Manor Field Surgery Blog 10 Dizziness (three-part series) 

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As a young doctor and even as an ageing one, patients presenting with symptoms of dizziness are usually the ones that we leave until last, passing, if possible, to the back of the queue, the end of the day. 

This is not because we do not like people who are dizzy, rather, it is such a tricky condition and at times difficult to understand. (Doctors being (for the most) human, like to do the easy things first).   

I thought I would re-kindle my Manor Field blogs after yesterday’s over-65 flu clinic, during which it was apparent to me that many of our patients use Facebook and follow our surgery page. One lady surprised me with, ‘I’ve seen you on Facebook’ (picture below). 

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This suggested to me, that using my blog to convey health information might be a good idea. (If you are a Facebook reader and want to check out my blog, there is a link at the end.) 

Back to dizziness. 

I plan to discuss this in three parts as that is how I break-it down in my head when trying to determine the cause of a patient’s symptoms. 

I will start with postural hypotension, as this is the only area of dizziness in which I can claim any degree of expertise. In following weeks, I will discuss the middle-ear (semi-circular canals and all that) then the cerebellum (the part of the brain that controls balance).   

There are other causes of dizziness and I will touch on them. 

Postural hypotension. 

This is something I have discussed in several blogs and on Facebook. You might call it my favourite condition, not because it is something I particularly like, more because it is so often missed or under-diagnosed by other doctors, is potentially so debilitating to those experiencing it and can be treated quite easily. 

What is it? 

Postural, or as it is sometimes called, Orthostatic hypotension (or Orthostatic Intolerance) relates to the symptoms associated with a fall in blood pressure when a person changes posture, from lying or sitting to standing. 

It is mostly experienced as a feeling of unsteadiness or light-headedness; some people feel so topsy-turvy they need to sit or lie down immediately after standing. 

For a few, if they can’t immediately lie or sit down, they can fall, for some this coincides with a loss of consciousness – blanking-out. 

To explain how this works I need people to join me for a short course in physiology, otherwise known as human plumbing.   

So long as we are alive, we have blood sloshing around inside us. Blood is mostly liquid with some other components – red blood cells containing iron which give it it’s colour, white blood cells that fight infection and other innumerable chemicals, hormones, and biological substances.   

This means, blood obeys, for the most, the same rules as water. 

Blood runs around the body in blood vessels, arteries, and veins, pumping in a circle from the lungs to the heart then out to the body and back again to the heart then lungs. 

circulation

We call this circulation. First discovered by William Harvey, an English physician in the 1620’s. 

  circulation_500px

Now you have that picture in your mind, imagine water, or blood, whichever your prefer flowing up hill. The steeper the hill, the harder it will be to get the liquid to the top. To get that liquid ‘up’ requires energy, that’s the pump and functioning pipes – arteries or veins. You also need enough fluid. 

If you do not have enough fluid, the arteries or veins are not doing what they should or your heart is struggling, the blood does not flow and not enough reaches your head. 

If you do not have enough blood reaching your head you feel dizzy. If there is not enough for anything longer than a few seconds you risk losing consciousness. 

Hopefully, this has given you an understanding of what might be called in textbooks, the fluid-dynamics of blood. 

It is nothing fancy. When I syphon my fish-tank water into a bucket I’m applying the same strategy or, when I sip a drink through a straw. 

‘All this is very well, yet, you said it was easy to treat,’ some of you might be thinking. 

I need to explain a little more before I talk treatments. 

First has to do with the blood vessels, you see, they are not like the plastic tube I use to syphon dirty aquarium water, as they are capable of stretching and contracting, they can change their diameter depending on several factors – they can expand when more blood is required to reach a part of the body, your stomach, for example, after a meal requires more blood than at other times, or the muscles in your legs after you have exercised. 

  syphon

To supply more blood, the heart pumps harder and the blood vessels dilate. 

If the heart pumps harder and the blood vessels do not dilate you get high blood pressure, which is a topic for another day, if the blood vessels dilate and the heart does not pump-out more blood, your blood pressure drops and, yes, dizziness. 

There is more to this than I have written here and, I am not a physiologist, hopefully it has provided enough explanation to act as a primer in understanding some of what happens when doctors (through tablets) or disease (through effects on blood vessels) or medicines (through all sorts of mechanisms) influence blood pressure. 

Do you ever feel light-headed when you stand-up? 

When you get out of bed in the morning do you wobble and need to sit down? 

Weebleprinciple

That is often all it takes to reach a diagnosis of postural hypotension. 

This condition can occur semi-naturally if someone is dehydrated, this is easily remedied with a pint of water. If it happens regularly, and leads to you over-balancing or falling, that is the postural hypotension and is something I can treat. 

How do we diagnose this condition? 

When people are healthy, the natural response for your blood pressure is to increase a little when you change position. This enables your heart to pump blood to your head. 

When you are sitting your heart had less work to do than when you are standing. Standing is more uphill than sitting. 

We can measure this easily with blood pressure recordings. 

Lying and standing.   

It is that simple. 

You can read how to check your own measurements here. 

If your blood pressure lying is 120/80, it should either stay the same or increase when you change from lying-down to standing. From 120/80 to 130/85, for example. When you lie down again it should drop-back to 120/80 (or so, blood pressure naturally goes up and down through the day and from minute to minute).   

(The blood pressure doctors use to diagnose ‘hypertension’ is when people are sitting, again, a different subject). 

If your blood pressure drops from lying to standing, say 120/80 to 100/50, you likely have postural hypotension. 

It is that simple. 

The occasional drop is not usually significant and may be related to a degree of dehydration, it might happen if you have a cold or the flu and are feeling under the weather. 

Consistent drops of more than 20 mmHg (millimetres of mercury) over 10 is consistent with the diagnosis. (20 the higher or systolic reading, 10 the lower or diastolic reading) 120/80 = 120, systolic blood pressure (when your heart is contracting), 80, diastolic blood pressure (when your heart is resting in-between beats). 

What should you do if you find your blood pressure is dropping and it’s making you feel dizzy? 

First, sit down, then, talk to your doctor. 

We can help! 

The treatment might take a little while – we have first to establish the cause of what is happening, yet we should be able to make you feel much better. 

‘I quite like the feeling, why medicalise?’ You might think, and I agree, this is always a question when you are thinking of involving a doctor or other clinician. 

The problem with postural hypotension is that it tends to have two peaks, one when people are in their adolescence and growing and are quite fit, they may naturally have a low blood pressure (young folk call this a ‘head rush’); this is something that most people grow-out of. 

As we age, our blood pressure tends to increase, this leads to all manner of bad things such as heart, cerebrovascular (brain) and kidney disease and is a major focus of Western Medicine, that is treating hypertension – high blood pressure. 

As folk age, or other conditions intercede, such as diabetes, some start to develop postural hypotension which raises other complications. 

The most significant, particularly for older people (the definition of older is anyone who is older than you) when the effects of ageing can impair balance, coordination, and reflexes. 

All of this can result in one of the biggest risks to the wellbeing of older people – falls. 

If a younger person falls (anyone younger than you), they usually recover quickly, they might look daft, but the injury if any tends to be minor. 

As people age, the risk of falling increases and with it the risk of severe injury, especially fractures. 

In older people we need to do everything we can (that is ‘we’ as a society and ‘we’ as doctors and nurses and others in health and social care) to reduce the risk of falling which is a major contributor to loss of independence and reduction in quality of life. 

Older people fall more frequently than younger, when they fall the results can be worse; postural hypotension can result in a significantly increased risk of falling. 

That is one of the reasons it is important to investigate and treat. 

Other reasons relate to the potential harm of inadequate blood supply, even temporarily over a period of months and years to what we call end-organs, the brain and kidneys in particular. Postural hypotension has been linked to the development of dementia. 

I debated whether to include that last sentence as I don’t want to scare anyone, and indeed, the risk is probably small, yet, even small reductions in risk are potentially valuable. 

Treatment? Might be as straightforward as stopping a culprit medicine or increasing the salt in your diet, you might even require blood-pressure raising medicine. 

Get in touch if you have any questions! r.kersh@nhs.net 

If you enjoyed this blog, please give me a smile or a thumbs-up, if you are a patient and like our surgery, you could write a review. 

Be well and take care and part two will follow soon. 

 

A Grand Unified Theory of Nowt

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Yesterday I wrote about the default mind network (dmn), hallucinogenic drugs and mindfulness, amongst other things.

I am not sure how many readers related to all that, it is, I agree, obscure.

For me it was a revelation, not so much because I enjoying discovering new concepts e.g. dmn, it was part of an overall exposition as to what is going on, reflecting the interconnectedness of things, why what happens, happens.

It helps me gain an insight or understanding into the life I and others lead.

It’s like finishing a chapter on the book, ‘Life a User’s Guide

This is, incidentally, what kept Einstein going for a greater part of his life – the quest to discover a theory of everything; how the pieces fit-together.

I do not wish to suggest that I understand even one per cent of life although for me, unravelling my own and the behaviour of others is fundamental.

When I come to the end of a day and I am not wiser as to the trajectory of my life or the planet, or even my dog’s existence, I am a little let-down.

And this takes me to the subject for today.

It is the government. Or, how BJ came to be PM and the Tories have remained in power for a decade in the UK.

I know I have discussed this before.

It has been bothering me for ages.

I will not go over all the crap that has happened in the past ten years.

Some things have improved (the things that would have improved regardless of who is in power e.g. the speed of my broadband connection) and lots has got worse, predominantly not for me, but for everyone else, whether they are working or studying at a primary or secondary school, whether they work for the public or private sector, whether they have a bad hip or knee and want to get it fixed.

On a slideometer of life, things have got worse for a lot of people. (Or, the numbers who have benefitted from austerity have been small (Yes, you in your Jaguar), the numbers who have lost have been massive).

And yet, we, that is the people appear powerless, or lacking interest or motivation to make a change.

And it’s not just in the UK it is everywhere, although for me, most acutely in our country.

None of it makes sense.

The poor getting poorer and the rich richer.

The phrase, ‘turkeys voting for Christmas’ reverberates in my head like Brownian motes.

brownian

I listen to people attacking the Labour Party and wonder what the heck is going on.

ken kier

I see BJ incompetently flouncing from one crisis or disaster to the next and wonder what is going on.

We really have it all in the UK, or rather, the potential to have it all, yet, we seem to be content to give it away, to allow our talent and resources to dwindle to nothing.

And this is why I found the insight I gained from learning about the dmn so fascinating.

It is what our mind is doing when we are busy making other plans.

It connects my thoughts, and dreams and aspirations with the gremlins of my doubt.

And, to be honest, I find it hard to articulate my feelings about the political climate in the UK.

I find it impossible to imagine what needs to happen for people to insist on change, for our county to sort itself out and work towards a state of fairness and equality.

Covid has led to an unimaginable boom in the private healthcare industry. If you want your hip replaced privately you might have to wait a few weeks because the surgeons are so busy working away for private providers.

Sure, this is not as bad as the year (or two) you will be on an NHS waiting list.

I popped into Tesco yesterday; there was no pasta on the shelves (no petrol in the pump either).

And-then-we-told-them-There-was-a-gas-shortage

Brexit is hammering a nail into the coffin of our workforce.

Who will look after me when I am an old man? There will not be enough people in the UK to support me. Maybe the robots.

The nightmare of robots feeding me semolina. Robots wiping my ass.

robot

Our workforce is falling to pieces.

I reliably place my disused plastic in the bin for recycling; it is collected every fortnight. I am 90 per cent certain that it is shipped off to another country to be burned or turned into landfill.

Driving around this summer in my car, I looked at my windscreen and marvelled at the lack of splatted insects, we are running of our tiny creatures to support the biosphere.

People are scrambling to buy tickets to fly to Greece for October half-term. The skies will fill with contrails and more CO2 will accumulate.

Eton anointed multi-millionaires will continue to determine my fate, and yours.

Old lady A will move from hospital ward B to C to D then E before leaving hospital to care home A then B then back to hospital then care home C and eventually she will die.

This is what we are doing to our old folk.

Throughout my blogs I always aspire to find a way-out, a solution, the grand-unifying theory.

Yet, for the moment I can’t find one.

All I can do is dig down; take to the mattresses as if the mob is after me; hunker-down and focus on the little bits of my world that bring me joy.

Yes, my family, my dogs. Even my tortoise as he reflects on the summer just past. The shining conkers laying amongst the falling leaves of autumn. That kind of thing.

Go on, surely it’s not all that bad.

theory of everything

The default mind network, flow and magic mushrooms

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Yesterday I gained a better appreciation of life.

It was a fantastic moment.

For the past week I have been reading, ‘Entangled Life: How Fungi Make our Worlds, Change Our Minds and Shape Our Futures,’ by ‘Merlin Sheldrake.’

It’s all about fungi and moulds, their roles in the maintenance of life on earth (as an example, they enabled the move from aquatic life to land-living plants)(and now we have Sequoias.)

The chapter that threw me was about hallucinogenic mushrooms.

Magic mushrooms.

Psilocybin is a chemical that has come to the fore in the field neuropsychiatry over the past decade as it has been discovered to have potentially miraculous effects on the treatment of post-traumatic stress disorder, anxiety and severe depression.

Let’s face it, no one quite understands something as complicated as depression.

The exact biochemical events taking place in an person’s consciousness are beyond current science. (Think Pascal – if the human mind were understandable, humans would not be clever enough to understand it) (or, words to that effect).

For the most, we treat depression first with talking therapy (which can be very effective) and if that fails with medicines, usually SSRI’s such as Prozac.

I’ve just said, no one fully understands the underlying pathophysiology of depression. People have even less idea as to how antidepressants work.

When I joke about my work as a medical Shaman, I am not that far away from the methodologies of pharmaceutical companies who ply their trade.

I won’t go into the role the pharma industry has played in influencing the medicalisation of depression as that is getting off-topic and away from fungi.

You see, there is an idea that taking magic mushrooms, has an effect on something I had not heard-of before yesterday – the Default Mode Network, or DMN.

This is what happens to your brain when you aren’t doing anything.*

When your mind is not occupied writing a blog or holding a conversation.

It is part of the steady-resting state when your mind finds time to wander, when you might lapse into rumination; when you worry about the future, what you’ve just done or might do.

It is your brain ticking-over, like a car engine waiting for the lights to change.

You aren’t going anywhere yet lots is happening; you’re burning petrol.**

Now, had I been a cleverer fellow I might worked this out for myself.

And, you might have realised that when the DMN is functioning it could in certain people result in depression or anxiety.

I worry that I might not have enough time to complete all the work I have planned on Monday prior to the deadline when I will be asked to present the results of the… 

Kind of thing.

The worry-wort brain.

It seems that Psilocybin has an effect on this network, disrupting or allowing a re-set, providing insights into the workings of the mind, ‘I might be worrying about the report for Monday, but hey, look at the vast span of time and space, tomorrow or the day after I won’t even be able to remember that worry, so, why worry?

(I think of Bobby McFerrin ‘Don’t worry, be happy’.)

And for me this is fascinating as it puts meat onto the bones of something I’ve known for ages.

In the practice of Mindfulness Meditation (or Mindfulness Based Stress Reduction – MBSR) the state we call ‘mind-wandering’ is considered a source of much of what is wrong with people and society, it is at the core of why people become stressed, worried and depressed.

mind wander

The goal of this meditation is to calm the wandering mind, to provide people with the resources to focus, to move away from the thoughts that leads to one thought and another, to bring you back to the moment – your breathing, for example.

With time it has been shown that practitioners of MBSR have significantly reduced levels of depression and anxiety (they also tend to be happier and more creative).

And here is the link.

Meditation as part of MBSR quietens the DMN, in a similar way to taking Psilocybin.

Yes, it is easier to take a brew of magic mushrooms than spend a decade meditating, yet, one strategy is legal the other not.

Also, funnily, something I mentioned a couple of blogs ago, around the state of Flow as described by Mihaly Csikszentmihalyi, this too is a means of manipulating the network, to allow a state of calmness.

Linking-up Flow (which I think I get when blogging or walking the dog or driving the car listening to Audible) with MBSR and the Psilocybin experience is for me a revelation.

How can we adopt this to help people?

Perhaps this understanding can help when I try to support those who are in the doldrums.

Perhaps the drug companies might find a way to make magic mushrooms that can be used therapeutically.

Perhaps we can tame Flow.

flow

I am not advocating that anyone eats magic mushrooms – as of 2021 their consumption in the UK is illegal, also, like all things illegal, there is no way to judge safety or quality.

If you want to know more, find a good mycologist.

*Sentences like this always make me think of John Lennon… ‘Life is what happens when you are busy making other plans.’

**Unless you have an electric car like me #cheesysmile

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Shady Towers, Social Care, Nora and Whitey on the Moon.

The government and, in particular the NHS are masters at inventing arbitrary names, often allayed with acronyms to describe obscure pathways and processes. It is what they do best. I imagine a conversation between the regional manager for NHS Y (can’t be NHS ‘X’ as that is, unsurprisingly already a thing) and their child:

Freddy: What do you do when you are on the computer in your office?

Mummy:  I organise things.

Freddy: Are you a key worker?

Mummy: Yes, I suppose I am.

Freddy: What do you organise?

Mummy: I find ways to move patients and staff around a diminishing system to maximise output, retention and wellbeing of staff and patient care. I also invent acronyms.

Freddy: Can I watch Disney?

OK, what is this about?

Well, I want to focus on patient experience – in layman’s terms, and depending on your age and state of health, that means you, your mum or dad, brother or sister and what happens to them when they need healthcare in the UK in 2021.

During Covid (or when Covid was at its worst) (There seem to have been several ‘worsts’) the NHS developed a scheme to help support hospitals.

The idea was that when a patient did not need to remain in an acute hospital bed, they were discharged as efficiently and effectively (as quickly) as possible.

The process being:

Clinician (mostly male consultant) saying, ‘Medically Fit’ followed by feverish activity by nurses, junior doctors, therapists, pharmacists, clerks and others to get that person ‘out of the bed’

For the most, ‘out of the bed’ meant straight home, sometimes with their family or an ambulance, occasionally in the back of an Uber.

This, the bureaucrats* called ‘Scheme One’.

The aspiration at the start of Covid was that upwards of 95 (or was is 97?) per cent of patients would follow Scheme One; chest pain > heart attack > ambulance > A&E > angioplasty > Coronary Care > 4 days later, home.

Voila. It is a recipe for simplicity.

It works well so long as the ‘medical model’ holds true and patients do as they should (recover without complication from single-organ events).

When patients deviate from the furrow (the actual meaning of delirium) things can go awry, their time in hospital can be extended unnecessarily – this is called ‘length of stay’ or LoS, with extended LoS being a problem.

furrow

Some patients stay weeks, even months in hospital beds because of complex issues relating to the interplay of their health and home situation.

I have a man who has been stuck in bed too long because he has eight cats.

I understand the cats are now with the RSPCA.

I don’t know if my patient knows.

cat tail

Scheme One is fairly dull.

It is Scheme Two that is more interesting and the one where I spend much of my time.

This is when a person is deemed ‘medically fit’ (to new readers of my blog, please Google ‘almondemotion & medically fit’ for lots on the topic) and they can’t go home – perhaps because their home is uninhabitable – they are hoarders, the roof has fallen-in, the street is too dangerous, there is a sinkhole, that kind of thing, or more often, they are too frail or confused to manage even with the care that could be provided to the Scheme Oners, they pass into Scheme Two.

These folk, by and large are moved from hospital into nursing and residential homes in the locality.

The aim of all of this, the Scheme One and Two is to create more capacity in the acute hospital so they can support the newly sick – something called ‘flow’ (not the kind described by Csikszentmihalyi).

To the casual observer, this might seem OK – person (for them most, people who are old e.g. over 85 years and often have either dementia or delirium) who doesn’t need to be in hospital and can’t go home, have to go somewhere, they are sent down the pathway of Scheme Two. (Before Covid these people remained in hospital and became ‘medical outliers/bed-blockers’ – an equally fraught experience).

This enables people (difficult to ascertain whether they are people or patients, it is probably more reasonable to stick with ‘people’) to be moved into care homes and, this is where the problem starts.

You see, taking person A, let’s call her Nora Newman (made-up name), who has fallen at home, she is frail, 90 years old and struggles to hear and see, she has lots of health problems and takes 20 different tablets every day. She has accidents with her waterworks (she has urinary incontinence) and lots of other things going-on. Her daughter, Angela (also made-up) lives in Southampton, (Nora is in Durham) is trying to find out what is happening.

Nora is placed in a care home ‘Shady Towers (yes, also made-up).

Nora used to live in South Durham, Shady Towers is in the North.

This means that the GP who has been looking after Nora for the past 20 years, who knows her well, inside and out is no longer responsible for her care, it is GP 2 who is the responsible doctor for Shady Towers. This arrangement is through another NHS scheme called EHCH or, Enhancing Health in Care Homes.

Part of the complexity is that Nora’s GP doesn’t switch from GP 1 to 2 automatically – there is a period of limbo when the Shady staff are switching her across and GP 2’s admin are registering her.

