cardboard boxes
In the underpass
of the bus station.
I was always a bit dramatic.
128. The Death of Stalin
I had always known that Stalin was a bad man – from my childhood, when I heard stories of Refusniks and their battles to escape the USSR – that, and all the Cold War propaganda that surrounded anyone growing-up in the 70s or 80s.
It was only recently that I discovered how very very bad he was. Indeed, he and Hitler could easily take centre-stage in a contest for the most despicable people to have ever lived.
The film, The Death of Stalin, directed by Armando Iannucci, describes the insane weeks following Stalin’s death in 1953.
Setting aside the history, the film focuses on the shenanigans involving the power struggles between the various senior soviet officials to gain the upper-hand and assume the position of General Secretary of the Communist Party of the Soviet Union.
Michael Palin, Steve Buscemi, Jeffrey Tambor and others (Jason Isaacs is amazing), are some of the cast who demonstrate their cunning, ineptitude and, psychopathy in the wake of Stalin’s death.
I found the film brilliant and I recommend it to anyone.
Separately however, the film made me reflect on matters closer to home – the machinations behind big organisations, and my own favourite, the NHS.
I have recounted before my introduction to NHS leadership when a friend gave me a copy of Pillars of the Earth by Ken Follett – this portrays the scheming, conniving, trickery and politics relating to the 12th Century Church and cathedral building projects in medieval England.
I thought it an odd way for someone to explain, ‘This is how we do it,’ but, there you go – within a short few years that person had become a victim of the system themselves.
Take Yes Minister, add a dash of Michael Douglas in Falling Down, a soupçon of Auf Wiedersehen, Pet and you are almost there.
It is interesting to reflect on some of the great leaders of the 21st Century – take your pick, or perhaps, pick-on Hitler and Stalin – they managed to achieve feats of creativity and destruction that are without parallel; countries, nations, continents came under their direct command and influence – whatever properties of greatness, micromanagement or evil they possessed enabled them to ascend to positions of authority and cause the deaths and suffering of millions of people.
It is ironic, when organisations look to their leaders for direction – allow the ‘senior decision makers’ to lay-out the strategic plan for tomorrow and beyond, as if, we are somehow genetically programmed to accept without question that some folk have a greater understanding of things than others.
So, from the movie, it says to me that there are clearly good, even great leaders (I think Darius the Great of Persia, was quite a cool character), equally there are people who lead and despite great achievements can cause devastation.
I have the book ‘Snakes in Suits – when psychopaths go to work’ at my side – yes; certainly, Stalin and Hitler were psychopaths – there are likely individuals in organisations across the country occupying positions of leadership who fit the typology.
In 2015, I completed a Masters in Healthcare Leadership – a central tenet of this related to compassionate leadership. This is leading with your heart and mind, considering the objective of person-centred hospitals, organisations, departments as the only feasible way to see-in tomorrow.
Ironically, in the wake of the 2007 financial crash and the past decade of Tory NHS asphyxiation, we have found ourselves not in an environment where compassion necessarily thrives. But, where a more assertive form of leadership dominates, holds sway. They aren’t all psychopaths out there, although, potentially this helps and, just as Churchill was a great ward leader, different times require different approaches.
When I look across the Atlantic at Don Berwick, I see the embodiment of compassionate leadership; although I don’t know the man, this seems to be central to everything he is and does, down to the anecdotes involving his grand-children.
And the point of all this?
Well, it is a message to go and see the movie and when you are next in a position to blindly accept the dictate or instruction from above, assuming that they know best, perhaps, just pause and ask, ‘How does this affect me? Is it right? How does it affect the most vulnerable? The weak, the defenceless, the unrepresented?’
And then, perhaps, fight and fight and fight, and, if that fails, look for a visa, parachute or other means of escape.
129. The epigenetics of being a doctor
This could really about any profession – accountant, builder, policeman – it is the question of how the environment influences us, from inside-out – the effect of our experiences on our genetic code and development.
I have been thinking about the way in which my being a doctor, living for and within medicine likely influences my children – considering the ways that their upbringing has been different from mine.
We know that experiences, particularly those in early life have an effect on the development of children, which as a branch of epigenetics – that is, inherited changes that are acquired during life (instead of the standard genetic code that we inherit from our parents, within our chromosomes) – thus, particularly stressful events have been theorised to alter gene expression in such a way that behaviour can be altered and in turn passed-on to an individual’s children, altering their appearance, behaviour or even propensity to disease.
This is nature overwhelming nurture. Nature is our genetic inheritance – which used to be considered fixed; you inherit genes for blue eyes from your parents, you have blue eyes. This is why, in the case of a person losing an arm or leg during their life, they don’t pass this on to their children – this is an environmental influence.
I don’t want to go into this in too much details as I am by no means a geneticist – this field is damn confusing at the best of times, yet, consider this…
Person A is born into a family of doctors (going back to my original point) – and, that person’s father, grandfather, great-grandfather have all been physicians; will this have an effect on any inherited aspects of behaviour of the next generation?
How about not just four or five, but, 10 or 20 generations? Might this being to change the way in which people behave or develop?
Imagine 10 generations of breakfast conversations when the subject matter is accountancy or farming – will that effect how the children sitting at the table see the world, their interests, talents, inclinations?
Sure, we haven’t had multiple generations of computer programmers (yet), but certainly, throughout human history, it wasn’t that unusual for families to become identified by a trade or profession – those folk with workmanlike surnames… Baker, Farmer, Nurse, Teacher, Fletcher and so on.
From personal experience, in our modern world, it is only a minority of people who undertake their parents and grandparents trade (I know of a family with three generations of nurses) – will the caring, compassionate nurse-ness pass down, become concentrated? Will sixth generation nurse be more genetically a nurse than someone new to the field?
For me, a first-generation doctor, I can’t say.
Sure, there are elements within my personality that allow me to work as a doctor and deliver what I believe to be effective care – I know of several generations of individuals in my family for whom the adjectives caring, sensitive and compassionate would be central.
Essentially, there is nothing we can do about this.
I know the Nazis dabbled with Eugenics and I am not suggesting it a good idea for us to contemplate any form of existential planning – we are what we are and no more.
Yet, we are also our history. Our past informs who we are and who we will become and consideration of this, although potentially frivolous is essential if we are to grow as individuals and as a society.
As Alexander Herzen (and Dan Carlin) say, history is the autobiography of a madman.
130. The Hazards of Polydoctory
I started writing this, a little chuffed with myself as I thought I had invented a new word.
Alas, someone has beaten me to it, although their meaning is slightly different from the one I intend to use here.
In the Encyclopaedia of Ageing and Health edited by Kyriakos S Markides*, Polydoctory is defined as the situation where a patient sees multiple doctors and has different prescriptions filled at a variety of chemists, with non-prescription medicines purchased over the counter, adding into the therapeutic milieu – resulting in not just the bonkers/ logarithmic situation of prescribed drug-drug-drug interactions, but, with the addition of medicines such as Gingo biloba, Nytol (Diphenhydramine) and perhaps, Ginseng all creating a chaotic cocktail.
No. that is not my definition.
