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.

come together

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.

Whatever;

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.

rambam.jpg

*For those of you who are super-observant, this is the guy on the back of my phone.

 

Why I’ve been so upset (& dumplings)

It all began this winter.

The pressure was extreme, despite the mild weather.

More and more patients arriving, more people waiting to both be seen and admitted, and hanging-around even longer to get home.

‘When can I go home?’ Has become a mantra of my patients – matched by my platitudes… ‘As soon as we can organise care,’ ‘When the social worker comes,’ ‘Maybe tomorrow,’ ‘I’ll ask sister.’

The winter made me a liar.

And worse than that; it placed such unimaginable pressure on co-workers that behaviours were changed; interactions distorted.

There is a story by Shaul Tchernichovsky called ‘Boiled Dumplings’ (Levivot Mevushalot) – it is an idyll describing the process of cooking dumplings as an analogy for the experiences of students at the time (1920’s, Germany) whose lives were so constrained and pressurised, compressed within the confines of strict gymnasium life, that when exposed to the outside world, they explode with the sudden drop in pressure – become radicals, revolutionaries, (just as the dumplings burst if over-filled when dropped into boiling water).

I see my colleagues, challenged through a sort of systematic bullying that is emotionally and physically draining, who drink and smoke too much in an attempt to relieve the stress, who I see growing old before me, their faces lined by poor sleep and early waking.

Who have slipped from, Jean in the corner, retired postmistress from Fife, to bed 12;

TTO (To Take Out) & prescription ordered and form signed, tests completed and heaven-forbid you should consider changing/stopping any of the medicines at last minute; the spectre of ‘the Nomad’ (pre-packed dosette boxes), is relentless; the phone, ‘How many beds today,’ and on and on.

Fortunately, we have arrived at such a level of refinement of care, in my department at least, that the pressures have not caused a deterioration in quality – we have still managed to process the patients and avoid any significant harms (indeed, we seem to be improving all the time) – as if, ‘I work better under pressure,’ is the new normal.

And back to the rationale.

I came to the conclusion that this winter was likely to be the same as the next, and, probably everyone after, more and more compression, the workforce squeezed from coal into diamonds. The structure of our teams realigning, reforming, harder and harder.

And with this realisation, which was augmented by the announcement of the retirement age moving further away (really, does anyone of my generation believe that retirement will exist in 20 years?) – and the knowledge that my experience, my sense of wellbeing and those around me is likely to continue, accelerating towards the unsustainable reckoning of the winter months, and my need to do something about it.

Something about it.

That was my sense.

That, all is not lost; that, despite the changes, the ever-increasing complexity of systems and processes, the diminishing resources and growing need, there was a way out, a way to unravel the madness and, return compassion, caring and sympathy to the system, to embolden colleagues, bolster their emotions and create a workplace that will support decades more work.

It is all about meaning.

A few months ago, I wrote about Victor Frankl and his great book, ‘Man’s Search for Meaning,’ in which he describes the experiences which led to the creation of logo-therapy, Frankl’s meaning-based Psychoanalytic theory.

If you have a why to live, you can bear with any how.

The why is easy – helping people, easing suffering, being kind, caring, sensitive, listening, treating, empathising, supporting, leading, nurturing.

It is the how that dissembles.

How can you do all of this within a system which is under constant threat of collapse?

When people become process and individual’s numbers?

The how, was quite straightforward – developing a person-centred quality improvement programme in the organisation, to industrialise doing-better, to take the imaginings, hopes, ideas and aspirations of the thousands of our staff and provide a voice to support their solutions, to cohort their creativity and provide a translation.

Being the means to improvement, to doing better, to securing the future, was what I felt could be my how.

And that, was taken away.

That was when the system said, ‘You may have your how, but it is not our how, your how is not consistent with our principles, our values, or direction; we respect your difference, but please, take your difference someplace else.’

And that was shattering.

Without the how to see me through, without the answer to the turbulence there can be no continuing.

And this is my call.

First find meaning, and, if the meaning is diminished, is missing or fake, look elsewhere.

We become trapped in routines, imagining that our way is the only way, when in reality there are an infinity of options, of opportunities before and around us.

Meaning first, and the rest can follow.

So said Viktor and so wrote Shaul.