Nora is in Scheme 2. GP 1, GP 2, the care home manager, Nora and Angela have no idea what Scheme Two means. There is a letter from the local Clinical Commissioning Group outlining some of this on Nora’s doorstep, yet Angela hasn’t seen that. And no one else has had the explanation of the schemes that I am describing here (GPs have been too busy managing patient demand and the complexities of PCN (Primary Care Networks), Care Home Managers too occupied trying to find staff to care for their residents (the Brexit workforce gap).

Nora falls in the care home. She is sent back to hospital. She is confused, disorientated. Prior to Freedom Day Angela couldn’t visit (Nora doesn’t have dementia, the Willy Wonka Gold Ticket to allow hospital visitors during Covid, she was just confused.)

Do you see where this is heading?

Eventually Nora is well or ‘stable’ enough to either go home or at least not remain in Shady Towers, a process of discussion between a social worker, Nora, Angela, GP 2, Care Home Manager and whoever else might be involved – perhaps a physiotherapist or mental health nurse.

As if this was not tricky enough, the social worker is living in a UK that has been diminished for the past decade by Tory Austerity. They are trying to do more with less. They are trying to do more using iPad’s to communicate with 90 year olds who struggle to see and hear, they have irate family who are still coping with the guilt of moving down-south a decade before. They still have their day job of helping people that existed before Covid and before Scheme Two was thought-up.

It’s a recipe for disaster.

People like Nora tend to be those who suffer the most.

Nora is more likely, as a consequence of all of this to be given the wrong or inappropriate medicines (GP issues), is more likely to fall (environment issues), and is more likely to die (complexity and frailty issues).

I was on a call with a high-up social worker this week, her interpretation of this was that patients should be given a choice, should be empowered, shouldn’t be moved from hospital A to Care Home B unless they are in agreement.

I think she has been in management towers for too long.

The reality is that hospitals are experiencing more pressure than ever before, the numbers of patients waiting over 12 hours on stretchers in A&E is as bad as the late 1990’s, patients (people) are staying longer, unnecessarily in hospital, readmissions are up, survival is down.

more than 12 hours in ed departments

It is not a brilliant picture.

The PM announced a rise in NI tax this week. I understand this is to offset some of the damage they have done to the NHS over the past decade. Fantastic. (And yes, Whitey is still on the moon).

The whole, the gap, the deficit or deficiency is in social care, yet, that has not been brought to the table.

I haven’t heard anyone saying we need to double the number of social workers or provide them with more support (many of whom are born and train overseas – the Brexit Gap again).

It is a perfect mess, all concocted by our government and voted into place by us. Not me. Yet, you don’t find many people saying, ‘Yes, I voted for this.’

Self-interest eventually comes-back and bites you.

Just as the gas-guzzlers of California are baking in the fires of planetary change, so too the Middle-Englanders.

I read in the Sheffield Star yesterday that ‘580 people died on the social care waiting list’ in that city alone.

social

It’s OK if it’s not you.

The irony is that more and more often, it is you. Or, me, telling my patients, sorry, the waiting lists are long, you have to wait, ‘If I send you to A&E you might wait eight hours for an ambulance and then sit outside the department for an hour before lying on another stretcher for ten hours before seeing a doctor’.

I hate to write blogs without a way-out.

Here are my thoughts:

  • Meaningfully invest in social care – more social workers and assessment officers with better support (no one realises how difficult their job can be).
  • Meaningfully invest in community care – more people like me and more nurses and therapists (and nursing and therapy and doctor support staff to work with them to increase their effectiveness and efficiency)
  • Acknowledge there is a problem/crisis in order for innovative local solutions to be considered.
  • Get rid of QoF (Quality Outcome Framework) – this is the driver of primary care payment that makes GPs spend masses of time sorting-out well people, instead of focusing on those who are unwell and in need of attention
  • Get rid of Care Home Quarantine and visitor restrictions – it’s inhumane
  • Get on and give old folk Covid boosters
  • Meaningfully address the imbalance in staffing and working across regions – people living in City A tend to have access to far more specialists than those living in town B.
  • Make people pay for social care – no dilly-dallying; if people can afford to pay for nursing and residential homes, they should, the absurdity of inheritance has to stop.
  • Stop giving things silly, arbitrary names

I appreciate this is not a fix to everything – you can’t fix everything; you can move closer to better, that is all I want.

When I take a step and it is away from better or good or kind, that’s what kills me.

*(is there anyone who know how to spell this word?)

6_WhiteyMoon-min

Israel / Sheffield / Palestine & Stone throwing

I was in Sheffield yesterday.

The city centre reminded me of Shawlands in 1984.

Run-down, with as many shops closed and shuttered as were open.

No one has said we are in a recession. The times don’t feel great. You can almost see them, like dominoes, one shop closing after another, taking more and more custom and profit and there you go, another gone.

We were in the city as my son wanted to do something with his child-trust fund, now that he has turned 18 he can get his hands on the money.

Afterwards he was scheduled for a haircut.

All of this might seem irrelevant, and, indeed, it is, I am however setting the scene.

It was around 1130 and I saw in the distance some Palestinian flags. This was accompanied by a group of people standing outside one of the out-of-business shops – I think it might have been a bank, requesting that passers-by take a leaflet and BDS.

BDS is an abbreviation for ban, divest and sanction everything to do with Israel.

A woman offered me a leaflet. I declined.

From reading previous blogs, you might have worked out, a) I have Israeli citizenship, b) I am Jewish and c) I quite like Israel.

You might also have established that a) I tend towards the Left, b) I am a humanist c) I care about people, particularly those who are disadvantaged (be they old, young, disabled or Palestinian).

This becomes a confusing Venn Diagram.

venn not to scale and likely wrong

Most people, and in particular those handing out leaflets don’t get the subtleties. They watch the news, are called to arms and want Israel to stop its actions. They call the state Apartheid, which, from my reading, is a complete failure to understand Apartheid, and an insult to everyone, the Israelis, the Palestinians and the Black and Mixed-Race South Africans who were victims of that system.

I will not go into the details and I don’t, and indeed can’t provide you with a formal analysis of Israeli, Palestinian and Middle-Eastern politics. I am not an expert in this area.

Ask me about old people and I am happy to provide an opinion.

You see, what gets me, as a Jewish, Israeli, Scotsman living in South Yorkshire is the underlying and effectively impossible to separate line between the words and actions of these protesters and those who I perceive are openly Anti-Semitic (Yes, I know about Miriam Margolyes…)

You might wonder how I came to this conclusion.

Here is my stance; not necessarily in order, but the best I can do.

  1. Israel is a democracy. (A crazy proportional representation, but a democracy – one of the few in the Middle East)
  2. The citizens of Israel, and define them as you will, although I think most would agree, we are talking Jews, Israeli Arabs (Christians and Muslims), Druze and other groups have voted for the right wing government that has led policy for the past decade (I have no idea of the political position of the current government, I believe it is still over on the right), nevertheless, right or left, the government is the government and more than many countries in the Middle East, is elected through democratic means.
  3. The Palestinians living in the West Bank and Gaza do not get to vote in the Israeli elections
  4. The West Bank, aka the Palestinian Authority has its own elections and its own Prime Minister (Mohammad Shtayyeh).
  5. The Gaza Strip, run by Hamas, is not democratic, rules by tyranny and has as its main goal the destruction of Israel.
  6. There are lots of bad things happening on Planet Earth, 2021.
  7. Some countries have better human rights records than others.
  8. If you look at an organisation’s website like Amnesty International, you will see there are abuses happening across the planet – China, North Korea, Yemen, USA, Syria, Lebanon, Myanmar, Saudi Arabia, Russia, Afghanistan, Libya, Pakistan.
  9. Have you visited a UK immigration detention centre recently?
  10. I support the right of the Palestinian people to have their own independent state, I support their right to free elections and all the other rights I have.
  11. I support the citizens of Israel (Jew, Muslim, Christian, Humanist, Agnostic, Druze, Greek Orthodox, Baha’i) to live without the existential threat of terrorism or other forms of attack.
  12. There is disproportionate reporting on the situation in Gaza and the Palestinian Authority in the news (I can only account for The Guardian, which is where I get my Crosswords).
  13. No one is calling for us to stop buying good from China, USA, Pakistan or Russia.
  14. If indeed people did BDS from Israel, they would cripple the international economy given that Israeli tech – software, hardware, medical and other technical innovation is found across the whole spectrum of gadgetry we and our systems utilise – phones, planes, computers, TVs, vaccines, etc.

freedom in the world report 2010 to 2015

I think this list is long enough.

Yesterday’s blog was all about apologies. Sorry.

Sorry if I have mis-represented, not aligned the argument well.

My point is this.

Before you throw stones – literal and metaphorical, look at yourself. Are you free from blame? Are the hands of your national aspirations so pure as to place yourself in a position to roll-out accusations of abuse directed at others?

Before you throw stones, do you have all the facts?

Before you throw stones are you merely taking sides to ease your own conscience?

This might sound like I am saying do nothing.

Accept the status quo and find something else to protest.

Meditate, tend your garden, stop eating animal products.

I am not telling anyone what to do.

I am just suggesting that change, as with all these things comes from within.

This blog will not alter anything and I do hope it will not provoke people to call me out for being a hater of Palestinians, for I am not.

Just think how your actions are construed.

There are 8.8 million people living in Israel.

That is 0.11% of the world population.

Around 20 per cent of children in the UK’s 68 million population are living in poverty.

Consider the involvement of Russia and China in perpetuating the Syrian crisis.

Are you banning Chinese goods?

The Jews, in case you hadn’t noticed, have had a hard time the past two thousand years.

We have had enough boycotts in the past. Enough sanction and banning.

Support the Palestinians, but carry in your sights the actual perpetrators of the inequality and poverty, those with a vested interest in the status quo – specifically, and, for the most, the American Right followed closely by rich people everywhere else.

If you want to listen to a Podcast about all things Israel and Palestine, Darryl Cooper has done a great job; you can listen here.

miriam

Sorry

I am sorry I was late.

I am sorry I did not wash the dishes.

I am sorry I did not prepare the report for the meeting.

 

Sorry I am early.

Sorry I ate the last pomegranate

Sorry for not staying in touch.

 

Sorry I let the dog out.

 

Sorry for the letter I sent

Or the email

Or the communication that was taken one way and meant another

 

Sorry for not washing my hands

For not using the hand gel

For attending the party.

 

Sorry for forgetting your birthday

and

Sorry for not sending a card

 

Sorry for the delay in my answering the phone

And, not getting back to you,

You see, I’ve been busy.

 

Sorry for the mistakes I have made

And will make.

 

Sorry for the pollution created

By my car

By my meat consumption

and my use of technology

 

Sorry for not listening

For not hearing

For not paying attention.

 

Sorry for missing you off the list

For allowing my dog to chew the invoice,

The receipt.

The sock.

 

Your shoes are destroyed

As is my pullover

Sorry, it was, the pup.

 

Sorry I have changed my mind

From planning for A, then B then C

And, apologies for my capriciousness.

 

Sorry I cannot attend the meeting

Or the appointment

I can’t make the deadline

Or the target.

 

Sorry I led you to believe one thing

When I intended another.

 

Sorry what I taught you is not right,

Indeed is the opposite of the truth.

 

Sorry I have prescribed you the penicillin when you are allergic.

Sorry I missed the critical measurement on your blood results.

Sorry for referring you to the cancer specialist too late.

 

Sorry for sending you to hospital, when home was best.

Sorry for not sending you to hospital, when you should have gone-in.

Sorry for the time the ambulance takes to take or bring you back.

 

Sorry for the discomfort

The awkwardness of my expression

The momentary lapse in decorum.

 

Sorry, I thought you were someone else.

 

Sorry, wrong address.

Wrong, number.

 

Sorry I didn’t catch you when you were in, I’ll call again later.

 

Sorry for thinking you were this when you are that.

 

Sorry for the mis-gender, mis-identity, mis-translation.

 

Sorry for being me and not the person you had expected.

 

Sorry for my shape, my form.

 

Sorry, I should have remembered, I shouldn’t have forgotten.

 

Sorry I didn’t take more photos

Or video film

Of my mum or dad

Or children when they were young.

 

Sorry I didn’t savour the moment,

Appreciate what I had.

Sorry for the length of these sorrows.

 

Sorry for the damage to your book,

To the broken spine,

The dog-ear,

the coffee stain.

 

Sorry for my heavy-handedness

The tightness of the blood pressure cuff

The scratch of the needle.

 

Sorry for the preamble.

 

Sorry for bumping your car,

Sorry for not indicating,

For the wrong flavour or ingredient.

 

Sorry, I don’t have any money on me at the moment.

Sorry, I’m in a hurry, a rush, can’t stop.

 

Sorry, sorry, sorry.

 

I apologise and wish things were different,

Had been different,

Had been otherwise.

 

But.

That is the way they are.

That is it.

That is the reality.

There is no other, no alternative, no switch.

 

There is no point in my offering you more apologies.

What is done is done.

The end is the end.

And no go o’er.

nina r aide pomegranate

 

 

Balance

I have been watching a somewhat cooky film on Amazon Prime Video called, The Reality of Truth.

In it, tech millionaire Mike ‘Zappy’ Zapolin and some of his rich pals undertake a journey of psychedelic discovery, first travelling to Costa Rica then to Machu Pichu for some Ayahuasca.

You get the idea, lots of self-realisation, Transcendental Meditation, Deepak Chopra, and that kind of thing.

Anyway, one of the ‘psychonauts’ described a drug-induced experience where he somehow left his body and travelled outside of earth beyond the Milky Way and far out into space to the edge of the Cosmos (does the Cosmos have an edge?) – well, when he looked down, he had the notion that everything is in balance.

Some good here is counterbalanced by bad there, black and white, up and down, Yin and Yang, the old Confucian logic.

And yes, this makes sense.

Now, balance is a funny thing, and it came to me vividly yesterday afternoon just after we had taken our puppy for some off-lead practice at a nearby country park.

Anne, that is, my partner and I were checking out some little climbing frames. The type toddlers can march up and down, first holding your hand, then as they grow with greater confidence all on their own.

Anne had a go.

I looked on.

What I saw and what I thought (to myself) was, ‘Gosh, she is taking ages, she is so slow, so unsteady.’

And yes, I went on after her and fell-off.

What does that teach us?

Well, first, people can be overconfident in their estimation of their abilities and second, as we age our balance, first improves – toddler to little child, then from somewhere in your 20’s it declines.

Pretty much as everything else falls-off.

Sure, you can probably find some 90-year-old gymnasts out there who are able to walk on their hands blindfolded, but, for the majority, staying upright is tricky.

We underestimate how difficult it is not to fall, we presume we are better at balance than we truly are.

And, what happens?

We fall over.

I have lost count of the number of old men and women who had overestimated their abilities when replacing lightbulbs or dusting high-up corners of living rooms, only to topple and break their wrists and hips.

What is the corollary? The lesson?

Well, it is, as you age you can no longer do some of the things you used to.

That doesn’t mean you can’t do anything, just, that certain activities become more difficult than others.

When I was 15, I remember cycling about town without holding the handlebars of my bike – I had a special power that enabled me to glide around corners by shifting my centre of gravity.

I remember trying this a few years ago and it did not go well.

Perhaps I’ve had too many knocks on the head.

And what is the point of this reflection?

Well, my first proposal is that people as they age should realise how bad their balance is or has become and secondly, they should work on it.

You see, balance, like any muscle, skill or talent can be developed.

The neural pathways that maintain posture and balance can be improved with repetition.

Do some Yoga or Tai Chi.

Brush your teeth standing on one leg.

Work on it.

Don’t climb a ladder and discover your weaknesses.

If you read this, you might also like this.

toddling

 

 

The Twa Dogs (Dugs)

I’ve got a problem.

A couple of months ago I bought two puppies – originally nameless they became Blake (Scrappy) and Percy, then Percy became Wilbur.

pups

They joined the household of Stella, our two-year-old Pointer-Springer Spaniel cross.

So far so good.

Very cute.

Cocker Spaniels.

They’ve both had their tails docked which is something I’ll write about one day & don’t feel in the mood to discuss; I hope that is ok. And, that isn’t really the problem.

You see, we semi-rescued Stella.

We bought her in one of the lockdown windows shortly after my dog Maisie died of cancer.

We don’t know much about Stella’s past although we suspect she might have come from a puppy farm (she was about a year old when we got her), she was, to put it mildly, a little damaged.

For the first two or three weeks after she came home I had to physically drag her out of her crate to let her pee or poo – she was terrified.

She was silent, not uttering a whimper.

She would hide.

Over time and with lots of work she has come into herself.

She still has some issues – she barks at my partner and daughter whenever they approach (very loudly – she eventually found her voice), she can’t be let off the lead outside as she tends to run away and she has strong jaws.

The jaws are the problem.

I’ll explain in a moment.

You might have wondered about the pup’s names.

Well, Blake is named after William the poet and Percy after the other great Romantic. My son Rami studied A-level English and loved the Romantics. I sometimes call Blake ‘Scrappy’ as to me he has more in common with Scooby’s nephew than a brooding late-18th century poet.

blake

Blake (Scrappy)

I gave Percy to my sister as she had been wanting a dog for ages and when the two siblings became available this seemed a fantastic opportunity. My sister lives in Edinburgh so the boys won’t see much of each other, although we exchange photos.

wilbur

Wilbur

My sister’s son named Percy, ‘Wilbur’ and so the story goes.

Wilbur lives closer to the seaside than Blake and possibly has the better deal.

Anyone who has had a puppy knows that they like to chew.

They are essentially tail-wagging, peeing and pooing chew machines.

And this is the problem.

You see, I am sure when Stella (named after Stella from A Streetcar Named Desire and Stella Artois from Kensuke’s Kingdom (we like books in our household)) was a pup she didn’t have any toys or chews.

Now the pups’ chews (we have bought lots of chews – plastic bones and stuffed toys are the favourites), Stella has discovered a new world.

stella

Stella – chew bandit

The problem we have is that Stella is an adult dog and her jaws are mighty and powerful and very quickly shred the soft-toys and gobble Nylabones. (Real bones don’t work as they bring out an aggressive streak in her that is otherwise sublimated.)

Before the pups, if I bought Stella a chew she would ignore it. Even a stuffed rat called ‘Rodney’ lay unloved by the side.

She has learned to covet the toys (She has also learned from the pups how to run after and retrieve a ball).

And her carnassials destroy the toys.

Poor Rodney the rat lasted a few hours before his tail and ears were removed, our stoat a matter of minutes.

stoat1

Stoat just before his denouement

Stella steals toys off Blake, she is only interested in those Blake wants.

It is like two toddlers constantly vying for attention.

Fortunately neither of them are bothered by Yoda our tortoise.

yoda

I suspect in time Blake will outgrow the chews or at least the toys, or he will be big enough to grab them back off Stella. Who knows, they might fight; hopefully not – for the moment when Stella robs the Blake-toy, he cowers.

Dogs.

Joy.

They provide a window into the human soul.

twa dogs

The goodbye

stella relaxed

To stop or not? (Jerzy Kosinski, Oliver Sacks & other ideas)

This a question that has arisen directly out of the mess of Covid.

Picture a 98-year-old Yorkshire woman.

She is frail, grey haired as you might expect.

She has a warm smile and sharp blue eyes.

In the three years I have known her, I have never seen here anywhere except sitting in the chair beside her bed in the local care home I visit.

She always has a puzzled then warm smile when I walk in the room.

Beyond the scene is the context.

Eight or nine years ago the doctor who was at that time responsible for her care saw her walking into the dining room (she has lived in the home for a long time).

He considered her gait unusual, made some assessments and diagnosed Parkinson’s disease.

This is a condition, most common in older people where there is a deterioration in the level of dopamine in the brain.

If you watch the Robin Williams / Oliver Sacks movie/book Awakenings you will see what dopamine can and cannot do to the brain.

Awakenings 2

I will not go into details as I am no expert, and this isn’t a story of neurodegeneration.

There is one fundamental however and that relates to this mysterious disease (which it shares with several other neurological or brain affecting conditions), that is, it is tricky to diagnose.

If you have cancer, at least, for the most (although not always (story for another day)) a biopsy concludes the diagnosis – a sliver of liver, a nodule of gland or other tissue combined with advanced biomolecular techniques and it is possible to say with a high degree of confidence, ‘You have melanoma.’

This is not the situation for Parkinson’s disease (dementia which is much more common is equally hard) – consequently patients receive what is called a ‘clinical diagnosis’ – this is when a clever clinician, for the most a doctor or other specialist, performs a number of indirect tests and assessments and arrives at a diagnosis.

A more common example is pneumonia.

You are short of breath, you have a nasty cough, feel awful and your temperature is high. The doctor listens to your chest, hears what is called ‘bronchial breathing’, says you have pneumonia, gives you antibiotics, advises that you will feel terrible for a couple of weeks and to get in touch if you get any worse and exists stage left.

This is the way doctors have functioned for hundreds if not thousands of years.