Polydoctory as I see it a situation which has only developed in the UK over the past 10 or so years, particularly since the dominance of specialised, ward-based medicine where specific units are dedicated towards the care of individual conditions – stroke, chest, renal wards, for example, and consultants are at risk of tunnel-vision, narrowed by the complexity of modern medicine, guidelines and regulation, and, the European Working Time Directive which limited the numbers of hours junior doctors are allowed to work.
This combination of events has resulted in a situation where patients admitted to hospital will inevitably meet not one or two doctors (as I can remember back in my student days of the now closed Law Hospital in Carluke), but five, perhaps ten doctors; this is not counting the nurses, therapists, pharmacists, healthcare assistants, radiographers, etc.
Yes – 21st Century hospitalisation can be an impersonal affair.
Because of the great number of individuals supporting the delivery of care, communication and handover are critical.
Yet, when you discover the working patterns of doctors, the ward and bed moves of patients, a dangerous situation can arise.
It’s like a Hollywood movie… One patient, four beds, eight wards and a hundred nurses, doctors and therapists.
Yet – this is the reality.
I was reading through a patient’s notes today – before arriving on my ward she had encountered four different consultants alone – that isn’t counting the registrars, junior doctors, and so on.
Each doctor imprinting their own impression on the patient, conveying their interpretation of history and diagnostics.
Doc 1 ‘Yes, Mrs P, your X-ray shows that you have pneumonia.’
Doc 2 ‘Mrs P, you can go home tomorrow, it was just a chest infection.’
Doc 3 ‘Brenda, I am worried that you might have something abnormal with your x-ray, we are organising a CT.’
Doc 4 ‘Mrs P, you might not be swallowing correctly, we are going to puree your food and thicken your drinks.’
Doc 5 ‘We’ll arrange a chest x-ray…. Oh, I didn’t realise you’d had one already.’
And on and on.
There are those who consider medicine to be an exact science. The more informed realise it is somewhere between the two extremes of science and art, or perhaps, science, art and shamanism.
Imagine Michelangelo beginning a painting, Van Gough taking over and Jackson Pollock adding the finishing touches.
Yes, the picture would be unique and would likely fetch lots of money at auction, but you see where I am going.
What is the answer to Polydoctory?
Well, I envisage several possible solutions, the first, expanding, up-skilling and empowering the multidisciplinary team so that there are more staff able to maintain continuity of care; Rarely does one nurse speak in detail to another doctor or nurse about their patient at times of transfer – we endeavour to read medical notes (predominantly written by hand in UK hospitals), and establish meaning.
Chinese-whispers gone mad you might consider it.
Would you be happy to fly in a plane where the pilots swap-over with each other and just leave hastily scrawled notes? Well – that is modern healthcare.
A second option might be to work-out more meaningful timetables, in a patient and clinician-centred way, paying more attention to relationships – investing effort in their creation and development. This might mean more staff, it would however likely save huge amounts through reducing miscommunication and harm.
Alternatively, we could use technology, perhaps a digital video handover for each patient (held by the patient), doctors talking to doctors – as if!
We could try to move patients fewer times when they are in hospital. Each time a person who has dementia or delirium is moved they stay longer and their disorientation and risk of harm increases.
Even better, we improve the services in the community to help more people stay at home and avoid hospital admissions in the first place; then you might have another problem of Primary Care Polydoctory, but at least most surgeries have a fairly limited number of doctors and nurses to minimise patient confusion.
I’ll end with the story of an old man who lived along the road from me.
I popped in to see him a couple of times before he died and his wife reflected back on yesteryear when their local GP would hop across the road in his dressing-gown to tend to their daughter, and how that is not the relationship they have nowadays with their local practice.
Times have changed, and although you might not know your GP or hospital doctor as well as thirty or forty years ago, thanks to advances in technology you have a greater chance of recovery and living a long and healthy life.
Like the shaman talking to the guys in lab-coats, perhaps we need to aspire to something in the middle.
131. The past (Glasgow Jewish Community, dementia & reminiscence)
Is the past best left behind?
Yesterday, the day before, OK – what you are up to, what’s going-on; but back thirty, forty years and more – what does this add? How does this shake-up our present?
I have just joined a reminiscence group from the Glasgow Jewish Community I left behind many years ago – my ‘time period’ was late 70’s to mid 80’s, I then moved-on. I did return, but was never really part of the scene.
So, in the featured years I was five to 12; seven years out of my current 40-odd.
There are others who are older – in their seventies and eighties, reminiscing on their lives back in the 50’s.
And, to me there are a couple of weird things – first, the person I was then is no longer – I have morphed physically and spiritually; sure, you could recognise me from a picture if you stared long enough, and there would likely be aspects of my personality that have persisted – enjoyment of quiet, puzzlement with technology, love of nature. But, most has likely shifted – transformed over time.
And the second, most interesting, which relates more to my present, is that these reminiscences are so akin to the lives of the people who have dementia I work with.
‘Janice’, 87 who was diagnosed with Alzheimer’s eight years ago cradles the doll, searches for her mum and worries about getting home for dinner. It is impossible to say where her mind has taken her – to what specific age or era, and it is likely her perceptions are a hodgepodge of different timelines and events. She sees the world through her ageing eyes, but sees herself as eight or nine or ten. The haziness, diminution of light from cataracts or macular degeneration potentially adding a yesteryear patina.
I talk with Janice, and explain I am the doctor – she can reconcile this as when she was a girl, the doctor would have been present;
And I reflect on the people who have joined the reminiscence page – how many of them will have lived through grief, failure, cancer, joy – how many will currently be living with dementia and this technology perhaps functioning therapeutically to ease their experience.
Living in the past does little for the present or the future, with the exception of those historians who rally against us repeating our follies.
I watched a TV programme the other night with Andrew Marr – the story of The Great War. Interestingly, in the 1916’s similarly crazed politicians incited the British population to all-out hatred of Naturalised Germans living in the UK, using the same tactics of lies and fabrication as Johnson and Farage last year. Anyone seeing the ease with which nationalism slips into mindlessness could have predicted the EU referendum.
So, this kind of past is good, and it is likely not particularly harmful to look back and think how far you have come – if you have travelled a distance;
Like other aspects of Facebook, there is always the risk of comparison. Measuring-up your successes with those of peers; like the harm associated with teens sitting alone at night flicking through updates of friends and class-mates out enjoying themselves, taking snaps of the good times, burying the bad – portraying a timeline of smiles without the lows.
So, modern technology meets yesterday’s Glasgow Jewish Diaspora and brings people together.
Make the most of it while it lasts – don’t look too closely at the details, allow the cracks to be papered-over by whatever strategies people have used to get-on, accept that life is hard for most of us and for all the good times, there are bad, for all the celebrations there are tragedies.
Move-on and revel in the Yiddish.
132. The Perfect Patient Pathway
On Friday, I attended an event where I learned about the Perfect Patient Pathway – I will call it PPP, or perhaps 3P for short, as it is a little bit of a mouthful, although entertaining in an alliterative sort of way.
The event, run by the Good Things Foundation focused on examining the ways in which those working in health and social care use, relate, understand and promote technology.