 

*This winter saw unprecedented numbers of early Painted Ladies in the UK – a reflection of our mild winter. What might a big-freeze have looked like?

 

 

Person-Centred Care – Why? Why not?

Now. Get serious. This is a thing – no longer a joke.

Scrub hands thoroughly, sterile gloves, prepare the skin; spritz of iodine and we are off; scalpel, blood vessels and threat; anatomy, physiology and biology – one giant balanced on top of another. Skill. Perfection. Precision, dexterity and commitment. No go o’er.

Admiring looks, aura. Passion. Dedication. Commitment.

In the world of medicine there are two sides to every intervention – the technical; the years of preparation and training, textbooks and articles, lectures, seminars and courses. The work.

And, on the flip-side, the non-technical, human factors. What distinguishes our performance from that of a robot or machine? The ability to sense the concern of another, to empathise, perceive and listen, to combine the talents of a team into an output that is greater than the ability of one.

To and fro, there is a pendulum swinging in every treatment, interaction or therapy. This is why doctor Google can only go so far, why for all the brilliance of computers at interpreting data, analysing patterns and signals, the humans still have a role.

And nowhere more than during a clinical encounter.

When doctor or nurse meets patient; when support is sought, an answer, and the other, healer; doyen of experience and knowledge assumes the burden of care.

There is a sense, in some circles, that all you need is the technical; without dexterity the procedure will fail, the anastomosis disjoin or the graft dissemble. And, sure, the incision must be exact, the aliquots just right to provide an accurate intervention, diagnosis or treatment.

Medicine is not a game. It is the most serious profession. Life and death.

And, yet.

And, yet, there is so much more than the technical, so much to understand that creates a meaningful experience for doctor and patient. It is not enough to hear the symptoms – they must also be interpreted, for content as well as context and emotion, the signs must be understood from the perspective of an individual’s world.

Without this, life-saving can be life-taking.

Without autonomy, the ability to control our lives, we become lesser, inferior – subjects who are processed by a medical machine, that doesn’t spit-out sausages, but might just as well.

An operation that is not wanted but perfect in commission is a failure; a drug that prolongs life and does not extend happiness or meaning – if the hours of our life are spent at the beck and call of a colostomy that horrifies or an amputation that diminishes the person physically and spiritually, we haven’t achieved our goal.

The technical is finite, the person, their wishes, hopes and ideas are infinite. The team, the dream collective is limitless.

The lessons begin in medical and nursing school; bright, young things are told to look-out for the signs and symptoms that will reveal disease, the rash, the limp or pattern of behaviour. Willingly, they are led on a dance macabre, imagining themselves Sherlocks in a world of diagnostic mystery and intrigue.

The battle is fought on uneven ground. The technology – dashboard, numerical indices of good and bad, molecular biology and evidence-based medicine are entangled in a mesmerising blend of future possibilities – a pill for this, a procedure for that.

The attraction of the physical tends to lure some into a notion that so long as mastery is achieved, whether though 10,000 hours of repetition or Xx digital algorithms whirring away, we can find the answer to everything.

Not realising that when you have infinities, that is, the people who are our patients, there can never be any solution, chemical or process that is intelligent enough to overcome all feeling or emotion.

It all returns to the person.

Medicine is heavily dependent on engineering, technology and analysis to achieve the breakthroughs that have been a theme of modern medicine; the life prolongation and disease modification which to some are still impenetrable.

We must embrace the blend.

Too much of one, without the other, results in imbalance.

We need the person. We need to consider the people and simultaneously juggle the technology. One informs the other.

So, don’t tell me you know what you are doing and you don’t need to listen to the ideas of others, to consider the emotions or feelings of your team, pretending it is OK to adopt a position of all-knowing when, all-knowing is a conceit, a deception & really today, that is now, the only way to solve problems, to treat, care or support, is through collaboration, through support, through respect and commonality. Not, going alone, but together, realising that humility is more powerful than arrogance or mockery, and, joking aside, this stuff is serious, not appropriate for an off-hand comment or jibe. This is beyond life and death, this is forever, this is endless and you and I are merely blips in the procession, let us never get too high or above our pedestal, let us not make-believe that yin and yang interpretations are adequate to carry us through. We need more, and more can only be got through listening, hand-holding, eye-contact, smiling, humour – not mockery, empathy, not condescension; allowing ourselves to be vulnerable and having adequate faith in those around us to know that they won’t take advantage the moment our back is turned, knowing that towering over all competition or greed or avarice is togetherness.