Since Mr Roentgen, we have been able to check the diagnosis with x-rays, and pneumonia is only present when there are changes on the black and white image – we call this consolidation.

cxr

There are other ways to diagnose pneumonia – this is the most common and more accurate than a piece of plastic connected to a person’s ears.

cheesy stock photo

In many instances of the clinical diagnosis, if you arrange an x-ray, the film will be clear. This means, the diagnosis is probably ‘chest infection’ – a moot point perhaps, and you still feel bad, but subtly different in management and prognosis (chest infections are often caused by viruses, the prognosis is mostly much better than pneumonia.)

normal chest xray

Here what I am trying to demonstrate is the inaccuracy that accompanies the everyday actions of doctors (when I say doctors, I am talking 21st century, in other words, I mean clinicians – this is shorthand for nurses, therapists, pharmacists and so on). Y’ken?

Many people assume when a doctor says, ‘You have X’ they indeed have ‘X’ – in some cases this is easy to establish – for example if you have an x-ray machine handy, although there are situations where even what looks like something is not – the x-ray might look like pneumonia, yet the diagnosis might be cancer or some other respiratory condition.

It can be complicated.

Things are not always what they seem.

Let’s get back to my old lady.

Several years ago my former colleague saw her shuffling, diagnosed Parkinson’s disease and started her on treatment.

…. time passes….

I came on the scene and from the first, when I met her and encountered her warm smile, her engaging expression and general affect, I said to myself, ‘This woman doesn’t have Parkinson’s disease.’

(One feature of the condition called hypomimia, or if you like, expressionlessness is very common in Parkinson’s, my patient had what you might call normo-mimia.)

Drawing_of_face_of_parkinsons_disease_patient_showing_hypomimia

This was around two years ago.

I discussed the situation with her carer and her daughter (my patient who also has dementia was unable to grasp the ins and outs of my plans), and we agreed, ‘She probably doesn’t have Parkinson’s disease,’ and, I started weaning her medicine.

She was taking the tablets five times a day.

I stopped the evening dose.

Nothing happened.

I stopped the mid-morning dose.

Nothing happened.

Then came Covid.

And yes, things fell apart.

I have written before, about this care home in that we did fantastically well to avoid Covid except for one outbreak on one unit which was of course devastating.

My patient dodged the Covid bullet.

Yet, I was pulled away to do other things, I became distracted, the gradual withdrawal of a drug in this woman had not been my sole focus and, as happens more commonly, the carers who tend to keep me right, ‘Dr Rod, what about..?’ were distracted too.

And that brings me to my starting point.

To stop or not?

This was two months ago.

I was reviewing my patient and noticed she was still on the, what I call, ‘dodgy drug’ (this being a medicine that in certain circumstances is great, but if inappropriately prescribed or misused can cause harm) (Google the side-effects of Madopar, a common medicine used in Parkinson’s disease if you want to see what I mean).

And then the question.

I mean, she is 98 after all.

She is doing quite well even with her three times a day dodgy drug.

Let her be? De-prescribe (the 21st century term for stopping unnecessary drugs, particularly in older people) (we had by then moved beyond de-diagnosis which is a term I believe I invented).

There tends to be a medical aphorism, ‘If it isn’t broken, don’t try to fix it,’ yet, my patient, her medicines, you might have guessed, I am the type of guy to scratch an itch.

We decided to continue our weaning.

She seems brighter.

She has been eating more, sleeping better.

Perhaps coincidence, perhaps not having a toxic drug flooding her brain.

If you are lucky enough to have read the Jerzy Kosinski book, ‘Being There’ (also movie with same name starring Peter Sellers), you see the reality that the protagonist, named Chauncey Gardiner brought to the narrative.

MW-EM967_seller_20160518135123_ZH

Great gardeners you see are tenderers*, they are meddlers, they notice the solitary diseased or sickening leaf and act, they are sensitive, and so too with the clinicians, they tread cautiously, they check and check again, they corroborate before deciding on action.

Think once, think twice.

oliver

*Makes me realise, when tending to a patient, my action, essentially offering tenderness, is the key.

You get what you pay for. (this is not a happy one)

03_Douglas Adams

I was not brought-up on this mantra.

I remember as a boy, lost amongst the shiny metal shelves of What Every Woman Wants off of Argyle Street .

There, as with the modern-day thrift stores that have taken-over our post-Tory post-Covid city centres, the bargains were waiting.

Sure, they were not worth the 5p you’d spend, but there was something satisfying with the realisation you could buy an over-sized Duran-Duran T-Shirt for £1.

All of that is a long time ago.

Long ago and someplace else.

We are in pandemic UK.

The economics are those of health and social care.

The cost is that of how long you must wait for an ambulance to take you to A&E.

The other day I admitted an old woman; the records document her heart rate as somewhere between 160 and 200 beats per minute. (For non-medical readers, that is considered fast). She was rushed to the hospital. It took 16 hours before the first doctor assessed her.

Today, if your hip is bad, worn and arthritic, if you are lucky, you might get a replacement joint in two years, probably longer by the time you see your GP and you jump through various hoops of assessment and review.

If you have the money, you can fast-track private.

Most of us are not so fortunate.

When things are bad, when the wait for the doctor or the nurse or social worker is several times longer than ideal, I want to tell people, ‘You get what you vote for,’ this meaning, after so many years of Tory government, with public service asset stripping the modus operandi of those running the country (and don’t start me on the lies and deceptions), what do you expect?

You spend peanuts, you get monkeys, I can remember an old Maltese fellow I used to know saying.

Where else can we go?

You stretch the elastic; you pull it and pull and pull and eventually it snaps.

I know that Alan Paton was talking about something else when he wrote ‘Cry the beloved country’ yet, I can’t help feeling we are amid an equivalent nightmare. Note, I don’t say, ‘Walking towards,’ no, we are in it.

No, not the climate, not the uncollected bins, the zero hours, no, not the Shitty White Men travelling on purpose-built spaceships that fly over the filth and poverty of a world falling apart, all of it together.

The amalgam.

The gum or Gestalt of autophagia, we eat ourselves, without realising that each mouthful leads to our destruction. The temporary nourishment a deception. A nonsense.

Our hospitals hold crisis meetings. They aspire to manipulate pathways and systems to increase efficiency, all of which has the opposite effect of slowing us down, increasing our error rate, trebling dissatisfaction and wearing thin the fabric of the spirit that maintains us.

And the absurdity, the madness, like Douglas Adams’ Brontitall. We have riches.

A person can spend 20 weeks on intensive care receiving the most space-age therapy and support imaginable, yet they return home and the carers who rush to provide their evening meal have little sense of person-centredness. What Matters to Me is squeezed, it is transmogrified into time slots and rota allocation.

And this, a pean to what?

No, I am not ready to stop.

Yes, I am tired.

Everyone working in health or social care today is tired.

They are running on the fumes of the fumes.

The odometer says zero.

And, a trip to WEWW’s without a penny in your pocket doesn’t buy you a thing.

WEWbag

Chaos theory. Calamity in action.

The image that has spoken to me the most in the past few days has been that of an empty refuse skip sailing down a village street in an inundated German village.

flood

Floods in the north of the Europe have caused chaos.

The clip I saw on Twitter carried the comment, ‘It’s like Earth is trying to tell us something.’

Mother Earth.

Let’s call her Gaia, is speaking.

She is screaming.

Saturn_Devouring_His_Son

(OK… Saturn is not a ‘she’)

As in labour. The walls quake with the tremolo of her call.

And here, that is, the UK, we have Covid.

We have a donkey leading asses.

The misdirected guided by the uninformed.

Fashla.

Fadicha.

As they say.

And today, I hold my head in my hands as I estimate the enormity of the threat.

The 24-year-old lying intubated on the intensive care unit

of most hospitals in the country,

The wards starting to seethe.

The fear.

amy

I saw an image of Amy Winehouse today and

Thought,

How lucky, she never knew this blight.

It is all an absurdity of course.

We scrabble,

We try our best to do and undo the chaos.

Nothing is really knowable.

medusa

Babyteeth

Have you watched Babyteeth?

2019 Movie,

Available on Netflix now.

It’s a comedy,

Although I don’t remember laughing.

It is the story of Milla a 16-year-old free-spirit who is dying of cancer. She teams-up with Moses a struggling drug user.

Her dad’s a psychiatrist, her mum, a concert pianist, is falling to pieces.

It is set in Australia, somewhere near the sea.

The scenes are acts, making It feel like a play.

The soundtrack which my daughter downloaded yesterday (watched it with her) is brilliant.

Vibrant, life-affirming music.

Rotten Tomatoes gives it a 93% which means my son and my brother who have high movie thresholds would approve.

Please watch.

Then listen.

PS What I’d like to know, given there are so many rubbish films out there, why did no one tell me about this before?

Why this is especially precious to me?

Well, until a couple of months ago my daughter was convinced she still had several babyteeth.

A visit to the dentist dispelled this myth.

We are all growing, ageing, slowing-down and deteriorating.

An ideal film for a geriatrician.

babyteeth-tfeat-uproxx

If I told you I’m good, you would probably say I’m boasting & Teamworking

There is a famous Bruce Lee Quote from one of his interviews in the year before he died.

The TV talk-show host asked Bruce, ‘Some people say you are amazing at martial arts, Bruce, just how good are you?’ (Or word to that effect).

Bruce’s legendary response, ‘If I tell you I’m good, probably you will say I’m boasting. But if I tell you I’m not good, you’ll know I’m lying,’ encapsulates some elements of his personality, his confidence, competence and skill.

Yes, Bruce was that good.

Now, I am just a doctor.

In medicine we are advised to be as good as the average.

Indeed, there is a principle enshrined in law that the way to judge as doctor is on the basis of what he peers would have done in a similar situation. It is called the Bolam Principle.

I know most people think and would certainly want their doctor to be better than average, and like the ‘better than average’ (Illusionary superiority) heuristic the average person or doctor thinks or believes they are better than average that whatever they do (diagnose, cook, drive, tooth-brush), the reality is that most of us are average, sitting bang in the centre of the normal distribution.

standard-normal-distribution

Where am I going with this and what does it have to do with team-working?

Well, I work in several teams.

Indeed, you could say that teams are the basis of most of the successes of human society – we perhaps say that Steve Jobs was why the iPhone is successful or Elon Musk the Tesla, it is really, the teams that are work with and support them who are outstanding. For the most these guys are just loudmouths and good self-promoters.

I work with some amazing teams.

I don’t know if I am considered the Steve Jobs of nursing homes, certainly not, yet, some of the work I have supported has been outstanding.

I want to take one example.

For the past two years I, as part of my role working at Manor Field Surgery in Maltby, Rotherham, South Yorkshire (details provided for international readers) have been visiting the 70-bed nursing and residential home, Layden Court once a week throughout this time.

Over the first wave of Covid I went video but since then it has all been face-to-face.

As I mentioned above, if you asked me if I or the team were doing a good job, my answer would be, ‘Certainly!’ This, you might call it, is the psychologically healthy way to respond.

Yet, the only way to know how good good is, it through measurement.

We in health and social care are not very good measurers.

We tend to measure when things go wrong – falls, complaints, incidents.

And, for all these are only a fraction of the goings-on, they are the standards by which we are judged.

I haven’t measured the rates of falls in Layden Court since I have been attending although I could probably get hold of this data if I had the time to do so.

I’d like to think fewer people are falling.

Having said this, a reduction in falls (one of the single biggest healthcare associated harms) is important, it is not the end of the story.

You can stop people falling by doping-them up so much they can’t move, or like Singapore or Holland, tying people to beds and chairs would stop falls, yet in the UK we would see that as unecessary restraint and an infringement of  human rights (the evidence behind restraint is that it doesn’t work, in that it might prevent falls but the harms are so great the people tend to experience other negative events – dehydration, malnutrition, depression, etc.)

I am getting off topic.

You see, a year or so ago I was interested in the numbers of 999 calls from the home.

I felt, if I could show we were having fewer of these, I could then demonstrate the work I was doing was avoiding people (residents/patients) getting into situations where the nurses/carers had to call for an emergency response.

I tried contacting some colleagues in Yorkshire Ambulance Service (YAS) without success, I even submitted my first and only Freedom of Information request to the organisation. This got me some data but not what I wanted and took so long and so many emails that I gave-up.

It was only six months ago when YAS appointed a team to support avoidance of unnecessary admissions from care homes that I was able to ask for and receive the data.

It came in two forms which I will show you.

The first has demonstrated that one of the teams I work with has provided phenomenal input and support to care homes across Rotherham.

999 syb

The data indicates, if you live in a care home in two other parts of South Yorkshire which are of an equivalent population, you are significantly more likely to have an ambulance called to you and consequently be taken to hospital, and, given what we know about the experiences of older people in A&E’s anywhere in the world, you are also more likely to be admitted to hospital and receive all the interventions (and potential harms) associated (particularly when medical care is provided to people who do not need to be in hospital but are perceived by certain doctors to require hospitalisation). (Rotherham is the red line).

The second graph below, is, you might call it my personal graph.

It indicates the 999 calls to the care home I have supported since starting there in June 2019 (I have cut this graph so that it is equivalent to the time-line above).

999 calls december 2019 to feb 2021

There has been a big drop in calls and the same applies to these individuals as to those living across the town.

Now, the point.

Is Rod really great?

No.

Sure, I believe I am better than average (healthy ego), yet, I am not responsible for this work.

I have played a small part in the overall Rotherham Care Home work and a little bit bigger part in the Maltby Care Home work, yet, no, I am not responsible.

It is the team.

The team are what has made the difference.

The way I have worked with the teams of staff – managers, healthcare assistants, cleaners, nurses, therapists, residents and families.

Collectively we have improved things. (And we will continue to improve!)

Take any of us out of the equation and the results will not be the same, they will likely be worse.

This is part of the reason it is harmful to say he or she or they are great.

It is very often difficult to define who they are.

And so too when things are not so good.

If quality starts to fail, you could call ‘everyone’ out for failing, report the lot to the ombudsman and so on.

This sometimes happens. Often it is the result of miscommunication, misunderstanding and frequently in individual cases grief or guilt.

The system response to tarnish the whole team can however be detrimental to that team and the people they support.

Sure, you can’t let bad things go unreviewed, you can’t let bad practice pass, yet, tarnishing everyone can be ineffective.

How have I arrived here from Bruce Lee in a 1970’s Hong Kong TV studio?

Most of us want the best.

We want to be associated with the best – the best team, country, organisation.

Others don’t really care.

Some see the whole of the moon.

Others Brigadoon.

I’ll leave it there.

bruce and family

Occupational hazard – emotional blunting.

My dog Stella was poorly this week.

She was and she wasn’t.

Poorly has many definitions.

It can mean a cold, it can mean an upset stomach or migraine.

Stella had an anaphylactoid reaction.

I have called it this, rather than the more commonly discussed anaphylaxis..

The subtle difference between the two will mean little to most.

The former, anaphylactoid, tends to be less severe. Sure, when it happens, people can look awful, and my poor dog didn’t look great – see below.

Anaphylactoid is an allergic reaction that most commonly appears as angio-oedema, that is swelling of the face – the lips, eyes and tongue.

For the most, this type of reaction although frightening and very uncomfortable is just that, it tends to settle with anti-histamines and avoiding whatever set you off in the first place.

Some medicines, specifically ace-inhibitors are known culprits.

Only very rarely does the swelling become so severe that the person affected is in trouble, that tends to be when the tongue or throat is so swollen they struggle to breath and, yes, that is a problem.

Before talking about my emotions – this is a blog centred around those things, I’ll touch on anaphylaxis.

This is the big bad brother of allergy.

It is when a person’s body is exposed to a specific allergen (food, pollen, bee sting, for example) that leads to the release of histamine and other horrible chemicals into the blood stream and you have what is called a systemic reaction, in that your whole body is affected, you can’t breathe, your blood pressure drops, without treatment people not infrequently die as a consequence.

(As an aside, it is one of the most satisfying conditions to treat, an injection with adrenaline tends to take someone from near-death to feeling fine in around 20 minutes.)

Anyway, back to my dog.

We had just finished dinner and Anne commented that Stella’s face was swollen.

I looked across and she did appear odd.

‘She’s probably holding something in her mouth,’ I said – since the arrival of pup, she has taken to hoarding all sorts of toys and chews in her mouth so the pup can’t get them.

IMG_5081

By the time I caught Stella and had a feel of her mouth I agreed, ‘Yes, it is swollen.’

It was at this point that my emotions went awry.

I self-diagnosed anaphylactoid (she appeared otherwise well), yet my son, whose emotions are fairly normal became anxious. ‘We should call or take her to the vet.’

IMG_5079 2

It was half past seven on Thursday night. I was looking forward to ‘Pet-Hospital Puppy Special’ on the TV.

I said not to worry, she will be fine.

Stella’s face continued to swell. Her eyes became puffy.

‘I think we should take her to the vet,’ repeated my son.

‘She’s fine, it will settle.’

‘You’re a doctor, not a vet!’ exclaimed my son.

‘It’s just an allergy.’

By this time I could tell my son was getting frustrated. When poor Stella, lying by my side on the settee tried to bark only to make a plaintive yelp did I start to become concerned.

‘Maybe dog allergies are different,’ I thought to myself.

By this time I had already Googled ‘Angioedema in dogs’

Stella was struggling to stand and my son had given-up on me, and left to request  from his mum that we do something, I rang the on-call vet.

I was getting worried.

Anne appeared moments later with some Benadryl mixed-in with doggie peanut butter.

The on-call vet was 25 minutes away in the car.

We administered the antihistamine and drove to the vet.

By the time we had arrived the swelling had started to settle.

The vet did all the things vets do.

Checked her over, charged us £170 pounds.

She was fine the next day.

What I found interesting?

Well, if I had happened to watch Noel’s Puppy Hospital I am almost 100% certain I would have seen people in states of distress and upset far more profound than mine. There are always tears, weeping, sorrow, often for dogs or animals that are far less unwell than Stella.

in bits

Even afterwards reflecting on the situation with Anne, we agreed that we had remained inappropriately calm throughout.

Sure, freaking-out never helped anyone and, back in the day when I used to lead cardiac arrests in the hospital I was usually calm and methodical.

Yet there is something odd or unsettling about my lack of emotional expression.

Sure, I love my dog.

I felt quite worried and upset, particularly at the thought she was becoming very unwell due to my tardiness at seeking help, but more, I think of others, behaving as you might say, like ‘normal human beings’ and I worry about myself.

My son was very upset, that to me was a normal human response.

To me and, probably Anne, we encounter so much stress and distress in our working lives we have to some extent become inured.

We see a problem and look to a rapid fix.

The NHS calls for rapid fixes.

The vet took eight minutes to tell me Stella was fine.

Were Stella a human and I was her doctor I would have conveyed the information in two minutes and moved-on to the next patient.

Sure, in many situations, animals receive better care than humans in the UK.

The NHS is currently, because of post-Covid and Covid pressures, melting.

Demand has never been higher, the waiting lists never longer.

A human wanting to see a doctor and being reviewed withing 30 minutes in the UK is unusual; sure, for anaphylaxis, the NHS tends to still be OK although I am sure it would have taken longer, by the time an ambulance might have arrived at the house; the paramedic may even have administered adrenaline which is not the right treatment of angio-oedema – the two conditions are often miss-diagnosed. (Adrenaline works for angio-oedema, it just makes you feel like you are going to die as the chemical rushes a panic attack through your brain.)

The reflection?

Am I more robot than human?

To what extent has being a doctor detached me from the gamut of human emotion? Is it just me – reserved and introverted, preferring to spill my emotions at 3 in the morning on this blog?

Who knows.

I still feel human.

Mostly.

IMG_3738

It’s not all about falling over

My colleague and I had lightbulb moments today.

You can define such an event as when you realise or think about something you had never thought about before.

Ping.

One of those instances that over time becomes part of how you see the world.

OK – it wasn’t the Four-Hour Body or a similar time or work saving device, it was, I guess, potentially more significant.

If you think about it, when our children are young we take them swimming. Mostly because it is fun, splashing in water is great and eventually when adequately skilled you can swim in the sea or ponds, if that is your thing.

Another aspect of swimming is that it can help save you from drowning.

It’s an ability that is seldom if ever utilised (saving yourself from drowning) but an important life-skill nevertheless.

What has this all to do with falling over?

Well, it is the skill of getting up from the floor if you have fallen.

That was how Leon Wormley, exercise specialist and director of Functional Fitness in Rotherham, a company which supports those who have fallen to maintain and regain independence described one of the core elements of his falls-reduction programme.

You don’t really want to learn that you don’t know how to get off the floor at two on a cold November morning.

We have a problem in that only a tiny minority of people who fall or who are at risk of falling attend his classes – Covid in particular has interrupted exercise in general and face-to-face classes in particular (same with cardiac and respiratory rehabilitation – crucial components of wellbeing for people living with heart and lung disease).

Anyway.

Lightbulb.