One of the first interesting aspects of the event was revealed in a table-top exercise where we expressed our feelings in relation to tech – unsurprisingly, many of us reflected the negative or downside – feelings** of alienation, disempowerment, fear and risk – when the internet goes bad, toxic websites, data scams, the superficiality, exclusivity and competitiveness of the next new gadget; despite this, the majority (in fact, all of us) in the room spend most of our lives immersed in technology – from the electricity that powers our toothbrushes to the kettle, microwave or Satnav; none of us were digital natives, but most of us have gonenative.
The purpose of the lesson was to let us examine how much we are dependent on tech, although more specifically, to demonstrate how our lives are simplified, improved, streamlined by technology.
For most of human history the fastest a person could move was the speed of a horse – the modern world would be inconceivable without the cars which bring with them all the fun of commuting, holidaying and road-tripping (and crashes, pollution & congestion).
So, if we, those living in and benefiting from technology integrate devices into our lives with such facility that we struggle to move from A to B without the help of Google Maps, why do we not do more to support or at least encourage our patients to become digital?
We talked a little about barriers – with most people expressing that in healthcare, although there are the traditional obstacles that some might perceive – old folk struggling to remember control-alt-delete or, upgrade to the latest iOS, for example, the most frustrating and limiting obstacle most of us (that is, health and social care professions) encounter is the antediluvian relationship the NHS has to technology and Information Governance. ***
I have written about the fax absurdity before – the way in which I see a patient in clinic, dictate a letter electronically which is then typed by my secretary who prints it and posts it through the mail to a GP surgery where it is scanned into a different system before being seen by the GP.
You see, email is considered unsafe. Dodgy websites, phone-lines, data storage mechanisms – all threats, real or imagined that keep us buying Fax cartridges from Staples.
One of the demonstrations I provided to the room was the use of WhatsApp within my team in Mallard Ward – we have used this tech for a couple of years (we were early adopters, I believe :-)). Communicating where things have gone wrong and right, celebrations and appreciations, reminders to be mindful of hand hygiene or documentation from scrupulous healthcare assistants help maintain a healthy ecosystem that ultimately provides fantastic, high-quality, safe, patient care.
The takeaway message? Do something! Reduce the glacial divide between technology and patient care. Acknowledge the ability of people young and old to take advantage of their own health and wellbeing through technology. See it as a partnership. Know your conditions – explore and learn – get informed! Challenge the doctor or nurse, ask questions, don’t remain passive in your relationship, adopt the power of the net to shrink the hierarchy.
Not all tech is good, much isn’t useful. We can however collaborate, become ambassadors for the future.
The present and the future are all about people, human relationships, connection and communication. The latest gadget from Microsoft or Apple cannot replace this, even when the robots begin to talk and dance, they will still be machines. Cutlery is a technological advance on using our fingers, let’s apply this wisdom to health and care and see where we can go.
* I haven’t really talked much about the 3P – I’ll come back to this in a later blog once I have learned more.
*Which makes an interesting question… How do you feel about technology vs what do you think about it… different sides of the brain – different perceptions perhaps?
** Referred to twice on the day as ‘behemoth’.
This Blog is mindfully dedicated to our number one healthcare assistant Michelle Appleton.
133. The Red Sea
There was a song we used to sing in primary school,
It had to do with the Israelites
And the Red Sea.
The way it was, back then, in pre-history,
Or, if you are a believer,
The way it was, was,
The Israelites escaping from slavery in Egypt.
Moses led them from Cairo and Giza,
Luxor and Memphis,
Gathered them up
All in one night.
After the death of the First-Born
(When Pharaoh in an ultimate response to ‘Let my people go’, said, Go!) (for the Angel of Death (aka Moloch Ha-Movet) did not pass over his palace)
And the Israelites fled,
Carrying their unleavened bread
And whatever else they could grab
On their backs,
Across the desert.
Some time later,
Pharaoh regretting his decision said to his charioteers,
‘After them, get them back!’
And the Israelites trapped between an angry army
And the Coral Sea.
And Moses raising his arms, and the waves parting and across they went.
And the waves crashing-down on the soldiers in their pursuit
And their watery graves,
Two generations wiped-out in short-shrift.
And the Israelites safely across the other side
For who would not be cheered by the defeat of the enemy.
And, God angered at this display of hubris,
At their lack of compassion for the lost lives,
The bereaved families,
Took his people in hand and remonstrated at their joy.
‘Do not celebrate the downfall of another,
What is done is done
And we must move forwards
And create a life
Without revelling in the agony of the other.’
134. There is no money
There is no money, the coffers are empty.
I hear this so often in relation to the health service that it has become a mantra. The flip side is, when the coffers were full (the good old days) we were too busy spending to appreciate what we had. This is being human.
Austerity versus plenty.
Two sides of the same reality. Both jangling in your pocket as you work-out where to go.
The UK is one of the richest countries in the world – a world that is experiencing unprecedented wealth. Massive riches simultaneous with swingeing poverty.
Wealth and poverty.
And, despite our experience of plenty, we also feel restricted, put-upon. Limited by what we can or cannot do because of budget…
Funny – over seven days at work I heard gasps of shock and horror (yes, there were physical in-drawings of breath) from colleagues at my suggestion of using social media in healthcare when another group – possibly more informed, switched-on, sat-up and agreed that this is a way to move forwards.
Much of this boils-down to creativity.
How creative are you? How big is your imagination? Can you dream-up new ways of organising at the same time as running from the storm?
We have no money.
I bracket this with the same ideology that makes people shudder at new ways of working, different collaboratives, concepts of risk-taking or thinking outside of the box.
Don’t suggest, do, think or even look in that direction (of new idea, methodology, practice, approach) – keep your bowler balanced straight and keep moving forwards. Deviate and you become a deviant. Too dangerous, too new, to unusual, too risky, too little or too much. Just… don’t.
This is at the core of conservative orthodoxy that keeps people sheltering in caves; that maintains the status quo.
We have no money.
Is another form of this, it is another constraint on action or thinking; instead of viewing our situation as being one of prosperity, we live in limitation.
Our health service is considered cash-strapped and battles are fought over what are perceived as the last remaining scraps of the pie.
To grow, create, evolve, you need to take risk, you need to feel safe, you need to not have someone saying – ‘We have no money!’
Park the money, park the fear and experiment; it is surprising how far you can go on the back of ideas and enthusiasm.
Things have lost their value,
have become null and void;
We are looking at more realistic measures
the next phone
Looking beyond or behind –
the ephemera of joy
Of money bought item
sun rise or set.
has lost its economy,
become devalued by the pace
And the night
upside down by
zero hour contracts
and lack of respect for the individual
is being reviewed
the appreciation of another
synchronicity of ideas
You think what I think and we think together
the same thing
for the same thing
Is just being.
136. This is me 33%
On Wednesday, I gained an insight into my problem with numbers. I shall explain.
It is not uncommon for me to tell people that I don’t like numbers or that I find data and especially statistics off-putting. Sure, I am able to work a calculator, understand square-roots and algebra – that is not what I mean; I even ‘get’ basic statistics.
No, that’s not it –
It is the overuse, the sometimes superabundance of numbers in healthcare that maddens me. When folk quote figures:
‘Eating tuna fish increases your risk of mercury poisoning by 12%’
‘Pollution causes an extra 1200 deaths per year in Devon’
‘1,000 units of Vitamin D a day protects you from cancer/heart attack/depression ’
Facts like these, which are of course not facts, just words and made-up numbers. Yet, when you hear someone in authority quoting them, particularly a doctor or, even more frighteningly, a professor, people tend to be lulled into a state of credulity paralysis and are led to believe anything.