Person-Centred Care.

You care for the person. The person comes first. Not the investigation, diagnosis or treatment. We serve. We obey. We follow.

Together.

cuadros de botero la familia colombiana

Sleep

There is a science of sleep.

This evening as I was driving home, I heard Peter White discussing sleep disorders in those who are blind or have significant visual impairment.

Unlike our crepuscular cousins, humans are diurnal; we are designed to sleep when it is dark and potter during the day, creating industry, building things.

Central to this system is the function of the pineal gland and the hormone melatonin, which alongside an array of other chemicals regulates our sleep-wake cycle.

Light plays a central role in this which, via our retina which feeds directly into our brains,* makes us sleepy at bedtime and perky in the morning (for those early-birds like me.)

Sleep and wake are of huge importance to patients in hospital and, in particular those who have dementia and related disorders, where their sleep-wake cycle can be turned upside down; inverted. Added to this, reduced exposure to meaningful daylight and monotony, loneliness, immobility and frequent cat-napping and you have a perfect storm for sleeplessness.

The nurses on Mallard know all about sleeplessness; sometimes preceded by sun-downing – the change in behaviour experienced by people with dementia as light fades, cortisol falls and visitors head for home.

I sometimes jokingly refer to this experience as being akin to Night at the Museum – the Ben Stiller movie where the exhibits come to life as the lights go-down.

When my patients sleep during the day and are awake at night all sorts of bad things can happen. At night, with fewer staff, there is less supervision, with lower levels of light, the likelihood of falling increases, with night, shape-shifting illusions come-out of the dark, worsening confusion and disorientation; meals are missed (although we do our best to be flexible), as are tea-rounds; weight-loss and dehydration can ensue.

It is all a jumble. We aren’t designed to be up and about at three in the morning.

We try to rebalance sleep by increasing daytime activities, by talking, joking and engaging with our patients, getting them up and dressed, dancing, singing, drawing, painting.

Hospitalisation as well as being one of the highest risk experiences for older people can also be one of the most boring.

We try to break the monotony, I know however, despite some great work across the country, the standard experience for the average hospital patient – particularly someone who is older and trapped by pathway delays, is one of days that are long and uneventful and tedious.

Your pineal gland doesn’t get a look-in in these situations.

I sometimes resort to sleeping remedies, when the Horlicks hasn’t worked – Melatonin, the recent addition to the pharmacopoeia has shown some promise, but like all drugs, works for some but not others, more often than not the latter.

This is back to the start – it is shining the light on the complexity of care, on what it means to look holistically; to be responsible for the journey, beginning to end. Acknowledging that the old thinking – the doctor see, doctor do, is no longer adequate; only when all the dimensions of night and day, sickness and health are considered, in the round, can we hope to make a difference.

Enough is not good enough.

It is not just what you see that matters, but the hidden, the esoteric pathways of nursing and medicine, pharmacy and therapy, talking and listening. Night and the day; sleep and wake.

robin-williams-in-night-at-the-museum-3-is-heart-wrenching-to-watch-video

*Never realised I was photovoltaic.

June, 17th

He has big hair and stubble that is more than a couple of days old. And, as he squints from behind thick glasses he has a look that is questioning, uncertain and potentially disagreeable.

It was a few weeks ago.

The disposal room.

A place where service assistants, housekeepers and cleaning staff deposit their bags of clinical and regular waste – cups, tissues, bottles, that sort of thing.

The room is windowless, it has an automatic light.

Each day the porters arrive, take away the bags, leaving space for more rubbish.

Today the roll-cage had been removed and the bags chucked unceremoniously, randomly into a smelly heap.

The porter, I’ll call him Nick, wasn’t impressed. He was hugely pissed-off; he had to find an empty roll-cage from somewhere, load all the fetid, sweaty bags onto it before unloading them at the collection point for disposal.

You know how it is, there are some jobs no one likes, but which, we accept as being part of life – picking-up socks and pants from the bedroom floor, scraping burnt curry into the bin; mopping up child or dog or cat vomit – all these occupy a space of never much fun, always unpleasant.