If you fell, and that is to say, hopefully you won’t (although a third of those over 65 fall each year, and the older you get the more frequently you fall), could you get yourself up again if no one was available to help? If your mobile was in the other room? If you were starkers in the shower?

I’m in my late 40’s and I was down on the floor last week playing with my puppy. I was able to get up relatively easily, although with more struggle than when I was 15. (When I could spring cat-like to my feet).

As we age, as each decade passes, our muscles weaken – some say our strength ebbs by 10 per cent every 10 years.

In Japan even very old people are used to getting down on the tatami for tea.

In the UK the floor is unfamiliar territory except perhaps following a toppling.

Get to know the floor.

If you can’t or won’t or are too worried you will not be able to get up again, check out Leon’s team – link at the end of the blog.

Freda, would you have managed?

Leon’s site – https://www.opexfit.com/blog/what-is-functional-fitnesshttps://www.functionalfitnesstrx.co.uk/

swimmer

Mystical motor forest

When I was a boy, enquiring about The Zohar, the mystical book of Kabbalah, I was warned not to venture too far, it was compared to a forest, deep and dark.

You go too far, you will lose your way and never return.

It was risking a step into madness.

Haruki Murakami has a similar theme in some of his novels, the hazards of an odyssey.

I only partially heeded the rabbi’s warnings and leafed through the leather-bound tomes.

None of it ever made sense.

I guess the trees were too closely packed, or, I never found the entrance.

This morning’s blog was about my struggles with cars.

All I want is to get from A to B, from nursing home A to B in relative comfort; I like to listen to podcasts and audiobooks. Satnav is important.

Fin.

I have fallen into a forest of fuel type, ignition, transition, hire-purchase and rental, automatic and manual, Korean, Chinese and Japanese manufacture, colours of the rainbow.

Modern-man tends to chop-down the trees.

That is one way of removing the mystery.

Or the risk.

I’ve never been much of a tree-chopper.

shimmel zohar

Cars, Communism and Consumerism

I have three months left with my current car.

Some readers may have seen by travelling around in my red Mini.

I have had three Minis over the past ten years.

For the most I have enjoyed these cars although recently when I discovered I had achieved a state of negative equity I decided enough was enough.

When I say negative equity, something I had only though related to houses, I understand the payment scheme I have been using has left me owing more than my car is worth. Or, something along those lines. You see, I was thinking of going for a fourth Mini when the garage revealed to me my financial state.

I was a little annoyed as I am sure when they sold me my current car no one mentioned anything about equity and I only really bought it because my the manual handbrake on my last car gave-way (with child inside on a steep incline) and it was too small to accommodate my son’s bass guitar.

Anyway, less of that.

I am looking for a new car.

And, it’s a minefield.

From what I can tell, you can buy petrol, diesel, electric and two types of hybrid.

There is something called a hydrogen car which I only discovered yesterday although those don’t look like they are going to become mainstream.

And here is my dilemma.

I don’t think diesel is a goer. For all they are good for miles to the gallon, they are apparently the worst for the environment. Noisy too.

The bad-old-days.

So, petrol, electric or one of the two types of hybrid.

You might be wondering about the Communism in the title?

Well, I was I think 15 at the time, at the height of my idealism, when I remember expressing to my big brother that I couldn’t see the point in all the choice in the shops.

‘Why so many types of coffee, biscuit or cereal,’ I asked, and this, somewhere in the late 80’s when there actually not that many types of coffee, biscuit or cereal on the supermarket shelves.

‘Are you some sort of Communist?’ He asked.

I filed-away the question which has left me pondering ever since.

In many respects I can’t be bothered with choice. I seem to be getting worse the older I get.

I know Obama and Einstein are two examples of people who had their thoughts so much on other things that varying selection of shirt or tie was not on their cognitive list.

Obama Style

Recently I have resorted to online ordering jeans and shirts based on the sizes of old designs; saves going to the shops and I know they fit.

I guess this is a little like the Mini situation.

Please don’t think me boring, although I realise that is what I am.

My dad, for his 40-odd working career had Cheddar Cheese sandwiches every day.

He was a man of unwavering taste.

Choice is one of those things that when present I can’t be bothered-with, but taken away becomes a big-thing.

I don’t want to delve too deeply into my psyche here, but take me to a restaurant and I don’t really care what I get.

I know part of this is a neurological process; it is the rule of heuristics. Essentially, in-build cognitive tracks that allow us to act without thinking or without dedicating too much mental energy.

A way to conserve energy.

Bruce Lee would have been pleased.

Getting back to cars.

Petrol, seems the worst as it will help accelerate global warming and costs at the pump (as they say), yet these cars seem to be the least expensive, I could therefore get a better car, albeit at the cost of the planet and my children’s chagrin.

Then there is electric which is the best in terms of poisoning the environment although I know the cost (in a planetary sense) of making a new car, petrol or electric is significant and no matter how ‘clean’ the car companies say they are I know there is havoc being wrought in Africa and South America mining such things at Lithium and other rare-earth metals.

Electric appear to be the most expensive.

In the middle are hybrid.

Until yesterday I thought there was just one hybrid.

It seems there are two kinds – one, the more old-fashioned Prius type which charges the battery as you drive, converting braking and downhill coasting energy into electric that is stored in the battery and used for driving short distances and booting the petrol engine. You can drive for two or three miles on electric before flipping back to petrol.

This doesn’t seem that great and although it makes your petrol car a little more efficient, it is nothing special.

Then there are plug-in hybrids which have batteries that can last for 30 or 40 miles then flip over the petrol; if you are driving petrol your efficiency is less as the battery weighs about 100Kg, meaning overall you are carrying around a dead-weight. These are OK for short trips in and around town.

The jury is out on these although I almost bought one yesterday by accident.

Add-in to the mix all the financial mechanisms with a host of different acronyms, hire purchase, pay as you go, or whatever and I am in a mess.

This is why I became fed-up yesterday and decided, ‘I want a red car.’ This was followed by a call to a local dealership.

The only thing that is certain is I want a red car.

The rest is choice and confusion. Obfuscation and complexity.

I wrote this blog with the idea that it might help me come to a conclusion.

I need to hand-back my car by the end of September.

The clock is ticking.

I doff my cap to the Trabant.

Trabant_601_JM_09.03.2020

Two worlds

Yes and no.

Two worlds.

Renee Descartes coined the term which has now become associated with his name; Cartesian dualism. The mental and the physical. My mind, my spirit. You and my idea of you.

We have right and left. Or perhaps better written, Left and Right.

We exit in a world of off and on; the digital or binary realm is 1 or 0.

I have written before about my thoughts relating to this split in the way the world is divided, perhaps secondary to gender, perhaps the side of the brain that is dominant.

I don’t know.

What is clear and, this by no means says that it is a 50/50 split, people have tendencies or preferences towards one way or another. The majority probably sit in the middle – that indeed is what might be described the human condition; affable, agreeable, Mahayana.

the-middle-way-opart-duangjit

Yet, it is not these folk who determine the shape of the world – it tends to be those on the extremes; perhaps influenced a little by Outsiders.

I’ll get to some concrete examples.

It came to me on Thursday.

fox

I was attending the board of governors of my daughter’s school. I have been a member for the past year or so, I am therefore still considered a newbie – we only meet once a quarter, so that is approximately four meetings, with two that have been online and didn’t really count as I was on Zoom and others were in the room.

You see, there are those who perceive the world to be OK, or not even OK, but good. And, don’t get me wrong, for many people, especially those living in the West or in the UK, life is. Great.

diving

Some people see Great Britain as not a reference to E, S, W & NI, but, our overall splendour as a nation.

Financially, emotionally, socially, for some, things are as good as you might want.

Money in the bank, contended husband, wife or partner, children doing well, and all this, during a period of Covid that remains unpredictable.

Not quite Candide’s best of the best of all possible worlds, but, pretty OK.

My sense is that if you asked any member of the Conservative Party or some of their more passionate followers whether things are ‘OK’ they would respond in the affirmative*.

killing

And yes, if you look at lots of things, if you try to remain objective, the world I see and others encounter day to day, things are OK. There is water in the taps**, electricity when I turn on the kettle, the chance of my suffering a violent death minimal, I have clothes, shoes, a job. I even have two puppies (until next week).

THE TIGER WHO CAME TO TEA

If you re-wind the clock 50 years, and compare what I have with what my parents had, I would probably measure better on everything except perhaps the close-knit community and circle of family and friends that were the backbone of their existence.

Speaking personally, my health is OK, I can sleep well at night, I don’t have chronic pain, and I’ve an Apple Watch.

At the recent governor meeting we heard about all the fab things that are happening at the school – the level of happiness of the children, the satisfaction of parents, the successes and plans for the future.

Yet, this isn’t the whole picture. And this is my problem. It is a recurrent theme in my life, when I hear great things, whether it is the government spouting about the wonderful nature of our country, my employers telling me about the ace things happening across the hospital and in relation to the care of patients and staff, I keep coming back to a position of, and, which is part of an old song (which may not exist), ‘If it’s all so good, why do I feel so bad?’***

And this I struggle to answer.

You see, if I ask a group of people, ‘Are you happy, contented, warm, safe?’ and 90 per cent respond, ‘Yes, absolutely,’ there is a tendency to say, ‘everything is fine, let’s chill-out and watch some cricket.’

And for many people, perhaps a significant proportion of those 90 per cent, that is how they would feel. The ‘Things are good, why worry?’ approach.

And here is the split.

For, you see, within those respondents, whether they are proportionately representative of the whole or not, there are 10 per cent who are not happy. Who don’t feel contended, safe or warm. Indeed, they might be very sad, dissatisfied, scared and freezing in the cold.

If their lack of safety is 10 times greater than your perception of safety, are they safe? Are you?

And this is the point of this blog.

You see, and this is my sense, we question whether we should accept 90 per cent is OK and move on, or say, ‘We must to do more!’ – You could argue that those 10 per cent, whether they represent 10, 1000 or a million people will never be happy, so why try. Some of them might have the same amount of money, security or warmth as the other 90, 9000 or 9 million, yet their perceptions, their level of satisfaction is different.

‘You can’t please all the people all the time,’ is another song lyric.****

When I talk with my daughter, she like me seems to fall in to this minority group.

She has problems listening to some conversations where gender, race or social position is questioned or not valued appropriately.

She has sensitive antennae that create a situation where she feels that some people are being racist, sexist or hostile to others.

And, even if 99 per cent of folk are fine, she has a problem with that one per cent and feels she can’t rest until something is done.

Life and experience teach us that there are always going to be people who hold different values to us, in fact, much of the time there are always others who hold different viewpoints.

In the meeting I found myself isolated in my belief that cricket is a waste of time. Whether I should have confessed this impression I don’t know.

You can see where my daughter gets some of her ideas.

I agree it must not seem fair.

‘We have worked tirelessly to provide a workplace that offers high quality care/service/education/whatever’ – It can seem like a proverbial kick in the teeth when someone comes along, misses all the great work and focuses on the minima.

Yet, that is how some of us are constructed.

I remember telling a former colleague a few years ago, ‘Don’t worry, I am never happy.’

What I meant was, that even if we reach a point of improvement, innovation or growth where 99.9 per cent is great, I will worry about that 0.1, I will want to examine how we can push back the boundaries, review our systems and process to increase inclusiveness, safety, quality, fun.

You could call me a malcontent or you could consider me a continuous improver.

I prefer the latter.

Now to find a way to get this across without offending.

pride

*Please See Haruki Murakami’s Killing Commandatore for the origins of this.

**Can’t think of this without think of ‘The Tiger Who Came to Tea’

***?Olly Murs/Flo Rida/Moby/Dido/etc

****Abraham Lincoln manipulated into Bob Marley

Four pounds

I am not sure what I felt when I heard my son was being paid just over four pounds an hour.

It came as a surprise.

Equally, I’m not sure what I expected.

Back in the day, when I was his age, I remember working as a summer postman.

Traipsing around shaded Pollokshields streets, delivering mail to outsized sandstone mansions one day, 25 floor high-rises in the Gorbals the next. Me, an always early bird, loved the sorting, then the free trips on Corporation Buses and the dreaming that went with my imagining as to the contents of the letters, the occasional BMJ, Time or Newsweek magazine.

I didn’t have a Walkman. I was left to my own thoughts.

My son, zero-hours, works four hours, sometimes five. ‘No, we don’t need you today,’ is the essence of being young in 21st Century England.

Yes, we will treat you as a part of the commodity chain.

He doesn’t need to work. I am happy to provide. It is however a good experience for him and he is learning, at least that is what I tell him.

‘Think of it as an internship.’

‘I don’t want to be a waiter,’ he says.

‘I know, you are gaining life-skills and, well… Experience.’

He doesn’t answer.

In his heart I am sure he knows it is a con. A swindle.

There are no tips. Or, whatever gratuities exist, go somewhere else.

I don’t necessarily blame the restaurant owners. They have somehow managed to survive 18 months of pandemic trauma.

Yet, four pounds, or a little over, doesn’t seem very much.

I think of the very rich.

They seem easy to identify.

They appear in cars with V8 engines and convertible roofs.

They are the 1 per cent we hear about; those who have more than everyone else put together.

We don’t actually get to see the very rich. They live in hidden-away places, ferried from VIP lounge to business class. The tax-dodgers don’t need to hide their shame as they are hidden in their entirety.

Four pounds.

I imagine an average mid-class restaurant meal.

Maybe 80 pounds a head. If people are living it up, that might go to £120.

Two hours, £120.

My son gets £8 for that time.

That leaves £112 for everything else. Or, if it is a table of four, he gets £8, the restaurant £472.

The kitchen staff, other overheads, the cost of the food and so on.

Would I be happy to know that the young man or woman running around, smiling, tending to my every need gets paid 7% the price of my meal and, none of the tip. (2% of the table).

It’s a bonkers calculus.

I think what troubles me more is that fact that he seems to be content with the work and the pay.

For the first three shifts, that was 12 hours, he was told they wouldn’t pay him if they didn’t want to take him on.

He doesn’t eat meat.

The payment was rice and mushrooms.

A ‘good gesheft’ as my dad would say.

Again, I told him he is lucky. I am here to provide. It is not as if he has a family of his own to support. My dad, at his age already was working full-time and had a family on the way.

The economics of today.

A strange mixture of happenstance and powerlessness.

If he had been born in a developing country, £4 an hour in 2021 might appear reasonable.

I won’t tell you what I think. You probably already know.

We should be raising taxes and so on.

I hear the New Zealand Government is setting a minimum wage at $20 NZ an hour. That, according to today’s exchange-rate is just over 10 pounds an hour.

The point of this blog? Its purpose?

Like many I have written, I don’t know.

It is an appreciation of inequality.

It is a paean to inequity.

Nothing in life is fair, nothing is equal, everything an imbalance, a turmoil of what is and what should or could be.

My son, he’s ready to head out tonight.

Saturday night, rushing from table to table.

Waiters pad in hand.

Trying not to spill drinks or smash any plates.

Smiling, doing his best to please and support.

And me, what I am?

plague

To what extent has Covid damaged medicine?

I’ll start with a doctor from a while ago.

He worked in Rutherford in New Jersey.

William Carlos Williams.

He is also one of America’s greatest poets.

You see, back in the day, in pastoral times, doctors spent much of their time with patients, that is, seeing, talking, developing relationships. Frequently the doctor would pop round to visit people at home, WCW would treat poorly children, he would support the dying.

The kind of the image many of us hold of a family doctor.

As to when all that changed, it is difficult to say.

The modernisation of medicine, chronic disease management, a focus on primary and secondary prevention (stopping people becoming ill with say, heart disease and preventing progression for those already ill, perhaps after a stroke) changed the way doctors worked – more time was spent checking blood pressures and blood results – monitoring people in-case-of rather than because-of.

Over the past thirty years, our population has become healthier – people have stopped smoking, there has been an emphasis on low-calorie diets, zero sugar drinks and so on. With this, people have been living longer (until a few years ago when the average life expectancy started to fall, in part because of deprivation related to the government’s policy of austerity and asset-stripping social care).

People have survived cancers that only 20 years ago would have killed them, keyhole surgery, biological therapy and our current experience of the Covid vaccine has saved more lives, prevented more disease than at any other time.

All of this is fantastic.

Thank you modern-medicine.

Yet, it is not all roses.

You see, and this is something I have talked about before, for all the science of medicine, the unimaginable complexity of molecular biology, immunology and biochemistry, much of what doctors do, particularly physicians and general practitioners (who make-up the majority of medical doctors) is not scientific, it is engaging, listening, communicating, it is connecting with the human being inside each of us, it has far less to do with technology and much more to do with our inner emotional and psychological needs.

For all we spend time typing on keyboards and mobile phones, engaging with Netflix and Pop-Tarts, all of this change has come-about in the past 100 years; the humans we are, the physiological creatures, influenced by hormones, passions and obsessions, our fear of snakes and the dark, our liking or disliking flavours, our biases, our unconscious minds are all still closely related to that of our hunter-gatherer ancestors of 100,000 years ago.

Take away our iPads and electric toothbrushes and we will cope, strip us of community, of relationships with others and we will wither.

It is this human aspect of medicine that is more important and likely does more good than any number of fancy medicines, investigations and treatments.

I am not dismissing MRI’s and fibreoptics, it is just, if you replaced humans with sophisticated robots, and treated our stomach ulcers and damaged cartilage, we might not have these problems, we would develop others.  

When we are unwell, we have a need for assurance and reassurance, for guidance, for someone to listen.

This is what (at least to my mind) gives doctors their value.

This is why I believe it will be many years and hopefully long after I retire that robots will be able to do what I do.

And here is the thing.

You see, during Covid, only the very sickest people managed to see doctors. If they were taken to hospital or their needs passed a vetting process that led to a face-to-face doctor assessment (or, you were my patient in our care home, as I carried-on as before visiting and tending).

We all know that the majority of human communication is non-verbal.

It is not what you say it is how you say it.

Take away visual prompts – body language, pupil dilatation, fashion style or not and what is said is potentially distorted.

The communication is diminished. (SEE here for more!)

During the pandemic most doctor contact was done on the phone. In some instances this was conducted on Zoom or Skype, although for the most it was the phone.

It takes less (on average – some people can talk) time to talk with a person on the phone than see them face-to-face.

Doctor-patient engagement becomes transactional – ‘I did this, it was that,’ ‘OK, take this,’ kind of talk.

Indeed, I had a profound experience last week when after talking with a patient on the phone, she offered to see me in the surgery. I, thinking I was being super-helpful and kind, suggested it would be easier if I popped in to see her at home, after all, she had a bad leg.

It was only after, as I was getting into my car that she came (hobbled) after me, ‘I’d suggested I see you in the surgery as I wanted to talking about X.’ – she had been struggling to support her husband who has dementia and she found it difficult to speak in front of him.

I’d missed this subtlety.

I often miss subtleties; it is however more likely they will pass over my head on phone-calls than face-to-face.

Another example of this communication farrago was last week. Someone had the idea of conducting a face-to-face meeting. Given other commitments, I was unable to get to the desired venue, I therefore phoned-in. the meeting was therefore face-to-face for three-quarters of attendees and a few of us were online.

What happened was that the camera for the most didn’t focus on the people talking, those of us dialling-in were therefore left with disembodied communication over the less than perfect audio of VoIP – Voice over Internet Protocol; this is like the talks you have on WhatsApp. The sound quality is never as good as on the regular phone; odd things are done to the soundwaves that mean, FaceTime is OK because you can see and hear the person talking, but FT without the video is worse than a normal phone call and significantly worse than face to face. The people in the room therefore experienced full-on human communication (at its best, or worst), us on the laptops, were shut-out, maintained at a distance.

Now, what does all of this have to do with the end of medicine?

You see, my thesis is that a significant proportion of medicine is human relationship. Previously I have described it as a form of Shamanism. Just being in the same room as someone, mirroring their body language, maintaining eye-contact is itself therapeutic.

The pandemic and all the gubbins of modern medicine – the blood tests, health screening and so on I mentioned earlier has squeezed the amount of time doctors are available to doctor, to do the caring, that is the hand holding, the empathic engagements.

Over the last month GP contacts, we are told by the BBC, increased by 20 per-cent. There were 100’s of thousands more calls to GPs than before. All of this has squeezed the ability of doctors to support, to do the things that make the difference between us an robots. Relationship development can’t be squeezed, condensed or robotised. Transactions have become just that. Exchanges of information. Less silent sigh and more, ‘You said, we did.’ Which is OK if what you said was, ‘I have X, I want Y,’ but less so if you say, ‘I don’t know what I want, I don’t know what is wrong.’

Covid has pushed us towards transactions, away from relations.

And, just like the baby monkeys, if you take away the organic (even a mock-up mamma), they will fail to thrive, so too with our patients.

baby monkey

Effectiveness will diminish.

Patients will call again, and again, and again.

Three, five-minute consultations all taking people in circles, often, and this is very dependent on your individual GP (worse with the very big surgeries), you will move from doctor A, to nurse B and doctor C. Continuity of care and the associated quality of relationship is weakened and the outcome lesser.