The five-year survival rate for your cancer is 50%.
In five years, you will either be alive or dead; zero or 100% – there are no halfway measures in life.
And this is touching the core.
Statistics you see, do carry some meaning, they essentially reflect the odds or likelihood of an event, and within biological systems, or human populations, the most accurate statistics are those involving lots of people, not thousands, but tens and hundreds of thousands. The more accurate the statistics, the more impersonal the data, the further away the predictions are from individuals.
And here it is.
My adoration of person-centred care, the value I place in this system of interpreting health and wellbeing can only be seen through the lens of the individual. One person, one experience.
One in a thousand people may experience an adverse event, yes, 999 folk will be fine, but, I am only really interested in who that one person is.
So, this is me, this is who I am. It doesn’t matter what happens to anyone else – it is my success, failure or survival that is important. The outcomes for the person I love are all I know, all I can perceive.
Put away therefore your estimates and calculations; don’t reduce the risk of my developing an infection by 95 per cent, just, wash your damn hands! Don’t shorten my average length of stay – get me out of here as quickly as you can and don’t play games with the economics of healthcare, do what is needed and get me right.
137. This is me (&you
Many of you reading this will be familiar with This is me – the person-centred document we have been using in the hospital for the past five or six years. It was originally developed by the Alzheimer’s Society working with the Royal College of Nursing, then, a couple of years ago I got together with Helen Sanderson and we re-designed the form to better meet the needs of my patients and their carers – I will explain the difference in a moment.
Since those early days, when the document was seen as something out of the ordinary, perhaps providing unnecessary clutter to the information overload hospital staff experience, it is now, at least on the wards caring for older people in Doncaster, an essential part of the assessment.
Knowing what is wrong with your patient is critical – being skilled in the practices and technology required to investigate, diagnose and treat are essential, yet, in the 21st Century we discover it is not enough.
We, and our patients do not want to be anonymous. It is acknowledged that people have preferences, hope and aspirations, fears, that are different to the rest. We are not just ‘patients’ we are Rod, or Sally or Joanne. We have expectations, anxieties and fears, that are central to our experience and the outcomes.
Successful recovery from an illness or operation can depend as much on the skill of the doctor or surgeon as well as the patient’s inner thoughts. Despair, worry and hopelessness do not engender a healthy immune system, they do not lend themselves to a positive mental attitude.
And so, to This is me. This is me – the ‘This’ capitalised, I am not sure why, but something we have done since the start, perhaps implying the importance of the document, a little like the way we use capital letters for peoples’ names and the names of cities and countries.
When we started using the document, the Alzheimer’s label led to some questioning whether it was appropriate for them or for their relatives, ‘This is for someone with dementia, my mum/dad/brother/wife/ doesn’t have dementia,’ – this coincided with the growing awareness of delirium as an entity and the reality that not everyone who is disorientated or confused has dementia, indeed, the growing realisation that dementia is more than memory led to a general broadening of understanding.
And so, this, in combination with some, what we felt important aspects of the document led to us integrating the layout with Helen’s One-Page Profiles and we created what is used across the hospital in Doncaster today, and, has been shared nationally and internationally as an example of good practice.
For those of you unfamiliar, I will attach a copy at the end of this blog. Before that are some examples of forms I have read over the years, that have particularly stood-out as representing something deeply meaningful.
This statement, which at first might seem trivial is in fact very important. Up until recently I would relate this to the conversation of, ‘I don’t like tea,’ and the real-lived experiences of patients who are offered a cup of tea multiple times a day.
If you tell someone you don’t like tea and they bring you a cup of tea, after a while, you feel that you aren’t being listened to. A little like the repetition experienced by patients during their hospital journeys… ‘Do you have any allergies?’ ‘Do you smoke?’ ‘Have you always looked this way?’ The more you are asked the same question the more you start to feel then believe that no one is listening. A ‘computer says no,’ tick-box, faceless, mentality.
More specifically, in the stroke unit, for patients who dislike bananas, this is even more important – bananas are often central to the armamentarium of speech and language therapists; the fruit can attain different consistencies, facilitating an easy way to assess a patient’s ability to swallow.
Imagine, if, because of a stroke, you are unable to communicate, and then, imagine that every few days a well-meaning person comes to your bedside and offers you your most dreaded tropical fruit, whole, mushed or pureed…
Do you like physical contact – does a hug make you feel better or, does it make you blanch? Do you like music? Would the Beatles drive you crazy or Vera Lynn up the wall? What did you do when you were younger? What was your job? Do we use jargon as you are head of the department of biomedical science or do we translate the pathophysiology into layman’s terms?
It is not just what you say, but the way you phrase your sentences, the expectations for someone who is hard of hearing but doesn’t like hearing-aid, or specs, or whatever.
We are all individuals, and, if the 21st Century has one dominant theme it is personalisation, individualisation – not yet for all citizens, but a work in progress.
And, this is the plan.
Just as you can personalise the screen of your phone, we need to tailor healthcare to your individual needs and preferences. This way we achieve better outcomes. Accepting that healthcare is an ever more expensive commodity within a world of austerity, it does not cost much to discover a person always wears a shirt and tie, or hat, or watch or lipstick.
And, perhaps in the health and social care system of the future, for, none of us know when we will be in-need, this is something we will have ready, prepared for the unexpected, like a will or life, or driving insurance.
If anyone would like a copy of the Doncaster This is me, please let me know and I will send you one.
138. To learn
To learn you need to go towards that which you like least;
It is no good sitting in comfort.
If you like the summer, pursue the winter,
If the light is your preference,
Go to the darkness.
Growth can only occur through a connection with the unfamiliar
that takes us away from conformity
Seeing the world in all its different dimensions,
Stepping out of your pool
Not battering someone over the head
for thinking differently to you,
Blue as yellow or green or red;
Nothing is real;
we all exist in relativities,
to one another
with each other.
When people move towards politics,
Things start to fall apart,
Whether nationalism or patriotism or whatever system
of belief that
To be free you must understand bondage;
When the world is served to us on a plate,
there is little struggle
when things just
We are left
Not quite knowing
What is right
What is wrong
What we have worked towards
and what is a gift.
Take for example
All food tastes better on an empty stomach;
we are able to appreciate the variations,
of savoury and spice
When we are not overwhelmed with excess.
This is more than a study of the opposites,
It is an interpretation of
an analysis of how best to live,
how best to grow.
of an old man
who has suffered.
I love looking at the late winter trees.
Branches sketching an intricate skeleton
The lungs or the brain
of a Gunther von Hagens
birds settle on the branches.
they lark and fight for space and
taking comfort in the company of the flock
until it is morning
and they fly away to look
141. USA, etc.
Born down in a dead man’s town
The first kick I took was when I hit the ground
End up like a dog that’s been beat too much
Till you spend half your life just covering up
I am not sure why the opening lyrics to Bruce Springsteen’s ‘Born in the USA’ are whistling in my ears this morning. Perhaps, like my recent entry, I am thinking about the fallen, their potential successes, how great they might have been had others thought or behaved differently.