The system, or, whoever had borrowed the original roll-cage and, subsequently collaborated in tossing the bags into the room were part of the same mechanism.

Nick was pissed.

Beside

Himself.

And, I got how he felt. I sensed his frustration, although, likely, not to the same extent; Soon, I was off, brewing my coffee, checking patients or replying to emails.

Last week I read the novel, The Girl Who Saved the King of Sweden, by Jonas Jonasson.

In the beginning, Nombeko, the protagonist is a latrine cleaner in Soweto, she moves swiftly to manager then nuclear scientist, refugee and king-saver; Nick isn’t moving.

Most people don’t move; they don’t find an escape that changes their fate. We walk along the road and keep on going until there is nowhere left.

Nick, frustrated, went away, found a cage, came back, loaded and unloaded and so it goes, so it goes-on.

I wanted to step-in, to help, express my empathy, show that he was not alone, in his frustration.

We have this special ability as humans to look at the lot of another and feel great compassion, overwhelming affinity and, at other times, nothing. Not even numbness, just blank.

Walking along Euston Road last week, the homeless men and women, grimy, dirty, tired in the gutters, didn’t trigger a response; I was protected, shielded by my alienation.

As I glanced at the ingrained dirt, the sun-beat wrinkles, flaking skin and exhaustion, I looked this way and that, diverted focus to my phone, to the surrounding, road signs, traffic lights.

Look away; don’t look here. Don’t look there, don’t let anyone see you are looking at them, for, if eyes connect, the reality escalates and you find it harder to back away, to turn around and pretend everything is OK.

Nick, who works as a different, but equally important cog in the mechanism of health and care that I inhabit, spins round in his own orbit, interfacing with friends and family, colleagues and acquaintances.

There is an iPhone game called ‘Geared’ – in it you have to move around different cogs in order to create the perfect balance, to establish a coordination that allows you to move-up to the next level.

I see Nick and I, like that, spinning around, rotating in our own worlds, dancing to our own rhythms.

It is funny. We cannot live alone. We all need to be a part of society in order to exist, to maintain our wellbeing and sanity; isolationism might be proposed by a certain US president, it is not, however reality, it is counter to our evolutionary spirit, our prime directive, which is be, feel, grow & connect.

Where is Nick now?

I am sitting in my garden; washing machine just finished its final cycle, song thrushes and sparrows beckoning the twilight.

Where is Nick?

Still, dishevelled, tired?

I have so much to appreciate, that, I don’t see it.

Most of us do not value what we have until it is gone, until it is too late, when the moment has passed. When, we are old, looking back on a life that might have been different, altered for the better or the worse; lighter, higher, more enlightened.

I’ll end by thinking back to Jo Cox who died a year ago today and all the celebrations of diversity and unity that have been held across the country.

We all serve as counterbalances to the good and bad of society, we all carry the can for the aspirations and failures of our friends, families and colleagues.

We are the branches of the tree that must keep growing, as the roots are forced deeper into the earth.

Nick, I would gladly trade places, at least for that moment, to diminish your frustration, to accede to the reality of that windowless room.

Is grass really greener, or is it just grass?
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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 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, spreading eventually to the whole person.

None of us can live in isolation (beyond the Aristotle/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, evolved to live in groups, societies, collaboratively, supportively – if we allow disease to affect just individuals, to peel them off from society, for whom does the bell toll?

My hay fever affects me; it is me who is sniffing and snuffling through the night, yet, it has affects beyond my person, it reverberates 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 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; 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 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;

Don’t peer too 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 first, and my patient second, when my troubles or preoccupations 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 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.

xxxx

I learned yesterday a little about photons.

Photons are the smallest indivisible particles of light that exist without mass, without occupying space or volume.

Beyond this conception are different species of Photons. Entangled Photons are paired particles that are also indivisible. What makes them stand apart from anything else in the universe is that the two can never be entirely detached.

Stretch the entangled photons to different sides of the universe and what affects one will affect the other, no matter the distance or separation.

Like conjoined twins who share feelings or sensations regardless of distance or geography.

This takes us back to the notion that ‘we’ needs to be considered the smallest unit of society. And, this is not just ‘we’ in the sense of, my family, my town or tribe, but, ‘we’ in the sense that what affects one of us affects us all.

We are indivisible.

This is what makes us human.

photon