People are forced into holding-states, like planes that circle airstrips unable to land, slowly running-out of fuel until they crash.

I like to provide solutions, ways-out of what at times seems like a mess.

I don’t really have an answer.

I think if the government, that is, NHS England, allowed doctors and nurses to spend more time with people and reduced the paperwork (or click-work) demands that would improve outcomes. It isn’t necessarily investing in more doctors or nurses, it is hacking away the inessential as Bruce Lee would say.

You start with a lump of stone and you end-up with David.

That is better than a rickety construction that blows-down when the weather changes.

Has Covid damaged medicine or is our society to blame?

I don’t know.

There is still hope – lots as there are so many people, nurses, therapists, healthcare assistants, carers, pharmacists and so on, all of whom are able to do the human-bit if on they are allowed time.

We are human, human; that is our skill, our blessing and our curse. Allow our humanity to guide us!

Between Walls tks to Rami and Dr J

Nakata, Aphasia and Sylvia Plath

I am working my way through Kafka on the Shore.

I’ve read it before, yet, for whatever reason, I seem to have forgotten most of the plot.

Yesterday I was re-introduced to Nakata.

He is the character who was strangely affected by an event in the mountains in Japan during the war. He, alongside 16 other children were knocked unconscious by a certain force. All the others recovered, although it took Nakata much longer to come-too and unlike the others he suffered long-term complications – firstly he developed what might be called a learning disability, losing the ability to use abstract thought, talking about himself in the third-person and, he was able to speak with cats.

It isn’t that unusual to hear about people who have a special connection with dogs and horses – we usually refer to them as whisperers. Yet, cats are somehow different.

Murakami loves cats – they are represented as characters and symbols throughout his writing.

Imagine being able to converse with a cat.

That’s what Nakata can do.

I won’t say more – you’ll have to read the book if you want to find out what happens.

It was this connection that made me think about the way I interact with some of my patients.

Those who have difficulties with communication.

This whole field, or, at least, when it goes wrong is the realm of a group of people called Speech and Language Therapists – SALT or SLT for short.

They tend to be called if a person has experienced a stroke and their language ability has been affected or for another reason a person has difficulty with swallowing.

I usually consider Speech and Language Therapists to be the cleverest of therapists as language is so very complicated.

At university I took a class in Psycholinguistics. I thought I was being clever learning about something so seemingly obscure – the psychology of language. Suffice it to say, I was lost and didn’t do any well.

I remember they talked a lot about something called ‘parsing’ go figure.

language

Anyway.

Communication is really the sine qua non of being human.

It is what separates us from other animals.

Sure, cats and dogs, primates and parrots can communicate, whales and dolphins can sing across the ocean, yet, the nitty-gritty of language, talking, chatting, enquiring, analysing and so on, blog-writing for instance is a human thing. (Setting aside any ideas by Douglas Adams)

dolphins

And, with this, is the critical injury to what it is to be human if this ability is damaged or lost.

I remember in incredible book I have somewhere called, ‘The Man Who Lost His Language’ by former Sheffield Speech Therapist Sheila Hale. In it she describes the experiences of her husband, Sir John Hale, the historian, after he had a stroke which damaged his ability to communicate.

language

I wrote a long time ago about my mum’s experiences with communication. After a stroke she developed what is called expressive dysphasia – this means, the part of her brain controlling her ability to produce certain aspects of language was damaged. She could still speak – she didn’t have aphasia which is complete absence, but more subtly, she would be lost for certain words or at other times confuse names or places.

In her living room we used to have pictures of me and my siblings on the wall with our names printed on the frame to help her navigate during phone conversations.

All this more complicated as even before her stroke she would mix-up our names. (My sister, with three brothers always came off the worst for this).

Even before mum’s stroke and certainly afterwards, she and I were able to communicated by looking at one another; our eyes conveying agreement, happiness, frustration or sorrow.

And back to my patients. People I never know that well.

Admittedly, thanks to my career change a few years ago, with my move out of the hospital, I have developed relationships with patients that are far deeper than anything I achieved in the 20 years prior, now I know whether someone is Mr or Mrs or they prefer their first name, or whether instead of that first name it is a nickname or another.

I have gained an understanding of my patients that is deeper than that of most hospital doctors when they transiently assess and intervene during a critical component of a person’s life.

And yet, if they lose their language, I am usually lost too.

There is one woman in the care home who has lost her ability to speak. This, through Alzheimer’s disease. She has never said my name, although I can usually get her to engage, to smile, that is, unless she is feeling unwell. I have a kind of telepathy with her.

I did briefly consider what would happen if we had a Nakata who could communicate with my patients who have lost their language, or at least their ability to speak.

What would they say?

Sure, it is more complicated than this.

Aphasia, or the ability to communicate is more than a mechanical disorder.

People who have had laryngectomies can still communicate with gesture, sign-language or tapping-out on a keyboard, aphasia is more profound, this is not having the words.

I have never read any accounts of what it is like to have aphasia and then recover – I imagine this has happened; I’ll have to research.

And yet, most people do not recover, particularly when the initial loss is profound.

How are dreams or memories affected by aphasia? What do you remember when the language that describes the past is gone? Do pictures still appear? Do images translate into actions?

I think of Sylvia Plath’s Bell Jar.

plath

Trapped inside.

The world moving, people going about their business, but no transfer of air or sound.

Of course all of this was much worse during Covid as we couldn’t make physical contact; there was no hand-holding. The people who knew my patients best were barred from access.

Imagine being inside that bell jar and the lights turned-out. That is what has happened over the past 18 months.

I thank John’s Campaign for fighting the bureaucracy.

All we can do is our best, use our imagination, our creativity to lift ourselves and others out of the constraints, the restraints.

Here is to the summer.

At least being able to feel the warmth of the sun is a form of communication.

Sensory engagement.

Let’s do that.

nakata

Roundabout discovery of a great French composer.

It all began with Murakami.

Haruki, the Japanese novelist.

haurki cat

He of Norwegian Wood, Kafka on the Shore and The Wind-Up Bird Chronicle.

And, What I Talk About When I Talk About Running.

It is somewhere in the Wind-Up Bird that there is mention of the piano music of Poulenc.

poulenc

On my desk in my home office I have an Alexa. It was last year’s birthday present.

When I am alone, undertaking what used to be called paperwork, now click-work, where I sign results and forms relating to my patients, I like to listen to classical piano. It relaxes me and the absence of words stops my mind from wandering.

I may or may not have heard of Poulenc before.

There was however, something about his name that enticed me.

‘Alexa, play Poulenc.’

As with most digital technology, it is good but not that good.

First it played some ‘Lets Link’ by Who Heem (explicit lyrics) then some Pink before I repeated, ‘Play Francis Poulenc’ (emphasis on the final nasal ‘onc’) and it cottoned-on.

heem

Straight away I was caught.

Drawn-in.

It felt like homecoming.

The answer to nostalgia.

First was Gnossiennes then Gymnopédies.

I have played these specific compositions daily, ever since.

It was only yesterday as we were driving in the car, I thought I’d ask Spotify to do the same.

‘You have to hear some Poulenc,’ (again hamming-up the ‘onc’) I said.

My daughter was sitting in the back practicing her French. 

This was when I found Satie.

Gnossiennes by Satie.

‘Satie must be the pianist,’ I said, wishing to sound as if I knew what I was talking about.

Contrary to every other time I have ever played classical music in the car, my kids were entranced.

My son said, ‘Siri, what’s this music?’

It was all very 21st century.

After we arrived at our destination which was the centre of Sheffield, I followed-up on this uncertainty. What does Gnossiennes mean?

For a start I can’t speak French although learning lots of medical terminology has given me an insight into Latin and Greek. Gnossi… Gnosis. Knowledge. Must be something to do with that.

And here I found the music, the compositions had nothing to do with Poulenc. Érik Satie was the Late 19th / Early 20th century composer.

satie

The creator of the romantically discordant notes, like raindrops, caramel sounds, drifting.

And here is the second diversion. For, during my searches, I came upon this definition:

gnossienne

I read the excerpt this morning before walking my dog round our local lake.

All the way I reflected on the music and the definition.

I thought of Alexander Trocchi and his view of the human condition. The tragedy of love.

trocchi

Move ahead, I’ve had breakfast and I return to the definition. I read the Satie Wikipedia articles.

It appears Gnossiennes is a word Satie made-up. No one knows where it came from. And the definition I have provided above is also made-up, it is part of The Dictionary of Obscure Sorrows written by American artist, John Koenig.

After a time you start to question what you know and what you don’t.

Facts can be convoluted or linear.

They can be jaggedy or zigzag.

They can be true or false.

We base so much of this on our sense of the world.

How confused and lost we are.

How capricious the human tongue.

How slippery reality.

Stop now and have a listen.

There are no words.

Just the music.

I guarantee, if you can’t sleep tonight and you play this tune in your head you’ll be gone in moments.

Better than Temazepam.

satie2

Poulenc’s not bad either.

Every time I stand up I fall over.

This is potentially a tricky one as it will blend medicine with an overall philosophical interpretation of what is wrong with some aspects of doctoring.

Where to begin?

I’ll start with the straightforward – a lesson in physiology.

I will not go into the details as they are long forgotten in a brain that was at medical school in the 90’s.

The essence, or the principle is –

Blood pressure keeps us alive.

Our beating heart sends blood flowing around our body, supplying oxygen, nutrients and other important things to our organs.

The two most important (if specialists will allow me to employ some anatomical one-upmanship) is that brain and the heart. Without either getting enough blood for more than a few minutes and you are dead. That’s it.

Not enough blood to the brain you end up with a stroke, your heart, a heart-attack.

The heart pumps the blood round the body by means of arteries.

Enough blood and enough pressure and all is well.

If the pressure drops, because you are bleeding profusely, that is a problem and also another blog, we’ll call that one shock.

If the pressure drops the most sensitive organ in the body is the brain.

brain

Drop the pressure for a minute or less and you will feel light-headed, keep it dropped for long enough and you will pass-out, continue that low blood pressure and you will die.

All of this is interesting – what does it have to do with standing up?

Well, think of it this way.

If you have a pressure ‘x’ we measure it oldfashionedly using millimetres of mercury. There are two measures – systolic and diastolic – the big one and the smaller one.

120/70

120 = systolic, when the heart pumps

70 = diastolic, when the heart relaxes and fills with blood

The big number is when your heart is pumping or squeezing blood, that is systolic and the lower number is the time in between when your heart is resting and filling-up with the blood that has just been send round your body, this is the diastolic.

Some people have low or high blood pressures, it tends to be whatever your body gets used to that is important.

In the West, high blood pressure ‘hypertension’ tends to be the problem as this can lead to strokes and all sorts of other problems.

More and more, particularly with older people and increasingly as a result of ‘Long-Covid’ we are seeing that low blood pressure is a phenomenon of concern.

If your blood pressure is OK, there is enough pressure in the system to push the blood from your heart the 50 of so centimetres to your brain (depending on the length of your neck/overall size as well as some other factors).

If the blood pressure is too low, you have the problem I mentioned above.

Now, here is the tricky bit that relates to standing-up.

When you are lying in bed or sitting down, the blood requires less pressure as your brain is not as high-up, when you stand, the pressure needs to increase a little, otherwise you have the light-headedness (gravity also pulls blood down to your legs).

I won’t go into this in more detail as I want to get back to the bit that matters to me.

Suffice it to say, if every time you stand-up you go light-headed or dizzy, it is possible (there are other causes) that you have the condition called postural hypotension (or, ‘orthostatic intolerance’)

I have never been one for intolerance, I therefore prefer the former.

This is an incredibly common phenomenon, linked closely with some conditions such as diabetes and Parkinson’s disease although anyone can get it. It tends to be more common as you age.

It is a major cause of older people falling.

Older people falling is often a bad thing.

Falls in older people can be the difference between life or death, independence or a life in care, further falls and restrictions in mobility. Pain.

For a long time the national guidance has been to check blood pressure with a person lying then standing, especially after a fall and especially for people who are 65 years and older.

You see, this is such a common contributor to falls, if you don’ take this measurement, the diagnosis is often missed.

Recently, I have been delighted as what we refer to as ‘lying and standing blood pressure’ or, for short, L&S BP, has been entering the mainstream.

MASAG-022

And here is the thing.

Here is my syndrome.

I haven’t given it an official name, although if you want to call it the ‘Kersh-effect’ I am sure my parents would have been proud.

Here is the example.

An 80 year old man, let’s call him Oliver.

Every time Oliver stands he feels odd, he describes this to his doctor as ‘dizzy’

His doctor tells Oliver he knows exactly what is wrong, ‘You have vertigo Oliver, I’ll send some medicine to the chemist.’

Oliver receives a drug called Betahistine (Serc) a few days later from his chemist (he is too dizzy to walk to the shops, he has to wait for a delivery).

betahistine

Oliver takes the medicine.

A week later his doctor calls-up. ‘How are you doing Oliver? How is the dizziness?’

‘No better, just as bad.’

‘It will be the dose. Try 16mg three times a day.’

Another week.

‘No better, I feel just as bad, last week I fell twice. Whenever I get up things are awry.’

‘Darn that vertigo,’ Says Dr, ‘Let’s try something stronger.’

Stemetil, otherwise known as Prochlorperazine arrives from the chemist. Oliver is taking Stemetil and Betahistine three times a day

prochlorperazine-maleate-tablets-500x500-e1593793337494

‘Well, how are things?’ Asks the doctor.

Not wishing to appear ungrateful, Oliver replies, ‘Maybe a little better.’

‘Fantastic. I’ll call you in four weeks. Keep taking the medicine, it must be working.’

Four weeks pass.

Oliver falls twice.

Once he is taken to A&E, he has broken his wrist. A Colle’s.

colle

‘Sorry, to hear about your wrist,’ says the doctor, ‘I guess you aren’t much better?’

‘No, just as bad,’ says Oliver.

‘I think we should refer you to a specialist.’

The referral take 10 weeks.

By now Oliver is falling every couple of days. He is finding it more difficult to cope at home. He has noticed his movements slowing and a shake has appeared (we call this drug-induced Parkinsonism, a side-effect of the Stemetil.)

You’ve probably worked it out by now.

I meet Oliver before he has seen the ENT person (who wants to order an MRI in case he has the rare condition called ‘acoustic neuroma’).

I check Oliver’s L&S BP.

Yes. When he stands his blood pressure drops. This had never been checked. It’s the diagnostic heuristic (where a doctor latches-on to a diagnosis and doesn’t let go).

I stop his blood pressure medicines. I stop the Betahistine (that had been causing him indigestion)(I forgot to tell you, the GP had prescribed medicine for this as well), I stop the Stemetil, his shakes settle. He is still dizzy.

I start Midodrine, a blood-pressure raiser.

A week later he is recovered.

This is my syndrome.

Maybe syndrome isn’t the right word. Perhaps condition.

No matter. It is something I find every couple of months. I don’t think readers would believe how common this is.

For want of checking the blood pressure a whole array of mismanagement begins.

And, even if the disorder is suspected, there is a strange phenomenon where my number-one drug – Midodrine, is not used, instead doctors prescribe either support stockings (not sure if anyone has tried to wear these on a warm day) or another drug called Fludrocortisone, which in my experience doesn’t work very well. They may even throw-in a little Stemetil.

(Until a few years ago Midodrine was not licensed in the UK – it was only specialists (like me) who could prescribe; now it is in the formulary and available. I believe it is this hangover that has stopped widespread use) (It was commonly used around the world, just the UK were slow to adopt).

Anyway.

Apologies if this is over-technical.

It is something that has been bugging me for ages.

Now, suffice it to say. If you are a patient, consult your doctor before stopping or changing any medicines. This blog is me thinking out loud – it is not medical advice for you, for this, you need to speak to someone who understands your health, who knows your past and is privy to relevant investigations.

There is nothing to stop you buying a blood pressure machine and checking

fainting1_3759

What matters.

On Wednesday, we ran another one of our Conversations about Covid.

This time it was different, as not only had we changed the name to Conversations beyond Covid, we were also missing Penny, Colin and Sara, my usual conversation friends. Fortunately Carole was there.

We were joined by Siobhan Reilly, Professor of Professor of Applied Dementia Research at Bradford University.

siobhan

Professor Reilly

Siobhan presented some of her research relating to outcomes for people living with dementia.

I know outcomes sounds a little dry, what it turned out to be was a discussion about her work establishing what matters to people living with dementia.

You might ask why this is important, beyond the confines of ‘nice to do’ well, essentially the research assessed through interviews with individuals and groups of people living with dementia what they find important – what matters to them.

You see, what matters to me, is necessarily going to be different to what matters to you – we are different people, with different interests, pasts, futures and passions. We enjoy different food, flavours and fashions. Take away this uniqueness, this individuality and you leave a person diminished. Dementia is enough of a diminisher; this work serves to undo some of that.

Tony Husband the artist was part of the team, adding his interpretation to the work. His are the pictures I have included here. (If you are reading on your mobile phone, click ‘Load All Images’ to see the photos).

what matters

Unsurprisingly, when you read the statements, what is important to people living with dementia is very similar to what is important to everyone else.

matters2

Those who exist or at least work outside of health and social care might consider this obvious. Why should dementia, a disease, alter what is important? Yet, the reality can be very different. The mechanisms, systems and regulations of health and social care in the UK and worldwide often serve to remove the person, to turn you, me, your mum or dad into a patient, into a series of diagnostic labels or codes.

(It transpires; the UK is a world leader in this, Person-Centred Care.)

As one example, everything that happens, particularly in healthcare has a code.

This is how the accountants and economists can work-out costs or volumes of work, this helps them build contracts and business plans. It is the sharp end of turning soft into hard.

Every disease, test or condition has a letter and a number.

community

I do know one doctor who is so versed in some of these codes that he writes them in his notes – you haven’t had pneumonia you have had ‘Pneumonia, ICD 104.3’ (or whatever – I made that one up).

All this is very well, and we live in a world where care is dependent on budgets – not wholly, yet, if you only have enough money for three nurses when you need six, the quality of care those nurses provide will potentially be diminished. At the very least three nurses will struggle to support their patients as they should.

Anyone who has spent much time in hospital will recognise the phenomenon of the invisible patient. This is where doctors are talking about someone’s lump or rash as if they are not in the room, porters chatting or carers discussing last night’s TV whilst bed-bathing an old man, it is easy, if you are not careful to shift from doing with, to, doing to, and, when you do to, the person can vanish.

isolation

There seems a universal human switch that at times can be unconsciously activated, when people are not seen as people, where the stresses, nature or demands of a role shifts perceptions. It is a feature of every walk of life across every culture.

Patients, with or without dementia experience pain, they can be upset, afraid, happy or sad. They can worry; they have hopes and preferences. They are just like you or me. Indeed, many of them are you or I.

(I did some research a few years ago on the experiences of people attending A&E with hip fractures; if you have dementia and a hip fracture you are more likely to get paracetamol (or nothing) (rather than morphine) as a form of pain relief than someone without.) (Trust me, if you break your hip, you want the opiate.)

It is likely if you are reading my blog you are amongst the converted.

As to how I can get through to those who see my actions as beyond the pale or outside the realm of what a doctor should or should not consider, I do not know.

Siobhan’s work may help shift the dialogue.

Does a 5% increase in survival matter? Does a reduction in bed-days, length of stay or rate of readmission matter to Sadie? Yes and no.

If you are Sadie, you want to be treated as quickly as possible with a minimum of pain and with the appropriate medicines. You also want to be considered as a human. You want dignity, respect, caring and maybe some humour.

Back to what matters to me.

To be honest, I am sitting in a cold garage in Sheffield. It is Saturday morning. I don’t feel much like revealing too much of me.

There is a spectrum.

fear

What matters a lot and what matters so so.

Ambient noise levels, the temperature, the garage who have decided to charge me for the repair I was told would be free*, the rain, the cold, the builder who has spent too long working on our shower, my dog’s swollen ears that have now recovered, the phone call yesterday that kept cutting-out, the offer of a cup to tea or cake, sharing with me a little of who not what you are, comfort, quietude. The grammatical underlining of Microsoft Word, all these things and more. They are what it is to be human (‘ve chuoole’ (and, so on) as Shulem says). Human all too human as he said. We are fragile. We are vulnerable. We are all alone.

and etcetera vi chule

*In the end they did the repair for free; Values. What matters. It runs through everything like Blackpool Rock.

** If you want to join the next Conversation beyond Covid which is on Thursday 27th of May between 10 and 11am on Teams, follow this link. We will have Phil Joddrell from Sheffield University discussing his work related to digital isolation.

Reilly, Siobhan T., et al. “What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions.” Age and Ageing 49.4 (2020): 664-671.

rock

Muffled sounds, drum beat and dementia

Last night I watched the 2019 movie, Sound of Metal.

The film explores the experiences of Ruben Stone a heavy metal drummer who develops profound hearing loss.

Riz Ahmed of 4 Lions is Ruben.

A few weeks ago I was involved in one of our ‘Conversations about Covid’ in which audiologists from Manchester and Sheffield discussed some of their work.