Imagine, in ancient times, instead of peoples busy with conquest and power
They focused on collaboration,
Instead of the futility of war,
Of building trenches, they built houses
And just got on.
Our primitive urge to compete for whatever can be fought-for,
Our desire to squabble over the smallest article of land or possession is what leads to our downfall.
Look at my intercontinental ballistic missile – it is bigger than yours;
If Freud could see us now, he would be laughing at the priapic posturing of America, North Korea and most recently Iran.
And so too in the workplace.
Instead of letting others get on getting on,
There are folk whose egos are a point of instability,
Who care more about their tiny patch of land, or office or empire
Than they successful outcome of their people.
Is this inevitable?
If it is, we are doomed.
Yet, in 1962 when the generals were shouting at JFK to drop the bomb,
Admittedly the assassin’s bullet the following year did not spare him, but he spared us.
who opted to ignore the Soviet nuclear missile early warning system
Telling him the Americans were attacking
And who was later vindicated
As it was a glitch,
Sunlight reflecting off satellites that almost caused the end of the world in 1983.
There are folk out there who will sacrifice themselves for the cause,
Who will put the people, humanity before their own fear of extinction.
Let’s celebrate them
And downplay the others.
UTI – Urinary Tract Infection.
UTI has become part of everyday language. A meme that represents our changing society. Twenty years ago, when I was at medical school UTIs existed, there were however still within the rarefied lingua of the doctors.
UTIs have grown and changed, morphed from something specialised, something that you needed a medical degree to diagnose, into a 21st Century commodity like Vapes or cans of Red Bull.
It is not uncommon for a relative to tell me that they think their mum or dad has a UTI.
‘They always behave like this when they have a UTI,’ or, ‘It’s a UTI – you can smell it a mile-off,’ and, words to this effect.
Relatives and carers aren’t to blame for this quick-fix, quick-fire method of diagnosis as the whole health and social care economy has jumped-on the bandwagon of UTIs, not as a panacea, but as an explanation most that goes wrong with older people – falls, confusion, pain, immobility, fever, non-specific blood-test anomalies; you name it and it can be caused by a UTI.
You see, when a scientific approach is taken and the situation analysed, we discover that there is more in the world of frailty and ageing than urine infections.
In reality, UTIs are actually more complicated than an older person smelling of pee.
Smell is not a UTI. Smell is just the smell of pee.
Falls. Older people fall. They also on occasion become confused; this is delirium – a reversible condition akin to dementia which is irreversible and, which can also be experienced by people with or without UTIs.
As we age, our microbiome evolves; the bugs living on our skin, in our bowel and bladder alter. Urine is meant to be sterile, although often, in older people, bacteria get in, but, instead of pathogens causing disease, are just either commensals – living in harmony; tourists in your urethra.
These aren’t UTIs; for this purpose, we invented Asymptomatic Bacteruria.
Treating asymptomatic bacteruria is a little like the tactics sometimes used by Texas police; stop and search. You look iffy… I’m taking you down the nick.
Time has fuelled the growth in UTIs in A&E and, in 21st Century Healthcare in general. The numbers of people, seeking assessment, diagnosis and treatment, all, squeezed into a limited window of opportunity encourages quick fixes; botched jobs that take you nowhere;
This is the prescription for Trimethoprim, when, a person is lonely.
It doesn’t work.
Or, when an old woman is being poisoned by other drugs prescribed decades before to treat real conditions and which are no longer a risk – pain killers and blood pressure treatments are common culprits.
The answer, another drug that isn’t needed that compounds the insult.
‘It’s a UTI,’ doctors and nurses become complicit in this scam. Often this is given as a diagnosis when nothing else fits, or, when what fits is not congruent with what is apparent. And then, with more time, more reflection and analysis the diagnosis is undone – de-diagnosed and the medicine de-prescribed, we find ourselves untangling the knot.
The overuse of antibiotics globally is considered by some, to be as great a threat as global warming, international terrorism or avian flu. These are boogeymen that capture the headlines.
Nitrofurantoin – how can that harm you; go on, just a little prescription, just a few tablets;
My request? Well, that is to slow down.
Think UTI by all means, but don’t allow it to overwhelm the senses.
In most instances it is straightforward, and here is the trick.
Stop, look and listen.
When in doubt, don’t UTI.
When in doubt, stop, look and listen.
The patient will almost always have the answer; the befuddlement of dementia or delirium, aphasia or disorientation is why we have doctors and nurses – to disentangle to narrative.
That is the challenge. That is the effort.
Thank you, Wendy for the comment to yesterday’s blog. You mentioned the close-shave in my awakening to the values.
And, you are one hundred per cent correct.
If the values are at odds, you can’t go anywhere.
It is ironic, for within the NHS, values are so pivotal to everything that happens – the good and the bad. The establishment in 1948 of universal, free at the point of receipt healthcare reflected a societal value that has survived; just.
Three years ago, following the initial interview, I was advised that I didn’t have a future in the organisation, that, if I wanted to do anything meaningful, I should look elsewhere. The perception was that my values were not aligned with those of the higher-ups.
I didn’t heed the call. I know it’s not the organisation, for the place is made-up of amazing people who hold it together, who walk through the snow, juggle childcare and home-life to arrive for shift, who sacrifice, smile, care, feel the pain of others, and yet, when we consider ‘organisation’ we often end-up talking about those who are in positions of authority – the leaders, directors, managers. This seems unfair.
Yet, it is these folk who through dint of ambition and sometimes talent find themselves as the decision makers, the wayfarers who attempt to unravel the noise that carries disproportionate sway. And if, within this cohort there is a bad-egg or two, well, what can you do?
Wendy, referring to values was something I considered three years ago – I reflected on the irony of the trust’s expressed values – putting patients and staff first and, the lived values where around me colleagues were taken-out, prematurely retired, shifted to places not of their choice, manipulated into finding other jobs.
A sort of professional refinement; distillation; like the making of flour. The chaff is discarded and only the essence remains, the wisps of spirit that are adequately valued, carry-on. The remainder is land-fill.
And where does this leave you?
Essence of Groupthink.
Eau d’ blinkers.
And perhaps if you are special you go on fighting regardless; Robben Island here I come!
Yet, likely, the best approach is to accept the inevitable.
That you can’t divert the flow of the river without adequate resources. Yes, you have friends, colleagues, patrons and patients, but their leverage in this system is tiny in comparison to the machinations of the few.
It is frustrating but true.
I go back to Grenfell.
It was likely a tiny cabal who sat in a room and calculated the potential saving from dodgy cladding versus a more meaningful renovation. That is just the way it is.
We are all victims, one way or another.
By accepting victimhood however, this is not giving-up, this is saying, the strategies we have employed to date have not worked. We’ll find another way.
Ars longa, vita brevis, as Hippocrates said.
This is not a notice of giving-up; sure, it is a statement of change of direction, but, no more.
The challenges still exist, they are out there in ever increasing number, their complexity growing by the day.
Come now, let’s be having you; square go!
144. What makes networks work?
I think it is now established that the only way to meaningfully achieve anything new or novel, at scale, is through networks.
One person going it alone, battling away at whatever is not enough to change the world or create a movement; equally, although there are some very bright, creative people out there, the only way to move beyond the current moment is through the power of our connectedness.
One and one equals three or four;
The existence of Mallard Ward is a case in point – is it the result of incredible team working, a scintillating culture of care and support and a network of passionate individuals who have come together to create something special.
Yet, not all networks work.
Just having the people or the shared goal or sense of meaning is not enough; there needs to be a glue which holds things together. A website or homepage is inadequate, nor is money or fame, innovation or enthusiasm;
It is ineffable; it cannot be grasped.
You can’t hold-on to the magic that allows certain stars to align – to fit together in the best of best possible Goldilocks worlds to generate something special. There is no recipe book or field-guide that point the way.
We potentially stumble into these things.
Networks simmer with energy as they take the talent of one and combine with another and joining two to three to create eight, then 64 connections; exponential fizzing.
Some folk seek to destabilise the networks.
There are nutters out there who see something good, yet, because it doesn’t align with their interpretation of the world, seek to tear the bonds apart, to demolish. Yet, the network, when it works, is always greater than one or even two or three feral extremists.
Look at Al Gore.
I read an article about him in today’s Observer – he describes the way that democracy has been hacked by the likes of Trump and Johnson – egotistical bigwigs who bully their way to power and stay afloat by keeping people down.
Yet, Gore is fighting back.
He has established The Climate Reality Project, a global organisation to take-on the oil and fat-cat syndicates who are screwing our world; he is teaching lessons in un-doing the double-speak.
This is network generation to save our planet.
And, this is just as vital as the network of health and care which supports my patients, which keeps going despite the thinness of the air.
Good begets good, which lets us survive.
There is hope, there is tomorrow, there is coming together, holding hands or social media accounts; I am convinced that Facebook despite its malevolence in relation to the US elections was beneficial in the recent UK vote.
We just need to understand the power.
For social media and the networks they support are tools of fearsome influence;
Come together, right now.
145. What we know/humility
If you look back on a century ago, or moving further, a millennium, it is incredible to consider the changes in society.
I realised yesterday that it is nearly 100 years since the October Revolution.
If you subtract 1000 years, you are in 1017 – the Battle of Hastings was yet to come.
And, what will be 100 or 1000 years from now?
Will we be looking back on a version of the Bayeux and interpreting the comings and goings of guys dressed in awkward armour?
Will all of them be staring at iPhones?
I talked to some colleagues last week about de-prescribing – this is the modern-day equivalent of anti-alchemy. Where, doctors and nurses attempt to undo the folly of past times; we stop the harmful drug, reflecting on our ignorance only a few years before – ‘Huh, what good does that statin do someone in their 90’s?’ we might say. (Perhaps, it helped them get to 90?)
And, with this, the realisation that the certainty we carry with us today, the knowledge that staying out of the sun is good for your skin and, eating carrots is good for your sight, and, an apple a day, is likely to slip into the same antediluvian conception sooner or later. (But these, are scientific facts…)
How can any of us ever be certain about anything when we know that history is constantly re-written, when the moment more knowledge is gained we see things differently?
And this perhaps is my coming to terms with the meek inheriting the earth. Not necessarily the weak of spirit, but those with enough insight to see that certainty can only make you look daft; fundamentalism, fanaticism and, death before dishonour are all shades of the same silliness.
Let us all pause and reflect on our ignorance.
146. Where do we go from here?
When Dr King wrote Chaos or Community in 1967 he perceived the future – either we come together as a community or we fall apart in chaos.
The past fifty years have seen lots of coming together and falling to bits.
Community was a theme at this year’s BMJ/IHI conference – specifically in an approach to envisioning the delivery and provision of health and social care within a context of ever mounting pressure.
We can only improve the care of those we welcome in to our community – and this means re-defining community.
Doctors, nurses, therapists, patients, politicians, advocates. All groups aligned in tribal chaos.
It doesn’t matter how beautiful your organisational structure, how seamless the graphics the balance of boxes and lines; take one geometrically perfect structure – hospital – care home – university and mix it up, intertwine me with you – the patient who is a doctor, the doctor who is a carer, the patient who is more expert at their disease than the professor, mix and match – the Woolworths sweet selection and off you go; the system can’t cope.
Who is in charge? Who is responsible? Where is the permission? The rules and regulations; who will govern us!
One of the speakers at the conference was Tim Omer. He has type one diabetes. He is also a hacker – in the more modern, nuanced sense (cf Girl with Dragon Tattoo), in that he uses his skills to hack technology, translate the functionality of one gadget into something else, something potentially better that results in patient empowerment; the translation of the concepts of patient and disease into something else.
Moving from the pin-prick blood sugar sampling that most people with diabetes experience in most hospitals whenever they are inpatients, through the insulin pump and transdermal blood sugar monitor to Wi-Fi connectivity to phone then watch; All mixed-up into a device that monitors blood sugar, adjusts the amount of insulin released and informs the user of their glycaemic control.
The device Tim showed us was a hack. The users, the patients, the diabetics engaging in what the regulator would perceive as chaos.
Prototypes used on people who have placed themselves and their wellbeing centre-stage.
At the conference, Tim was centre-stage and it was fantastic to hear someone talk about the move from the passivity of patient to the activism of hacker.
I heard the term Wicked Problems used more than once during the conference;
An artificial pancreas isn’t a Wicked Problem – it is a tamed technology, homeostasis, linear processing, binary on and offs.
The Wicked aspect of the problem is freeing-up the capacity of the patients, their doctors and nurses, the health and social care system to allow the rules to be bent.
Watching Dallas Buyers Club last week, this was the same problem in action.
Patients deciding, they weren’t going to be cowed by the tricky relationships of hospitals, regulators and big-pharma; taking direct action. Coming together and shaping the future.
And how can I help?
How can I support this move inside my little microcosm of Doncaster?
A start might be another idea I heard at the conference – breaking the rules.
How many rules and regulations exist in our hospitals, health and social care systems?
How many pseudo or made-up rules and regulations?
There are the obvious ones – those which most wouldn’t challenge – smoking beside an oxygen tank, checking allergy status, smiling and being polite.
Beyond these no-brainers are the more opaque – visiting times, PJs and what you can and cannot wear or bring in to hospital, using your mobile, listening to music, questioning the doctor or nurse; challenging. Enquiring. Costumes, uniforms, leaving early, working late, creative thinking outside the regimented norms.
We are all individuals with separate needs for self-expression. The 1950’s bowler or IBM black suit are no longer helpful in the 21st Century.
Question, question, ask and challenge, accept dissatisfaction – safe is never safe enough, better is not adequate; Chaos drives the Community.
147. Winds and tomorrow
It is easy to re-live the past,
To sit and reflect,
Shine a light on what was.
There is certainty in last week or month,
That is distinct from
The possibilities of tomorrow.
Yesterday was good; I have forgotten the bad part.
Next month, who knows?
I woke this morning anticipating the fall-out from Hurricane Ophelia,
All I found were dead leaves.
If you are lucky and you haven’t been forgotten in five generations,
If, you have been listed in the annals of a history,
There might be a mark.
There have certainly been more people and events forgotten
Than we can add-up or, imagine.