You see, hearing matters.

I asked the question which I am sure others were thinking, ‘Of all the senses, I imagine if I had to lose one, I would chose hearing.’

This question was naïve.

It reflected little understanding of what it is to be deaf or what it means to have sensory impairment; it is akin to suggesting which organ you could or could not do without, a form of anatomical one-upmanship, ‘the brain’ ‘the heart’ ‘the kidney’ – I see the imagine neurologists, cardiologists and nephrologists proclaiming their organ to be the most important.

No, I had underestimated hearing.

The movie does a good job.

It emphasises that hearing loss is not just the functional inability to hear sounds, it is more, far deeper. The psychology or an individual’s mental approach to the loss is as important.

And, when you start to look more deeply, you realise that sound is not just conversation or telly, it is ambient noise, birds in the trees, the wind, passing cars. My dog licking her paw behind me, my breath.

Sound is music, it is a connection to others, it is an internal link to the past.

Inside my head are stored the shadows of every sound I have ever heard, every song, every voice; etched-out in faint outline, ready to rise again should there be a need.

I can’t hear my mum’s voice although if she were to speak now I would immediately recognise her, the same with my dad, my grandpa, people I haven’t seen or spoken with in decades.

And so too with music.

That hit from 1977 is embedded somewhere inside of me.

Back in the day when I used to have inpatients and work on a hospital ward, I would play the Beatles. This was the sound of my ward rounds. This is the sound that would echo as I chatted with patients.

Norwegian Wood

Yesterday

Michelle

Penny Lane

All resonating, taking me back and creating an atmosphere.

From the Conversation we discussed research which shows that even mild hearing loss can increase an individual’s risk of dementia by two, significant loss by a factor of five.

Hearing is more than noise or sound.

Hearing is communication.

Opticians are on every street corner, we wear sunglasses for fun; hearing aids have yet to become fashionable.

I am often frustrated when I visit a nursing home and the rooms are filled with 40 watt light bulbs. A false economy. The owners save money on electricity at the cost of residents falling over.

Even those enlightened places that have invested in Phillips day-lighting often miss the importance of hearing.

Hearing aid batteries are flat, they are lost, wax accumulates and no one checks.

The confused old lady does not have dementia, she has lost her glasses and her hearing aids were thrown-out with the laundry.

We don’t respect hearing.

Whenever I think of hearing and music I always consider Beethoven.

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He was deaf. He seemed to get on OK.

How little I know.

In Scotland and Wales, all national broadcasts from the government are accompanied by people signing. Not so in England.

sign

This doesn’t surprise me.

In essence, I feel that no one cares.

Or, if they care, they don’t think.

If it is something that can be measured, say, amount a person drinks, the presence or absence of pressure ulcers, falling weight, even satisfaction scores, attention is paid.

Yet, the silent world inside our heads is forgotten. Overlooked.

Every so often a fuss is made when a translator can’t be found to help with a clinical encounter where the patient doesn’t speak English.

How often is a fuss made when the patient can’t hear?

It is a moral offence to label someone as ‘being demented’ unless you have proof they can hear what you are saying.

I saw a patient the other week at his home.

His daughter insisted she be there when I visited.

Upon my arrival I had to wait a few minutes until she cleaned-out his hearing aids.

In the end, he could hear some of what I said.

‘He usually says ‘yes’ when he can’t hear.’

What can we do?

My patients sometimes experience delirium.

There are two kinds – hyperactive and hypoactive.

In the former, people tend to have broken sleep, they can be distressed, agitated, restless; with the latter, passivity reigns.

Passivity and deafness seem to be linked.

Those people who experience the hypoactive form of delirium have a much higher risk of dying.

What does deafness do to your chances of survival?

How do we up-end this situation?

In my medical student lectures I always emphasise the importance of making sure the patient can hear you and if they have hearing aids, to check they are working, the batteries are in place and have power.

We need more.

Part of this is design or technology, to make either trendy hearing aids or ones that work, yet more important, by an order of magnitude is to raise awareness.

Awareness that when someone says ‘yes’ this could be part of their conditioning rather than an agreement, when a person is passive, doesn’t appear to engage or seems to not understand your direction, consider that they may be struggling to hear you.

It is the mantra I have been carrying for years – don’t assume the patient is bad or stupid or lazy, don’t foist your prejudices or pre-judgements upon them, engage in a spirit of openness, without baggage.

Check and check-in.

Sensitivity.

Is their response appropriate?

Imagination.

Use a pen and paper, your phone, a laptop – open Word and write big.

Check the hearing aid batteries.

Look into the patient’s ears – admittedly this requires an otoscope, all GPs have them.

If your accent is too thick, your voice too quiet, ask for someone to translate, English to Yorkshire or whatever.

Take it slowly.

Repeat.

Patience.

Eye contact once you have established the person can see.

You might even have to lower your mask.

Don’t shout, this usually just creates muffles noise that doesn’t convey your message.

Speak to an audiologist.

Watch the movie.

Subtitles are optional.

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If you want to join my next Covid Conversation – follow this link at 4pm on Wednesday the 5th of May via Teams (check you have it downloaded first).

Phone fraud and Mammeloshen*

It was approximately one year ago when the fraudsters first came for me.

I remember sitting in our dining room, just beside my aquarium when the phone rang.

The caller was identified as my bank.

I thought, ‘How odd,’ and, answered.

They said they were the fraud department and had detected some irregularities with my account, they were concerned that someone had obtained my details and was spending.

In hindsight this all sounds fishy although, at the time, I went along with their request to confirm my details.

I remember experiencing a sensation similar to that which a fly must feel as it slips down the throat of a pitcher plant. Suspicion mixed with curiosity.

Suffice it to say, the conversation continued.

I remember my son, sitting on the settee across the room listening-in.

I went as far as confirming how much money I had in my personal account, they even managed to obtain my mother’s maiden name.

When they asked me to move money to another account I decided enough was enough, politely hung up and phoned the bank.

Yes, I had been diddled.

It is funny as, the last time I found myself in a similar situation, that is, doubting the veracity of someone on the other end of the line was 20 years ago when as a junior doctor working at the Northern General in Sheffield I received a call from switchboard.

‘Hello, how can I help?’

‘This is number 10.’

‘Number 10 what?’

‘Downing street.’

I laughed and hung up the phone. My curiosity was sufficiently piqued for me to call directory enquiries and phone up No. 10.

It had been them.

Tony was PM at the time.

Anyway, I managed on this occasion with the bank to get away without parting with all my cash, not that I have much.

I called the bank, they confirmed it had been fraud, I was left feeling exposed and that was that.

After the phone-call, my son informed me that to him it had been obvious I was being hoaxed. ‘Why didn’t you do or say something?’ I asked. I can’t remember his reply.

Then a couple of weeks ago I received another call.

Again it popped-up as my bank.

Again it was the fraud people.

This time I was prepared.

I fumbled with my phone trying to get it on ‘record mode’ – unfortunately, my phone doesn’t allow this. I even tried to switch record on my computer. I wanted to catch them in the act. That didn’t work either.

I again politely hung up and called my bank.

Yes, again, fraud.

This time I was a indignant.

On the first occasion I had felt invaded, compromised, stupid.

This time it was something else.

The bank confirmed that my money was safe, they had been fraudsters and nothing bad had happened.

‘But, can’t you do something?’

By now I was thinking of all the people who would likely have gone along with their deception. As humans we are all gullible although older people sometimes retain an air of respect towards authority. I could see someone, perhaps isolated after a year of Covid, talking with the man, revealing all, losing everything.

The bank advised that because I hadn’t lost anything, there was nothing they could do.

‘Couldn’t you track the call, or get the police to do an analysis? I kept him talking.’

Nothing.

In the end they passed me to a woman in a call centre in Scotland who it appeared had been trained to deal with fraught customers. Skilled in the art of calm, she confirmed there was nothing anyone could do.

Searching the net for a way to report what had happened led me down a warren of internet links and unanswered or automated phone calls.

The anonymous 21st century had turned-in on itself.

I imagined how people who had lost their money might feel. The mixture of anger, frustration and embarrassment, most of this directed inwardly.

I can’t imagine how we protect people from these predators.

Many people I know don’t answer the phone unless they know who is calling (me included) (leave a message please), others just don’t answer the phone.

These criminals have managed to limit the limited contacts some people already have. I am certain they must have taken advantage of the pandemic.

The bastards.

Last night I watched an episode of Shtisel with Annie.

shtisel

This is the Israeli drama on Netflix which follows the life of Rabbi Shulem Shtisel, an Ultra-Orthodox Jew living in a Jerusalem neighbourhood.

I especially enjoy the seamless shifts between Yiddish and Hebrew in the dialogue.

Anyway, last night Shulem’s mum died.

They had the shiva which is the seven days mourning where the immediate relatives sit on low chairs or the floor with torn clothing and pray and meet with family and friends.

In this episode a man turned up, black suit, peyot and so on.

He took Shulem aside and showed him a video he had recorded of his mum. In HD his mum, bright and smiling recollected the birth of her son, elements of the story of her long life.

‘I have two hours recording, time I spent with your mum.’

‘How did you manage to spend time with my mum?’ (‘Mamme’ he would say in Yiddish) ‘Can you make me a copy?’

‘For a small donation to cover my expenses. A thousand dollars.’

‘I don’t understand, how did you meet my Mamme?’

‘Well, you see, I travel round all the care homes and spend time with the folk and record.’

It became apparent that this man was a memory thief, his intentions to steal the memories and sell them to bereaved relatives, turning up as the mourning starts. A sinister memory bank.

I won’t tell you what happened next.

It is a neat idea, recording the recollections of old folk.

I’d love to have some video of my mum or dad.

Again however this is confidence tricking, manipulation, playing on uncertainty and emotion.

We are all so very vulnerable.

You walk past houses that are sealed tight with fences and high gates, with infra-red video cameras and the whole security works, yet, what is most vulnerable, us, our egos, is harder to protect, and really, the more you protect your ego, the smaller your horizons and this is another kind of robbery.

The answer?

If anyone calls you, ever, claiming to be from the bank, the insurance or whatever, if they ask you for information they should already have, hang up. You can do it politely. Just hang up. If it is the bank, the supermarket or the council you can find their number online and ring up and check.

The worst that will happen is you are stuck in a long phone-waiting queue.

That is a little win for the thieves, but better than a full frontal expose.

Take care.

pitcher

*Mammeloshen = Yiddish for ‘mother tongue’

Safe in heaven. Thank you Freda.

I learned this week that Freda has died.

The circumstances were odd, a little like our relationship.

You see, Freda and I had never met.

We came close once, a few years ago when I almost visited her at home, although for reasons I cannot remember, that did not happen.

We had been in weekly contact for the past few years.

She was my oldest friend, she was 80.

I am not sure if you can call someone a friend if you have never met them in person on even spoken with them, such are the gifts of digital communication however, we had weekly contact.

Usually Freda would read one of my blogs, both if I managed one on Saturday and one on Sunday and almost always add a comment. Sometimes a literary allusion, a quote from a poem she knew or a reflection of her lived experience.

And, without missing, she would re-tweet my blog.

From time to time we would exchange some WhatsApp’s, mostly it was tete-a-tete via my blog.

Once, perhaps a year ago Freda had stopped commenting. I made contact, perhaps on WhatsApp or Facebook and she explained she had been under the weather, feeling low. I think she became depressed from time to time.

I most recently contacted Freda as she hadn’t commented on any of my blogs and she hadn’t re-tweeted.

The reply later that day was from her niece who had Freda’s phone, informing me that she had died.

It was an odd finality.

I of course was unable to say goodbye, and I didn’t feel it my place to ask more questions such as, when, how, where.

Anything more, beyond Freda no longer being here, no longer being able to read more of my blogs or engage with me seemed like voyeurism.

And yes, I have felt sorry and sad.

Now I will never meet her.

I remember a couple of years ago when I was having some problems at work with comments that my blogs had provided too negative or bleak a portrayal of older people in hospital, Freda supported me with the phrase that sticks-out of my blog being, ‘Older person certified.’

As I have said, our relationship was unusual, not just because we had never met or even spoken, but because it was so very one-sided.

Freda knew all about me, reading my writing and I, knew very little about her.

She lived I Nottinghamshire and she had worked to support people living with dementia, I knew she didn’t have children – she did sometimes talk about her nieces and nephews, I think she had been a teacher, I also think she might have lived in America or even been American.

You see, never having spoken with her, I didn’t know her accent. I saw her photo on Facebook although on Twitter she was just a shadow image, with the intriguing name ‘@ColleyOf’

Freda’s death took me back to the death of a friend of my mum’s.

I remember driving past her house in Glasgow a few years ago, knowing she was ill, knowing she was probably at home and also would have been delighted to see me, yet, not visiting.

What strange psychological nonsense happens in my mind, with my thoughts, I can’t really tell you.

Not infrequently, I think of people, think of getting in touch, maybe talking or catching up, then something, another, seemingly more influential idea over-rides that decision and nothing.

Whether it is the fear that people will not want to see me, a reluctance to intrude, to disrupt the life of another (here I think of Philip Larkin) or some other notion. I keep my head down.

When I was younger I don’t think I had this problem, I remember being more outgoing, revelling in the company of others, going out of my way to make contact – whether that was strangers on a train or bus, or fellow travellers.

Nowadays I keep to myself.

I spend proportionately more time locked into my head.

Some of this is a fallout of my job.

When I was a junior doctor I began hating the phone as my life when working had been ruled by the sound of a bleep followed by a phone call and the request by someone, often a nurse or other doctor for me to do something, usually help, prescribe a medicine, see a patient, fill a form.

Some of my days, particularly Fridays when I work for the surgery are filled with phone-calls – more since Covid. Conversation after conversation.

I always do my best to engage with whomever I am talking. To be present in the moment, to take a person-centred approach, to talk from the heart, yet, this can be exhausting.

A few years ago I was involved with the local charity B:Friend – I was their first chair. I reflected at the time why I didn’t befriend a local older person like others, there must be many round the corner from where I live who would happily spend time with me. Yet, I never did.

My work, the engagements and care I provide for older people don’t come free. Sure I get paid – very well, but more than that, it is the emotional cost that tends to use me up.

This is no excuse – ‘Sorry I never met you Freda, I was too busy being a doctor,’ Well, there is something in that.

I was busy being a doctor and, well, I am odd.

As I have aged I have become like most people, more fixed in my ways, my introversion has increased, the time I spend alone or with my dog has become greater, the hours I spend reading, listening to audio-books or podcasts has expanded.

Me and my dog and silence.

Silence is sometimes needed to re-charge.

And yet, Freda is gone and I never really said hello.

It might seem odd to some, yet, I have been more affected by Freda’s death than the many many people I have known to have died in the past 18 months, most of whom have been patients or colleagues, some I have known for greater or lesser periods of time.

Freda had in a way filled-in a surrogate mum, at a distance.

Most of this is self-indulgence. Exposing my feelings, why?

And, I can’t help thinking how much digital has to blame.

Yes, were it not for the internet and computers, there would have been no blog (these might have been diaries) and there would have been no connection. Yet, there would have been no digital legacy. No Facebook or Twitter ghost.

And, will I now change?

Will I get off my bottom and connect with the friends I haven’t spoken with in years?

I suspect not.

Whilst not tragedy, this is apathy.

I’m sorry.

Take care Freda, I will remember you.

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Hey Mr. Blue Sky

It’s funny. I love the song Mr. Blue Sky, yet, when a couple of years ago I used to play it or any of the songs on the ELO’s Best Of album in my car, there was something about it, not sure whether the pitch, the tone or maybe Jeff Lynne’s voice – that drove my son crazy and he would insist I turn it off.

That is not to say my son doesn’t like blue skies; he is as much a lover of sunshine and cloudlessness as me, yet, there was something about the music.

For the past six months, or so – the chronology of events since 2019 has been hazy, I have used when meeting people either on Zoom or Teams a self-made backdrop of blue skies with white fluffy clouds.

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It only became apparent to me this week that they had any significance beyond helping to cheer me up during the recent dark times.

This week I met with some of the team; we were discussing ideas for how we could improve the way care is delivered to our patients.

Before I took my recent holiday (two weeks with close-to-home trips to Lincolnshire and the Peak District) I wrote two ‘papers’ which discussed some ideas of how we might work differently.

I have put ‘papers’ in inverted commas, as it took me ages to come to terms with the use of this word in relation to something I had written. You see, in NHS management, when you write something on a document and particularly if you submit it for use in a meeting, your blurb becomes ‘papers’ – ‘I have submitted a paper to the recent…’ kind of thing.

I always used to regard a ‘paper’ as something published in a journal, for example, ‘He wrote an important paper on the association between smoking and…’

Anyway, I wrote two papers.

One focused on how we might improve the support for people living with frailty in Rotherham, considering strategies to slow decline and optimise health and wellbeing and, the other, on how we might care for those people who are frail who have episodes of ill health (essentially doing all we can to keep people well and keep them out of hospital).

Anyway, it was at this recent meeting that Rachel one of my team referred to the document as being blue sky.

What followed was a sudden linkage with the reality of what I had written, which was in essence ideas sans numbers – cost, time scales, that kind of thing and my background.

What became even funnier was the background I occasionally use of a photo I took in the winter of a cob-web.

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It transpired that those seeing me highlighted in this way took my background as a kind of message… Rod’s in a cob-webby place today.

When I think about all of this, when I consider who I am, what I like, what makes me happy, that kind of thing, it is the blue sky space. (‘space’ in an architectural, meta-artistic sense).

And, funnily, this links directly with the purpose of this blog, you see, the almond and emotion, this is the part of the brain, the amygdala, shaped like an almond which is the source of our emotional response to the outside world, also the gateway to creativity.

In situations of chronic stress or abuse, we bed-down, we shrink from the light and seek strategies for coping and survival, we think small, we dodge scrutiny, like prey animals, cowering mice sticking to the shadows.

When we feel safe, we can lounge, we can say silly things, we can risk being misunderstood or misperceived, we can experiment, dally, mess about, allow serendipity to intercede.

This is the blue-sky.

How I love the blue sky.

I am a blue sky guy.

To me the blue skies are where we are alive.

This is living.

This is out of the facemasks, the quarantine, the fear, away from the hypercritical, it is a good place, it is fun, happiness, where you might enjoy a little ELO, if you are not my son.

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**Anyone interesed in reading these papers, I am planning to send them out next week.

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>>If you have read this blog on FB, Twitter or LinkedIn and you found it enjoyable, entertaining or weird – any will do, I’d love if you shared it. Thanks<<

His left testicle.

I often think back to the school years I spent in Israel.

I wonder if my children will carry their own memories of their lives in the classroom.

If I stretch, beyond the playground memories of M. clearing-up after the flood or the distraught Maths or French teachers who, reaching breaking-point, became overwhelmed by our rowdy mischief. I also remember, I.

Now, I. wasn’t a teacher. He was our teacher’s husband.

My memory is of one afternoon in their living-room at home.

It must have been the last year of our middle-school, which was somewhere around 1989.

We as a class, helped by the teacher and her husband had written a play to mark the end of our time at the school.

The play consisted of a number of scenes involving the story of Israel, with new immigrants arriving at the port in Haifa (I still have the brown-leather flat-cap I borrowed from my dad; it is in my garage in Doncaster), some war/battle scenes, through to a re-enactment of an episode of school life where we as a group of wild-but-nice boys raided a strawberry field, day after day.

Hiding underneath plastic tarpaulins, we gorged.

I can’t remember how many forays there were to the field or whether we did this over more than one season.

The final time we went the farmer was waiting and caught a number of us. I don’t think he hit anyone too hard, more probably shaking by the arm and shouting; I remember he was from Yemen.

The story became legend, with the strawberry fields and the chase frozen into my memory.

Anyway,

In the living room, I. who had a theatrical past – perhaps he had been involved in amateur plays, was supporting the production.

None of this really matters as that wasn’t the memory.

I can tell you they had black and white photos of their relatives on the walls of their house, that and a central coffee table is the extent of the detail I have held onto.

And, oh, I. He was wearing sandals and shorts.

It was probably late-May, when the weather in Israel is starting to become quite warm.

Now, the memory, was of I’s left testicle dangling from his shorts.

Saggy, drooping down his leg.

We, the children, probably 15 years old at the time found this hilarious. No one said anything. How could you?

Yet, I now reflect, I. back in 1988 was somewhere around 45 at the youngest, probably in his early 50’s.

That isn’t much older than I am now.

I can’t imagine a situation where I would sit at home with a room full of school children and allow my testicle to hang-out.

Sure, I have encountered old men who let themselves go, yet, this lack of self-awareness seems odd.

It surely was not intentional – a form of auto-erotic exposure. I can’t believe it.

I remember him and his wife as being a lovely, caring, dedicated couple.

My teacher, R’s smile in particular, warm and proud of our academic accomplishments.

Yet, the testicle.

I wonder how long this will stay with me.

I am sure were a similar situation to arise, say, my own kids experiencing exposed genitalia there would be a safeguarding investigation.

Then again, they have never visited any of their teacher’s homes.

It is a different world.

The weather is never that hot in South Yorkshire.

Upside down and better in some ways, but mostly lesser. Diminished.

Their memories will be their own.

Klara, digital capital, Superman and me

Yesterday I listened to Adam Buxton’s interview with Kazuo Ishiguro. Last week I read his book, Klara and the Sun. Kazuo’s that is; Buxton has as far as I know only written one called Ramble Book‘.

I’ve been listening to Adam Buxton for the past couple of years – not sure how or when I discovered him in the Podcastosphere.

This interview was, perhaps after his talk with Fran Healy his best.

I won’t go into details about their discussion, you can tune-in if you like and, I won’t specifically discuss Klara and the Sun, as saying too much might give-away important aspects of the plot.

I will mention Shoshanna Zuboff. I discussed her book a couple of years ago – The Age of Surveillance Capitalism, the link to my blogs are here.

In the book, Zuboff, a Professor of Social Psychology at Harvard discussed the many systems at play in the world of digital and social media used to understand, control and manipulate us.

Sounds sinister. It is.

The Information Capital as she describes it, relates to the valuable bits and bytes of personal information we all share continuously as we either search the web or engage with others on web-based platforms.

It is all captured, analysed and fed into and out of massive super-computers the likes and size of which no one can imagine.

Suffice it to say, the computers are today, adequately large and sophisticated to know where I am, what I had for breakfast, the clothes I am wearing, the brand of coffee I am drinking, my dog, her food, and on and on.

This must make it difficult if you have paranoid schizophrenia.

Arthur C Clark said, Any sufficiently advanced technology is indistinguishable from magic, and indeed, some of the abilities are so beyond our everyday experience that we assume they are impossible. In the realm of fantasy.

Whether you read Zuboff’s book or take my word for it, everything we do, say, read, like or dislike online is being monitored and processed, it makes someone somewhere money, maybe a millionth of a penny, yet, when multiplied by a million others and another million, you soon have a beach-front holiday home.

I may like or dislike The Stone Roses. If enough people click enough likes and dislikes to me who share a similar demographic, the computers will be able to statistically work out the probability of my appreciation of Ian Brown and co.

They didn’t mention Zuboff in the podcast. They talked about another element of technology that is AI. Artificial Intelligence.

When I was younger (1997), we all shared a mixture of surprise, elation and disappointment when the computer (Deep Blue) beat Gary Kasparov at chess.

Most recently, a master player of the game of Go was defeated by a souped-up 21st Century descendent of DB, AlphaGo.

The computers are gaining intelligence and ability, all day, every day.

The Turing Test is designed to establish a computer’s potential for human reasoning.

In the podcast they were playing-out this idea.

Let’s skip forward 20 years (or so).

Two decades in our world is such a long time that whatever I predict will be hopelessly inaccurate.

By that time, we will possibly have computers of adequate sophistication, ability and intelligence to be me.

When I say be me, that is, have integrated all my past memories, thoughts and ideas, my behaviours, imaginings, hopes, anxieties, abilities and failings.

The interface will likely have evolved, that is, the robot exoskeleton to the point that you look at me and you look at the computer me and we are indistinguishable. This copy has the ability to age like me. It may even experience similar aches and pains.

(Pictures for me a scene in Klara and the Sun when human Ricky is giving Klara a piggy-back).

My identical twin, matched for everything down to my love of Sport’s Mixture.

And, doh, there I go, giving the internet another piece of me, for later filing (that is, unless I hate Sport’s Mixture and have included it in this digital nugget to mislead would-be digitisers) (Wine Gums anyone?)

The scenario.

Technology has advanced. You can’t tell whether it is Rod or his replica.

Where do we go from there?

Well, how are we different beyond me saying I am me. (As happens in all such films/books – picture Superman IIII)

superman3

‘I was here first. I am the real Rod!’

This could go on indefinitely, round in circles of double-speak and conjecture.

My family might not be able to distinguish between Rod and Robo-Replica-Rod.

(I am sure my dog would know, although it is unlikely her senses will be that effective in 20 years, if she is still going herself).

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This does sound like science fiction and it most certainly exists within that realm.

Yet, conjuring another scenario, and, giving my family all credit for their astuteness and with the assumption that the magic of tomorrow will remain imperfect to some extent, that future replicant me will have something about them which will reveal its artificiality.

January the 1st 2041 I die.

January 2nd there is no me.

(Presupposing death is a thing in 20 years).

Hopefully. Surely.

My family are faced with the option of having no me – they might be relieved at this (my crankiness having reached an unbearable nadir by then) or they might regret my passing.

At this point, maybe the next day or the one after, what role would there be for Robo-Replica-Rod?

Would they prefer to mourn, get over me and move-on (as we have done since we became human) or would the potential of stretching me out, prolonging my existence be a consideration?

It is likely, if not probable, in two decades I will still be working.

Robo-Replica-Rod could be sent to work, continue to see patients, arrive at unexpected diagnoses and treatments.

How should my family behave towards future-me?

If they treat me like a copy or a robot or a not-Rod, my Robo-Replica-Rod feelings will be upset – the alternate me will have all the same (or very similar) emotional responses, requiring the same level of social engagement as the now deceased model.

OK.

This has gone a little far.

Yet, and this is what I was thinking.

Those of you who read my last blog will remember I mentioned my parents.

If I had the option of recreating them is this something I would choose?

If my children could spend time with the grandparents, they never really came to know.

This wouldn’t be to my mum and dad’s advantage as these would be replica-mum and dad, yet how would my children have been influenced? They joy of my son and daughter acquiring the odd Yiddish nuance or Glasgow quip. How would I have been affected if it were possible for me to sit in the kitchen and chat with my mum as we used to?

Perhaps this is all wrong.

Temporal sacrilege.

Sorry if I have upset anyone.

And, you could say, what is the point?

What is the value of this conjecture?

Why not shut up and get on with whatever it is you have to do today or tomorrow?

It is likely I haven’t captured what Kazuo was trying to say.

Maybe you should listen to the podcast and afterwards buy his book.

From Waterstones.

Dementia, David Cameron and losing ground

I am no historian.

I struggle with details.

Dates and times have never been my thing.

I am however a reflector.

I look at the world around me, absorb its colours and ponder.

I was going to say ‘think’ although FEEL is probably more accurate.

For once, I will not quote Bruce Lee (Google, ‘almondemotion Bruce Lee’ if you like).

What do I feel about the situation in 2021 for those living with dementia?

I don’t want to go over the headlines, the disproportionate impact of dementia, the human rights abuses, blanket DNACPRs, the absence of PPE and training in care homes then the lockdown of residents, the separation of husbands and wives, sons and daughters.

Early-on in Covid I reflected that I was fortunate for my mum to not have lived to experience the pandemic. She could never have coped with the remoteness, the disengagement. She would have seen it as a desertion that no amount of FaceTime could undo.

There are not many occasions when being an orphan is an advantage.

If we go back five years, we have DC as the Prime Minister.

Yes, I hated him from day-one, not just his sibilant privilege or his referendum avarice, the whole package. Worse than BJ? Who can tell? When I think of them, I can’t get over that picture of them in their dress-suits. Poseurs.

However, at least DC had something he called ‘The Prime Minister’s Challenge on Dementia’ – this was an aspiration to improve understanding, teaching, training and support for those living with dementia. He, or whomever advised him to make this a priority understood the place of dementia in our society.

Its impact on premature death.

Its relationship to falls, hip fractures and pain.

The links with hospitalisation and institutionalisation.

The cost to those living with the condition and those supporting.

The rift or rent in relationships in lives caused by the ripples from before and ever onwards after diagnosis.

Dementia-friendly was core to hospital and city design.

Now. Where are we?

Actually, I just Googled it.

I found ‘The Prime Minister’s Challenge 2020

I thought, ‘Oh, I’ve missed something.’

No, it was written in 2015, foreword by DC.

No, dementia has fallen by the wayside.

I remember whenever they established the local Integrated Care System (a copycat idea from America) to bring together partners (in South Yorkshire this is Doncaster, Rotherham, Barnsley, Sheffield and Bassetlaw) to achieve improvements in health and social care at scale.

I was initially excited as dementia was considered a priority, doing some of the stuff included in the 2020 challenge.

Dementia was demoted to a not-priority a year later.

I was on the first working group that was established then, disestablished.

The voices of people living with dementia have been quieted by Covid.

Other priorities have taken central stage.

In the whole of Yorkshire, that is a population of over five million people, only West Yorkshire and Harrogate (Leeds and surrounds) has maintained dementia as a priority. (There are three ICS’s – South Yorkshire and Bassetlaw, West Yorkshire and Harrogate and, Humber Coast and Vale).

Everywhere else it has been subsumed within healthy ageing or some other nebula.

And yet, if you look at the numbers of people who have died from Covid – what proportion of those people have been living with dementia?

If you spend the night in your local A&E or hospital admission ward, how many of your fellow patients will have dementia or cognitive impairment?

If you have dementia and you visit the emergency department how much greater is the chance you will be admitted rather than (appropriately) sent home? What about the time you will spend in hospital (length-of stay)? Your chances of dying (HSMR)? Your chance of never getting home (shifted around the system, onward to 24-hour care)? How do you navigate the technology that has come to save us from Covid – the vaccine, the digital platforms, the online shopping?

I read yesterday that the estimated hourly rate-equivalent for a family carer in the UK is something like £1.50 an hour. (There are over seven million informal carers in the UK, over a million supporting those living with dementia.) (Most are women).

We are trying to recover the system, undo the logjam of unattended outpatient appointments or hip and knee replacements postponed, or hernias and cataracts that have been delayed.

Those living with dementia, mostly because they are silent are overlooked.

As I have said, I don’t know what led DC to make dementia a priority – this is at odds with all the austerity he inflicted on the poor and the disadvantaged and continues to be foisted by his buddies and crones.

And here we are, the work undone, the progress we made where has it gone? Remember the forget-me-not stickers? Where are they now?

What happened to Mallard Ward?

Forgotten.

I write this with no sense of pride, as I have been one of those leaders who should have done more, shouted louder, agitated, demonstrated.

I protested against Brexit, I went on Memory Walks, but the direction of travel has been unchanged.

I hate writing about failure.

To me there is nothing worse than conceding defeat.

Well.

No, I don’t feel we are defeated.

Things won’t disappear.

Lives with be lost, wrecked by dementia and its mismanagement, lack of understanding, lack of prioritisation.

This shout-out is to say that we continue to fight!

Function versus behaviour

In some respects, you might consider the divide between function and behaviour a niche branch of health and social care, alternatively, or, as I hope to explain, this has broader implications for everyday life, into how we interact with one another.

With respect to function, I am talking about the entity of ‘functional illness’ – this is a branch of medicine, psychology and psychiatry that remains poorly understood despite it being a component of Freud’s philosophy over 100 years ago.

What is functional illness?

This is when a patient has a symptom or symptoms which are not caused by physical disease. The list is long; indeed, people can have or produce any symptom you might imagine from pain to weakness, numbness, blindness through vomiting, incontinence and headaches.

Think of any symptom which may have a physical basis and there is likely to be a functional equivalent.

The interpretation for functional illness which I prefer to use relates to the manifestation of psychological symptoms without underlying physical abnormality or disease. In other words, an arm that doesn’t work is physically intact ‘normal’ – the systems that make an arm move – from the brain through the spinal cord to the blood vessels and nociceptors on the skin are all in what might be considered working order – if you place them under a microscope or test how they work, for example, checking nerve impulses, everything will look OK.

Despite everything looking OK – the MRI says ‘normal’ as does the CT, X-ray, biopsy and electrophysiology, if you are the patient, you still find that your arm is not working.

My interpretation, or how I choose to understand and explain to patients, despite the anatomy and physiology being intact (I don’t usually use those words), the arm is not working, and this is often a physical representation of other problems, those frequently being psychological in nature – depression, anxiety, stress.

Sometimes, after providing this explanation the patient will tell me, ‘Doctor, I feel fine, I don’t have anything to worry about, my life is great.’

I will then explain that sometimes we (that is people), don’t see what is affecting or upsetting us and instead of an individual experiencing anxiety, the body (whatever that is (mind/spirit/psyche/soma) opts to represent a symptom in a physical fashion – arm weakness.

As we know from Frankl, suffering is sizeless. What causes one person extreme distress might be considered an inconvenience for another. Yes, suffering and associated symptoms are infinite or they can be finite.

In Freud’s day, the arm weakness might have led to years of intensive Psychoanalysis (with associated high hourly rate of $$$), nowadays you would be hard-pressed to find a therapist or psychiatrist who would take you on; they might undertake an initial assessment – if they can’t find evidence of depression or anxiety, for example, often on a 50 or 100-point Likert scale, they may take you on if they are working privately, and, what the heck, we all have things to talk about or they may explain you don’t meet their criteria and politely send you on your NHS or occupational health way.

For many functional illnesses this is the experience of care – frequently ping-ponging between doctors and therapists (physical and psychological), the more obscure the symptoms and the more obscure the specialist who sees you, the more fanciful the investigations and potential treatments.

Frequently such disorders get better with time, sometimes the weak arm, or rather the normal arm that isn’t working becomes weak because of disuse and a person has a double disorder, this is something the healthcare system also struggles to support although they tend to find it easier to treat a weak arm that is weak than than a weak arm that has normal strength but not working.

Essentially, we don’t know – I was going to write ‘fully’ what causes functional illness, instead I’ll say, ‘We don’t know’ full stop, what causes functional illness, for example, where do the complexities of health – physical and mental stop or overlap? Where is a condition social as opposed to physical (thinking of West-Side Story here & Officer Krupke)?

gee officer krupe

100 years ago, it was thought people died of TB because they had artistic temperaments. Now we know it is the bacillus Mycobacterium tuberculosis. Last year people thought you could catch Covid from 5G telephone towers.

susan sontag

Much of our behaviour and understanding of life is little beyond witchcraft.

When a person has a functional symptom, the onlooker might interpret their situation in one of three ways:

  • The person has a diseased arm because of an associated physical problem – fracture, infection, stroke. When this is the perception, the person or patient is considered unfortunate, they are a victim and not to blame for their situation, they are even offered sympathy and compassion.

 

  • The arm is normal, it is a good, healthy arm, yet it does not work because of past or present psychological or psychiatric trauma or upset (Freud called this hysteria, thinking it was a particularly female condition) – these patients receive sympathy, usually so long as the weak arm or leg or headache or blindness isn’t causing too much inconvenience for another person.

 

  • The arm is normal, the person who says their arm can’t move is ‘putting it on’ maybe looking for sympathy or avoidance of an activity, this is the realm of behavioural, which in some circles might be considered malingering, although I believe this is separate.

 

There is no doubt that some people fake or fain illness – you’ll have seen documentaries where the insurance company secretly film the person claiming disability benefits whose limping leg or damaged arm miraculously recovers as soon as they leave the benefits office.

grandpa

For the most however, it is more complicated than this.

I would probably classify the folk who conduct elaborate pantomimes for financial or other gain to be in the realm of psychopathy or perhaps the psychiatric nether-land of complex PTSD or personality disorder (both of which will take a more qualified person than I to describe.)

For me, ‘behavioural’ is a condition I encounter when dealing with colleagues who appear to apportion a degree of, let’s call it, moral judgment to the behaviour of others.

I find this area most difficult in relation to some of my patients who have dementia.

It is not uncommon for their behaviour, I say this in terms of ‘what they do’ to be described as ‘behavioural’.

I appreciate the last sentence does sound like an obfuscation – I’ll explain.

Picture a made-up old lady, let’s call her Florence.

Florence is 91 years old.

She has Alzheimer’s disease. She has been living at Windy Acres Care Home for the past six months.

Staff find that on occasion, when they offer Florence her meals, she will sit with her eyes closed. When the staff try to encourage or support her, even to the extent of trying to offer her food on a spoon, she keeps her mouth shut. Sometimes she has her eyes screwed tightly closed at the same time.

Nothing works with Florence, distraction, diversion, joking, cajoling, all the old tropes fail. You have to accept that Florence isn’t eating and leave her alone.

Sometimes, if you go away and leave some sandwiches on a plate in her room and return a couple of hours later, they may have disappeared, all with Florence still sitting with eyes and mouth tightly closed.

At other times staff will find that Florence is lying on the floor beside her chair. They never see her falling, they just find her on the ground. Trying to get Florence back in the chair is a struggle; it is as if her body is made of lead, floppy lead that doesn’t try to help the carers or herself.

Most of the time Florence is fine. She is friendly, she jokes with staff, she is able to walk around the care home with or without her walking stick.

In the past Florence has been taken to hospital after being found on the floor – the hospital doctors, despite their blood tests, ECGs, X-rays, CTs and even MRI’s can never find anything wrong.

These ‘funny dos’ are considered part of Florence’s dementia and people move-on.

And this is the thing.

Some of the staff think that Florence is pretending.

‘She knows exactly what she is doing,’ Says one carer, ‘It is behavioural.’

In this context, which I have heard nurses, doctors and therapists use when describing patients, the situation shifts from one of sympathy or understanding to either frustration or acceptance and occasionally judgment.

It is the judgment that is the problem and really why I set out to write all of this.

A doctor or nurse should (in my mind) try to understand, and, when they don’t understand, opt to accept that they do not understand. When people opt to judge, they are applying an assessment based upon their values and experience as to whether something or someone is good or bad.

When a patient is described as behavioural this is often in the context of apportioning a judgment.

‘Florence sometimes puts herself on the floor,’ is what you might hear.

The interpretation of this is Florence somehow intentionally being problematic, causing the staff extra work, in getting her back into her chair or bed (hoist required) or in the compiling of the incident form, ‘Florence has fallen again’.

Florence is not seen as a vulnerable woman with dementia who is in her 90’s, instead as a nuisance, someone who makes more work, someone who doesn’t play by the rules, behave normally or do what they should.

Is it OK for a doctor or nurse to judge a patient?

I guess the answer is that we can’t help judging. We are humans after all (despite the government wanting us to be heroes – a cunning mechanism for tricking people to go above and beyond again and again for a one per cent pay rise).

The thing for me, is that we should not allow our judgments to alter our treatment, support or assessment of patients.

We can judge but only in our own heads, and, more importantly, we need to acknowledge that we are judging and are victims of judgment when we apportion moral blame to those who have situations that are more complex than we can imagine.

And this, what is it?

It is person-centred care.

It is seeing the patient as ourselves.

Walking a mile in their moccasins.

When we are in their shoes, or, slippers, our interpretations change, the focus of our good or bad alters. We seek to understand rather than apportion blame.

Florence isn’t a bad old woman who causes extra work, she is a person, albeit with a terrible neurological disease – dementia, who is as much a victim of her situation as we the staff who are trying to support or care for her.

What does Florence gain from lying on the floor? Some will say she does it for ‘attention’ – an alternative question might be why Florence feels the need to attract attention, why is she willing to lie on the floor, what or how is she thinking?

We don’t always have to apportion blame or find a diagnosis. Sometimes we need to accept the situation for what it is and, move-on.

One day everything will be clear, everything will be explained, perhaps in another hundred or a thousand years, until that time, let’s hold on to our humility.

hysteria

Any resemblance between Florence and a living or dead person is purely coincidental. Florence is a fictional and illustrative patient.

Naked, dead and John Cooper Powys

I am half-way through The Naked and the Dead.

This is the novel Norman Mailer published in 1948 based on his first-hand experiences of World War Two on a made-up South Pacific island of Anopopei.

As I said, I am halfway through.

And struggling a little.

I am at the stage of wondering why I decided to read such a long book – it is a little over 800 pages.

I chose the book as it had been sitting on my shelf for over ten years and I had just finished 4321 by Paul Auster which was another 800 plus book that had been sitting unread for a long time (since 2017).

IMG_4060

I remember buying 4321 and was very excited to read Auster’s most recent book but never managed to get into it.

Well, Lockdown has given me the time and the lack of access to Waterstones (I have opted not to buy books from Amazon or Tesco) I have been working through old stock in my home.

4321 is great, now that I’ve read it. The story is about Ferguson a man with similarities to Auster as he grows-up, falls in and out of love, studies and finds works during the 1950’s, 60’s and 70’s in America. The numbers relate to their being four different stories all with the same characters with different lives or plots – in one the protagonist’s dad dies in a fire in the shop he owns and the character grows-up with fond memories of his dad, in another the dad becomes a successful businessman who divorces his mum and becomes estranged from Ferguson. Four different versions of the same life lived through different timelines.

It is an original concept and tricky to remember what is happening to different people at different times – in one story Ferguson has a step-sister, in another she becomes a step-cousin, in another she doesn’t exist.

If anyone reading this hasn’t read Auster, I suggest you look into Moon Palace or Leviathan (Ideally from Waterstones Online).

Anyway, back to The Naked and the Dead.

I wasn’t planning a book review, more describing my problem.

I am half-way through this book and finding it tough.