Only one history remains of the Battle of Thermopylae,
History seen through a lonely lens.
And, I think of what might be, what will
I realise that the uncertainty over times past
Will become tomorrow.
If the spotlight stops shining,
Do you cease to exist?
148. Working 9 to 5
I just popped downstairs – my phone was ringing (Aker Bilk, 1030, Saturday evening).
It was the ward.
One of my patients had unexpectedly become unwell.
I felt touched and relieved that the on-call doctor felt comfortable ringing me, out of hours.
This is one of the hardest things to square-away when working as a doctor – when do your duties begin and end. Perhaps I would have felt differently if it had been three in the morning; I doubt-it.
Over the past decade, partially through compliance with European Working Time Directives (‘EWTD’) and more recently because of the mismanagement of medicine by the government, doctors in training experience a very different world to the one I occupied when younger; even that, however, was different to the work patterns that first introduced me to the life of a doctor; Doctor in the House – on-site living, on-call every second day, meals served in quarters, deference, cap-doffing and all that.
Yes – relieved that the 120 hour weeks are in the past, but the model of medicine, the image of doctor holding hand, expressing empathy and understanding has also shifted – moved so much that we not only have to teach the science of medicine, but also focus on the caring – the person-centredness.
When William Carlos Williams drove across the New Jersey night to deliver a baby, it was unlikely that he needed a guide on the duties of a doctor, to receive lessons in holistic practice.
And today; where does it end?
Today, doctors, like others are constrained by shift patterns; their relationship with individuals fragmented and disjoined.
‘Mary fell last night,’ you are informed, and, first thought, ‘Who is Mary?’
We have invented strategies to get to know our patients better – This is Me – the form that translates who a person is into a section of the medical notes;
I remember the Fall song, ‘Shift-work’ – does it work for doctors?
Yes – to a greater or lesser extent it is the only way to provide care within the complexities of the 21st Century.
Patients are no longer OK with receiving the wrong drug and the wrong dose from a bleary-eyed medic who hasn’t slept in 48 hours; just like our cars, computers and washing machines – we seek reliability and consistency, not something that is at risk of breaking-down on the hard-shoulder.
And the phone call.
I talked with the doctor, who despite his youth, I know will evolve into a fantastic guy – a doctor to reckon with, regardless of where he heads in his career.
And, as I sit here, my patients sleep – well, at least some; others not. They are getting by, through a complicated on-call, rota, shift-based, system of multidisciplinary working.
And my job ends with the end of the working day, and I move on, and perhaps prepare dinner, watch TV or feed the fish, and life become fragmented and this, I suspect is a loss, a diminution of the meaning of doctor.
It is in part this fragmentation which allows us to keep going, to work for longer than those guys 50 or 100 years ago.
And with this exchange, is clearly a loss.
A loss that I have yet to understand.
A loss that leaves me thinking, what is it to be a doctor. Is this role different to any other, or just a guy without a tie or white coat, flustered, capable of diagnosing and treating, like a multitude of other disciplines.
Or maybe, I am just tired
149. Yesterday – disaster avoided.
It is hard to know whether yesterday’s election result was a disaster avoided, or, merely a detour round the wreck to another unexplored place of misery.
Despite the polls, I never allowed myself to believe that the Tories would win; I didn’t seek shelter underneath the impossibility of Labour doing so well. I kept going.
The results – I don’t understand – perhaps in time it will come clear.
My enemy’s enemy is my friend.
They say this all the time in diplomacy, in the world of subterfuge and double-meaning.
I can’t imagine this is a place I will find myself.
Who knows what tomorrow will present;
I note that Mr H has been left-off the list or ministers who will keep their job; this worries me, for, at least with H and I guess, you could say with M, you know where you are – you know that when they draw a breath, the next thing is unlikely to be true, or at the very least a recognisable distortion of Right-Wing ideology.
Dress the wolf-up in the clothes of your friend and the subterfuge might work.
Alright, I’ll admit it – I had been preparing myself for many months of misery; of positive thinking exercises to lift me out of the depression, to distract me sufficiently to drive in to work each day without excess despair.
I had been preparing to shut-off the radio again, avoid the newspapers and retreat to my safe-place.
Now I am in-between;
If you read 11/22/63 by Stephen King, you find an alternative reality where JFK is not assassinated; only, this reality is worse. The outcome a greater disaster for humanity.
Fortunately or not, we don’t have time-travel; the Spare Oom door and the door in King’s novel do not exist and we can’t step back in time or travel to another world. Time can’t be changed by a manipulation of chronology.
The biggest feeling I am left-with, if, perhaps I look beyond the headlines and some of the pictures, is a sense of hope. For, regardless of where we end-up, the election demonstrated that there is a will in this country to move beyond me to we, from I to us.
Self-interest is seen as no interest, for you can’t live outside society, it is what keeps us afloat, the air that we breathe.
I still live in hope that before my kids have grown I can wake them in the early hours of the morning, jumping on their beds with, ‘We’ve won’ – time is running-out, they won’t be young forever; by increments we can move away from number-one, to number-x, from my spot of shade to the gallantry of open-plains.
Go on Jezza.
150. York – somewhere else;
I spent a few hours in York yesterday.
I travelled up to present some of the work we have done in Doncaster in relation to Quality Improvement, dementia and delirium.
Recently, I have been talking about the perpetual Narnia which the government has foisted on the NHS; walking into the reception of the York Racecourse – where the Quality Improvement event was held for the 600-odd delegates was like not just going back through the wardrobe, but shaking Aslan out of his stupor and having a jig.
The place was abuzz with positivity, can-do creativity and energy, I had to pause and question whether I had come to the right place.
There was a roomful of posters created by a multitude of departments across their organisation – discussing everything from falls prevention to sorting-out operating theatres and patient happiness. I have never been to a comparable event outside of big shows down in London.
Perhaps the post-election disorientation affected my perceptions; on three floors staff from different departments demonstrated their work – showed-off what amazing things they have achieved and plan to accomplish; it was positive psychology in action.
Why I am telling this story, is not to big-up York, although I think they should be bigged-up, but, more, to explain that despite all the crap, regardless of the illegitimi carborundum, they managed to pull-off something special, something that demonstrated the reality that good begets good, which leads to great and, you sometimes need that step-up to proceed.
Thanks to York for opening the Land of Spare Oom door, If only we can harness this energy, there will be no crisis, we’ll be flying.
151. You can’t always have happy endings.
Just finished watching Steven King and JJ Abrams’ 22.11.63 – based on the time-travel novel about JFK and Lee Harvey Oswald. It left me sad. But then, I always have been a romantic.
My grandfather, Ben, in his later years, used to read large-print books. He would devour them; his prerequisites for a good story were romance and a happy ending; he couldn’t stand it when the hero or heroine died, or their love faltered.
I don’t know if any of you have read the novel or watched the dramatisation; I can’t remember how the book ends – I am tempted to go to my bedroom and check (it is on a shelf beside my bed), but I don’t want that to either lead me through another sadness or down another path altogether. I can’t remember Sadie.
I wouldn’t say that I am obsessed by time-travel; that is perhaps not the right word. It is certainly core to what fascinates me.
I get it. Yes. It is not possible, nor will it be something I will ever experience and, if by some happenstance it were to become real, as all the stories go, you can’t change fate, you can’t alter reality or the trajectory of time. It is set. For every undoing of tragedy there are infinite layers of pain that you can’t conceive.
Many of these blogs or poems represent my shifting back in time – to when I or my brothers, or sister, mum or dad were young. Winding back the clock to a time that is not now.
Now is by and large not bad. It is at times fantastic. Mesmerising. Scintillating. Falling into the River Wye, head over heels, with D60 around my neck last Sunday was a particular highlight.
I have so much to appreciate; so many blessings to count. The gift of my family and my friends, my pets, sunrises and sunsets. All go together into something I consistently undervalue.
But, happy endings are special.
Last week I watched the Daniel Radcliffe, made for Netflix movie, Woman in Black. I don’t want to spoil the ending for anyone, although to be honest, it was a sub-par performance by the former wizard; yes, the hero dies. Fin. The ending is somewhere between happy and sad.
I don’t go for this. It has to be happily ever-after or nowt. Happiness or bust.
And, likely, this says more about me than anything else – I can’t bear the concept of things not going well. I, like all the rest am prepared to bury my head in the sand, chant Mandalas and pretend that nothing is amiss, so long as I and my family are OK.
Nam Myoho Renge Kyo.
Something like that.
Whether this is lack of spine, stamina or strength, whether facing reality requires more va-va-voom, or something else, I don’t know.
Let it be.
I say, and this is not usual for me – go to the DVD, watch the dramatisation – avoid the book and enjoy.
I loved it.
Happy ending or not.
152. You don’t live here any more
John*, you don’t live here anymore.
28 days ago,
we served you notice –
wrote to your family,
your (90-year-old) wife
and advised that
we can no longer look after you.
your behaviour is
challenging for us…
Again, you see,
There have been complaints.
The night you
entered Mrs P’s bedroom and
climbed into her bed;
peed on the floor,
or, the aspidistra,
That was not OK.
We know you don’t know at times
where you are or
you are doing.
Your capacity is, lacking;
for us, is a problem.
a problem for your family.
who must find somewhere for you to go;
Organise your relocation;
adaptation to another place
We have served you notice.
If you aren’t off very soon;
we aren’t sure what we will do – but, it is unlikely to end well.
The next tiff or tantrum or angry spat where you appear to threaten
or hold too tightly
to someone’s fingers,
and we will likely
Call the doctor.
No… this is not a threat.
We wouldn’t threaten to have you admitted under a section of the mental health act
that’s always an option.
Just, so you know.
Just so your family are aware
That the night-time antics;
Running around the garden,
Trying to climb through the window
over the wall
are just not something we can accept
nor can the other residents.
We may have offered you a home six months ago,
called this your
place of residence
homes are moveable feasts
You now must relocate
to another place
In the borough.
that is not here.
Change of address;
New carers or nurses or friends,
unfamiliarity within a vague space.
Dementia and struggling to form new memories,
allocated a place
that is better suited to meet your needs.
That is your name.
We honestly, really, do, very much care
are totally interested in your
enough is enough;
Periods of notice relate to the correspondence sent to relatives and next-of-kin of those in our society living in nursing and residential homes, when, after a period of assessment and review, it is felt that care home can ‘no longer meet the needs’ of that individual.
The most frequent reasons relate to situations where the person, often an older man who has vascular or another dementia, following episodes of aggression, anger, fear or agitation is felt to be having a significantly detrimental effect on other residents.
Most care homes do not take this decision lightly, for they know the consequences, which can be disastrous for the older person – the trauma of relocation is huge.
In some areas, we have community psychiatric teams supporting older people, who are able to work with the care home and the resident, review what triggers certain behaviours – inadequate lighting and the resident can’t see where they are going, confusing way-markers and the bedroom of another is mistaken for theirs, fear, pain or anxiety and they cling to you for dear life, unaware that their grip is causing pain.
There is much unravelling that can be done to rationalise patterns of behaviour that seem complex and, are described by some as challenging.
Seeing the person, perceiving the world as best we can from their perspective, or point of view, can take us far. Recognising triggers – hunger, a need for the loo, fatigue, all require sensitivity which are hard to programme into the scheduled protocols of a CQC compliant residence. Some of this cannot be learned, it is innate – an internal sensitivity; emotional intelligence that allows for unspoken communication and understanding.
Sometimes what is needed is, slowing down. Pausing. Observing. Listening, reassuring, empathising.
The person who cares and the people who care and those who sit in the centre, who, belong in the caring professions, the mystical arts of empathy and compassion.
Call it mystic if you like.
*This narrative is a fictionalised composite.
153. You made a mistake, dare I say…
Today I gained a further insight into the workings of hierarchy and patient safety.
On the ward-round we were discussing a variety of topics;
From this, as often happens we talked about one of my recent blogs, in fact, the one about the two old men, who yesterday became one, when Len (not his real name) was discharged, then this morning, Stan (not his real name, either), left the ward for pastures new.
It was at that point, we found our way to discussing Hitler, Stalin and organisational hierarchies, when one of the team – Lyndsey (her real name), pointed-out that I had made an error in my Stalin blog – I had referred to him and his fellow evildoer as 21st Century villains, when, yes, we know, they lived in the 20th Century.
What was very interesting to me was that Lyndsey had seen the error and discussed with her husband first, whether I (me, Rod) was indeed wrong (not something that happens very often) or Lyndsey had her centuries/time-periods mixed-up.
Lyndsey wasn’t going to let-on, which would have left the mistake occult, hidden-away, never to be amended, languishing in an erroneous sector of cyberspace.
My response was first, I was delighted that anyone had read the blog and second, how happy I was that someone had read with sufficient focus as to find a mistake. Hurrah.
After detecting an error or failing, the next step is to flag it – just as in medicine or healthcare, mistakes are only mistakes if they aren’t identified and there is no learning after the event.
I have now changed the blog and corrected the century.
And, moving forwards, what should happen – well, in the only safe, secure, system of health and care that can exist today, we have to be open about getting it wrong, acknowledge that errors are opportunities to learn and, that when something goes wrong, the failure is only compounded by not sharing and working-out ways to avoid repetition.
As with the challenge of insight, you don’t necessarily have to be confrontational to ask how another person perceives the world, you can be sly, you can use circuitous methodology to establish right or wrong, ‘In which century did Stalin send all those innocent folks to Siberia?’ for example.
‘Did you mean to prescribe penicillin for Margo – I thought she said she was allergic?’ or, ‘I am worried about Al, can you come and check him over.’
Perhaps the way ahead should be, after a student passes their insight exam to medical or nursing school, to challenge them with the invention of 100 non-confrontational questions.
‘When you said ‘cut’, did you mean…?’
‘Was it the left kidney?’
‘How about you try this tablet?’
‘I can’t find the defibrillator, where did you last see it?’
‘Can you remind me how…?’
‘Where do I start?’
And so on.
Asking questions is core to safety and growth and usually, having a good time.
For my indefatigable trainee practitioner buddy Lynz.
Photo – John Shuttleworth & Vince Hill (of Pebble Mill)
Copyright Rod Kersh 2018, All Rights Reserved.