IMG_4061

Maybe a little too much description, characters I can’t relate to. I know it is building up to something but a part of me wants to put it aside and read another (I have James Kelman’s How late it was, how late, another old unread copy waiting to go) (He has been a Lockdown discovery (Dirt Road and A Disaffection)).

IMG_4059

I am plodding-on with the book as I know if I stop, I won’t ever finish it.

I have a copy of War and Peace that is half-read.

I half-read it about 20 years ago and it sits on one of my shelves taunting me to this day.

It is a regret I’ll never overcome. An embarrassment.

IMG_4062

A failure. I can’t ever say, ‘I’ve read War and Peace’ (Woody Allen jokes aside), although I guess, ‘I’ve read half of War and Peace’ says something.

I don’t want the same fate to fall TNATD.

In 30 years, I don’t want to be an old man with two large books in his possession which are both half-read.

And yet, time is short.

Should I?

Maybe I could give-up and hide it or donate it to a charity shop? Would anyone notice if I added it to the recycling? This feels like making one wrong much worse.

This seems like cowardice, especially with those brave soldiers facing-off against the Imperial Japanese Army.

Oh, what to do.

I might set myself a future limit.

A Glastonbury Romance is unread on another shelf – Cooper Powys can get lost.

IMG_4058

Ah cannae hear you.

I was in a hall with other people recently.

An innocuous statement.

In the time of Covid, something.

For the past year, like everyone else it has been me and my family.

There was a week in the summer when we went up to Scotland and, sitting in the pub there were others. There was I remember, a drunk woman, loud at the bar. In general however, it has been me, my family, my dog and when I go to the care homes the residents and staff.

All of it mostly quiet.

I am a fan of quiet.

Susan Cain’s book ‘Quiet’ was written for me.

Sometimes I am too quiet. Usually this coincides with a period of brooding or introspection, mind-wandering and anxiety.

My dad was a quiet man.

Looking at photos of his father, Michael, my grandfather who I never met, I am certain he was a quiet guy too.

My maternal grandfather who I knew well and who played a big role in influencing my direction in life was also quiet although his epitaph is ‘gentle-man’.

In the room there were others.

It was the largest face to face gathering I had experienced for a long time.

Perhaps 15.

People, that is, not time.

I won’t say the place or the situation or whether it met or broke Covid regulations as likely, whatever the regulations are now, will be different tomorrow.

Suffice it to say, I kept my distance, didn’t shake hands or eat any of the buffet.

As the only doctor in the room, I had and have a special responsibility not to catch or transmit Covid.

I am tested twice a week and have had my first vaccine, but still.

In this socially distanced space, there were a mixed group of others.

And, for the first time in a year I lapsed into hearing others talking – all at once as extraverts tend to do once permission is granted and, I couldn’t hear what they were saying.

First, it was probably too much, too many people, when I am used to being in a room with no more than perhaps four or at a push five, but also, there were different tones, whispers, comments and asides.

Back in the day, if I struggled to hear someone talking, I would lean-in and cup my ear in their direction, bat-like, it would usually help.

Here I wasn’t leaning-in and to be honest, as no one was talking to me directly, I let it drift.

My hearing is actually OK.

I’ve had it tested and for my age it is adequate. Not supersonic, but good enough to get me through a day talking one on one with patients or colleagues – in person, on the phone, Zoom, Teams or any other form of technology, and, listening to the occasional heart beat or breath sound.

It is more the nature of the noise.

When two or more people are talking and not talking with me, I struggle to tune-in.

Some of this is concentration. Attention. Focus. Interest.

I wonder what it will be like if we are ever back in a time where people gather at parties, social events or tea and coffee breaks.

The hubbub of conversation, of background sound doesn’t work for me.

This likely has a relationship with a neurotic tendency, like tinnitus or free-floating anxiety.

Some of us are designed for the madness of crowds, others for small group or solitary working.

Society tends to celebrate the former.

The masses gathering at protests or sporting events. These are a representation of who we are, of our strength, our might or purpose.

Little old me, alone by the shore doesn’t cut it.

There are lots of us.

Our numbers, that is, of humans are growing all the time.

Me alone on a mountaintop is finite.

A couple of years ago I was trudging across a Derbyshire moor with my family. A troupe of Rabbinical students were walking the other way.

We lapsed into singing The Automatic’s ‘What’s that coming over the hill, Is it a Rabbi…”

I close my eyes and the woodpigeons are calling.

A car drives past my house, its tires humming on the tarmac.

The tap-tap of keyboard clicks accompany this narrative.

The virus that has connected us one to another as humanity, as a species has also pulled us apart.

Our society is grappling, and I can’t hear what everyone is saying.

I will return to my silence.

To my book.

My dog and I negotiating the muddy paths.

shhhh-laurel-hardy-trans

 

favourite patients

It was around 11 am, a message appeared on the computer, ‘Mrs M has asked for Dr Kersh to call her. She is worried about Mr M, she wants a visit’

Mr M is one of my favourite patients.

I am not sure if it is OK for a doctor to have favourites.

I am sure all doctors and nurses gravitate towards certain people, whether because they remind them of a parent or relative or it is just that their manner or smile resonates.

I am sure, if another relative had called, perhaps someone not on my special list, given the urgency, I would have done the same; phoned straight away.

Mrs M sounded worried; she said that her husband wasn’t walking as well as normal, he had back pain, she was concerned he wasn’t drinking enough.

For most doctors, when a home visit is proposed, we run calculations as to the necessity of going to see the patient against other potentially mitigating strategies that might enable us to get away with either advice or a prescription sent direct to the chemist, ‘Sounds like a water infection,’ for example, is easier than going out and prodding the patient’s tummy.

With Covid adding an element of risk to a visit which previously was just an inconvenience, we have found new ways to estimate risk – visiting a patient at home and the potential added information available versus the risk of a remote consultation.

For older people, like most of my patients, using iPhones or iPads to run online consultations is fraught; I have written before about all the difficulties of WiFi, understanding where to point the device, combined with visual and hearing impairment.

Sometimes visits are necessary.

‘I’ll be along in 15 minutes.’

I could tell from Mrs M’s voice that it was not only her husband but she who needed support.

When I arrived, donning the requisite PPE, I sat with my patient’s wife for a few minutes in order to get a more detailed picture of recent events; what had passed since I had last visited in October.

She was concerned about his reduced mobility, diminished diet and fluid intake, he had become delirious, confusing where he was and the location of his bathroom.

Lying in bed I was surprised at how well Mr M looked.

He was pretty much his usual friendly, affable self, wearing PJ’s rather than his normal shirt and tie.

He related his symptoms, I examined, checking his pulse, blood pressure and oxygen levels.

Everything seemed fine.

At some point he had stopped taking the diuretics I had previously prescribed – he wasn’t sure when or why and my diagnosis was a degree of heart failure.

I asked him to re-start the water tablets, said I would arrange a district nurse assessment, booked some blood tests for Monday and would call the following week.

My patient and his wife were reassured.

I went home (the centre of my operations during Covid where I work from our front room).

I was surprised when later that afternoon I received an email from his son thanking me for visiting and relating how grateful he and his family were for my support.

As any doctor or nurse will know, when a patient says, ‘thank you,’ that is appreciated; when someone goes a little further and either sends a card or in this case an email, it is enough to both make your day and a blog!

I replied thanking his son and adding that I would be happy to do anything to support his dad.

I later reflected as to whether my assessment had been accurate; were the crackles I heard in his chest an infection rather than fluid? Should I have prescribed antibiotics? Maybe getting the rapid response nurse to assess on the same day would have been more appropriate?

It is hard to know and this is just one of the many actions and decisions doctors and nurses take every day when assessing and treating patients.

With older people the stakes tend to be higher – a miss-step can be the difference between recovery or deterioration, admission to hospital with all the associated risks to an older person’s independence and function.

There is a fine line between working and treating your patients professionally and caring for them, with the latter, becoming a more substantial risk as we gain greater insight into their lives, increasing our understanding of who they are, where they live, meeting and talking with their children or relatives.

The thickening patchwork of relationships that functions at the centre of life as a community doctor is what compensates from the intensity of hospital business; the richness of experience provides succour.

I did my best.

The merry-go-round

In Rotherham this week (well, Wednesday to Wednesday) we are running something called ‘Rotherham Reset’ which is an attempt to give the entire health and social care system a shake-up to find new ways of working together, collaborating, undoing the knots of pathways and process to help pick ourselves (and our different services up) and get moving again.

We are just seeing the start of better times in the hospital with the numbers of inpatients who have Covid dropping for the first time in months. Still many patients are living in uncertainty because of cancelled operations or fear because of the ongoing menace of Covid that dominates all our lives.

Here is an attempt to re-frame a little part of the pathway and perhaps take some steps in the direction of talking, engaging and squeezing out of our silos.

 It used to be said that getting in to hospital was easy – all you had to do was be old and fall over.

The world has changed a little over recent years and thanks to the work of teams in the emergency department as well as staff in the community, more people are being turned-around at the doors of ED or being supported in their own homes.

Despite these changes, it has always been difficult to leave hospital, especially if you are old and you have been falling.

Interestingly, hospital can be the least-safe place for older people, with home being what most want and with far fewer hazards such as the risk of institutionalisation, over-medicalisation, polypharmacy, falls and a host of other healthcare associated ills.

Getting out of hospital requires, at least in the UK in 2021, a doctor, often someone with lots of experience to determine you are ‘medically fit for discharge’ – translated into ‘MFFD’ or as I recently discovered ‘MSFD’ which is perhaps more accurate as ‘stable for discharge’ this latter acronym is used, as for many of our patients, especially those with severe frailty and multi-morbidity ‘well’ is only an aspiration.

The problem with our system is that MFFD or MSFD is dependent upon the doctor’s knowledge of how well or how sick a person can be to be allowed home.

Sometimes we have to accept that better is more achievable than well particularly when there is little room to improve, for example when someone has a condition that is deteriorating.

To know how unwell you can be to be at home requires a knowledge and understanding of all the services that can support a person in their home.

Rotherham has a fantastic community service, which is for the most a replica of our acute hospital without walls serving a population of 260,000.

Patients in the community are supported by GPs, community and district nurses and matrons, teams specialising in rehabilitation, continence, neurological, cardiac and respiratory disorders, there are even consultants like me who try to do our bit.

Essentially, you can be very unwell and be well supported outside of hospital.

We need our hospital teams to link-in with their community counterparts, as a quick phone-call to a patient’s community matron or GP can unravel confusion, avoid unnecessary tests and treatments and reduce length of stay; this interaction works both ways – we need more integration!

This blog has been written to coincide with our Rotherham Reset week.

Let’s re-set hospital and community, shake up our relationships and discover that together we can provide care that outstrips anything we can do alone.

Dr Rod Kersh, Consultant Community Physician and Divisional Director of Community Services

Pressure ulcers (bedsores) & PCHC

I was recently involved in the care of a patient who developed a pressure ulcer.

Behind this seemingly innocuous sentence lurks a whole raft of issues, concerns and aspects of modern healthcare.

More surprisingly perhaps, I have spoken with several doctors who believe that pressure ulcers, their care, treatment and avoidance are not a medical thing, assuming that this aspect of patient support is just for nurses, with perhaps the intervention of a surgeon if things get particularly awful.

At its core is the divide between organ-specific, super-specialised medicine and the more holistic model of care, treatment and support that I teach and to which I aspire.

If you are a doctor who spends all their time focusing on the minutiae of, let’s say, eye surgery or a sub-division of a sub-division of lung or heart disease, it is easy to become misled into seeing your area of expertise as being a world entire unto itself; it is easy to miss the person.

There are however many non-specialists who, whether because of the pressure to address a raft of competing demands or a natural tendency to an over-specific focus on short-term fixes fail to see the bigger picture.

(When I think this, I am always taken-back to the scene at the beginning of Enter the Dragon where Bruce Lee, Shaolin Master slaps his student on the head for gazing at his finger and missing ‘all the heavenly glory’.)

finger

Back to the problem.

What is a pressure ulcer?

It is when an area of skin, most commonly one sitting over what is called a ‘bony prominence’ – the sticky-out or bony parts of our skeletons are in contact with a surface for too long, the result being a critical interruption to blood supply that causes damage to the skin and consequent potential death of cells.

The bonier the prominence, the less pressure or time required for the damage.

In susceptible people an ulcer can begin in 20 minutes.

Why my readers don’t tend to get pressure ulcers, even when spending too long watching repeats of The Office is because we are a) able to move around and reposition ourselves if uncomfortable, b) have in the most, healthy skin that is less susceptible to injury and c) have a reasonable blood supply that keeps oxygenated blood flowing to our skin and all over our body.

This is probably all you need to know about pressure ulcers.

There is a whole science attached to the assessment of ulcers, their grading and treatment.

Here I will just look at the causes which are the same as the ways to prevent.

It is easy, in a minimalist sense to revert to my earlier notion that it is the nurse’s job to stop pressure ulcers – indeed, when such ulcers develop and there is a culprit to be found, it is often poor nursing care that is held responsible (or far more often, poor documentation of nursing care).

I don’t want to labour the point and prefer to focus on what nurses, doctors, therapists and everyone else can do to avoid pressure ulcers, which are, for the most, painful, uncomfortable and far easier to avoid than treat.

What can a doctor do?

Returning to the physics, pressure ulcers develop when the pressure on the part of a body is greater than the pressure of blood flowing to the skin.

We all know from standing on drawing-pins, that pressure is the result of an equation:

Pressure = Force/Area

This means, if the area is smaller, you need less force to create a bigger pressure.

This is where the bony-prominences come-in.

Many of you, me included, might not have too many bony prominences, this being because we are, well, fat.

Fat is a great defence against pressure ulcers.

Unfortunately, many of our patients, and particularly those who are most vulnerable or susceptible are not fat.

Many of the patients I care for, especially those in their late 80’s or 90’s weigh less than 50Kg, some are less than 40. This is between 8 or 6 Stone for those of you who use those measures.

If you weigh 40Kg and you are anything more than a very small person you will be very thin. Bits will stick out.

A picture of the body parts that most commonly stick-out is below.

310px-Pressure_ulcer_points.svg

Once a person reaches these extremes of body weight, there is little you can do to build them up. If you are young and very malnourished, with years of eating ahead this is doable, if you are in the last year or two of life, the best that can be achieved is maintenance, although often, the cause of your low body-weight – dementia or other systemic diseases such as Parkinson’s, diabetes, cancer or heart disease do not get better as time passes.

This is the area part of the equation.

Bony prominences provide a very small area, requiring little force to interrupt blood supply that leads to all the changes that happen when cells of an individual’s body are starved of oxygen, glucose and other nutrients – they die.

If we can’t make our patients fat, or at least maintian a healthy body weight (despite the valiant efforts of dieticians, nurses, carers and family to encourage people to eat) how do we prevent ulcers?

Well, this has to do with force.

We can reduce the force applied by providing padding or special mattresses or helping the person to move (in healthcare we call this ‘reposition’) – you can encourage those who can, to stand every so often.

And, I guess, you could interpret some of this as being the work of a nurse.

Yet, as I have mentioned on countless occasions, modern healthcare is far too complicated to be left to one person or discipline, the picture of the situation, the plans for treatment and care require everyone who works with that patient to contribute, both from their own narrow sphere of experience as well as taking the viewpoint of the other, either the patient or the other member of the team.

A doctor or a physiotherapist who sees a patient on too hard a bed or who is  in too small a bed, should flag this and question.

Anyway, if it is just a matter of mattress or bed or chair what is there for the doctor to do?

Lots!

If my patient who perhaps has dementia is restless or at risk of falling because they get up from their chair without realising that they can’t stand unaided, I could prescribe a sedative, a trivial dose of Lorazepam or Diazepam.

This would for the most be considered the wrong thing, at least first-off, as the correct answer, were this an exam question, would be to try to find out why the person is restless – yes, all the basics that make you and me want to move – hunger, boredom, pain, frustration, fear, anxiety, need for the toilet and so on.

If I knock my patient out, I might stop them falling in the short-term, I may also stop them moving which allows those bony bits to remain exposed. Also, sleeping or drowsy patient is less likely to eat, leading to a drop in their weight, they are less likely to drink, leading to more drowsiness and even a fall in blood pressure, which if you plug-in the above equation, leads to reduced blood flow to areas that are perhaps ‘at risk’ and all that follows.

Sometimes if a patient is very anxious, treatment for that anxiety is appropriate, this may make a person less restless; I guess what I am saying is think before you risk stopping someone moving.

Another doctor might feel they are doing a good job prescribing antihypertensives, that is medicines that lower and control blood pressure, yet, if you artificially lower blood pressure you might take the blood supply to that critical area to a level at which the skin is starved of the oxygen that keeps it healthy.

You might be another doctor who is happy they have followed every single line of NICE guidance, provided primary or secondary prevention for every disease or condition the patient has or has had.

Sometimes too many medicines can make a patient feel sick, can make them feel less like eating or drinking, can lead to constipation or exhaustion that fuels the cycle.

Another situation might be to not notice the level of exhaustion of the patient and send them for all sorts of therapy, investigations, tests and treatments, which renders them too tired to eat, get out of bed or do anything, again, it goes on.

Many of our patients are dying. Nor recognising this deterioration, which can be very slow, is common in healthcare, with patients subjected to all the above without realising that all of this is hastening not delaying death.

You see, it can get quite medical.

I am often concerned that nurses, colleagues and patients see me as ineffective as I am less likely to reach for an MRI request and more likely to fuss over how much they have had to drink.

For many patients the best we can do is get them some decent, tasty food.

I realise I have written almost two thousand words and I haven’t mentioned Covid.

Well, we are vaccinating like crazy.

The vaccine is not a panacea – we don’t even know the level of protection it offers and, we shouldn’t forget about eating and drinking that are the mainstay of keeping our patients well.

Just because I have been jabbed/jagged doesn’t mean I can forget about everything else. In a way the vaccine has put some of us at greater risk as our level of alertness or caution has waned.

If one of my patients is saved from Covid yet develops a pressure ulcer are they better-off?

Pressure ulcers may not be as deadly as Covid although the treatment, the pain, the repositioning (day and night), dressing changes and all the rest is equally bad.

Will this blog have resulted in a doctor changing their behaviour? Will someone, the next time they call the hospital to enquire about their mum or dad ask about pressure ulcer prevention or care?

I don’t know.

You see, there is really so much to know and do.

That’s why my go-to is the mantra of person-centred holistic care – you see, if that this your aspiration, even if you forget to remember every single component of the holistic-whole, you are at least moving in the right direction.

I don’t want to knock my fellow super-specialists – I might need them one day. Yet, a super-specialist who is an adherent of PCHC is likely to be a better doctor, nurse, pharmacist, teacher, or whatever.

PCHC.

And my patient, she died soon after she was found to have developed a pressure ulcer.

I was not sufficiently involved in her care to say whether her dying was acknowledged as the issue – with all that involves – getting the family in, stopping the bad medicines, determining and facilitating ways to provide a kind, caring natural death, or if the ulcer became the focus of attention.

There is a thin line between doing things right and doing the right thing.

Most of us want the right thing to be done right.

State of frustration

I wanted to begin by discussing my recent practice FB post. I called it >very frustrating situation<. That was the best I could think at the time.

What is or has been frustrating?

Well, I won’t go on too much about Covid (lie).

The vaccine has been rolling out over the past month.

And, in a spirit of openness I will let you know I have had one of the jabs* – the mRNA. (I struggle to remember the company names, which, when you say the ‘Astra-Zeneca…’ is really very good advertising).

Anyway.

The frustration is that lots of people don’t know when it will be their turn.

I guess this state of frustration is better than the hopelessness of many in the developing world (notably, most of Africa) as, the best they can wish for is a mild form of the disease that conveys some form of immunity.

When I received my vaccine, I was aware as to how incredibly lucky I was – I thought, of the over eight billion humans on the planet, I was one of the tiny percent benefiting from this component of modern medicine.

And yes, most people in the UK have not yet had the vaccine.

In Rotherham, every healthcare worker who wants the vaccine has had it already. This is an incredible achievement. It is not representative of the country.

Both my brothers have had the vaccine. They are older than me and I am grateful that they have ticked whatever boxes required. My sister who is also older although not as old as my brothers has not. She is a schoolteacher and again, yes, this is a frustration as to why teachers are not being prioritised; I can wear facemask and visor and keep my patients at a distance when necessary – you can’t do the same with little children who we know (and have known since the early days of the pandemic) are one of the most important vectors of infection.

The frustration I described in my FB post related to my feelings for our patients.

All of the patients in our local care home have been vaccinated, as have the staff. Again, this is ahead of many areas of the UK, which is brilliant.

Those who are over 70, or 80 (I’ve lost track) who can get to the vaccine centre have been getting their jabs too.

People who are unable to leave their houses are a more difficult group and, as I type, teams of vaccinating nurses are working street by street, a doing-good militia, knocking on doors or negotiating key safes in order to jab.

It takes a few minutes to jab; if someone is alone in their home you have to remain with the patient in case they have a reaction. This slows the process – let alone, the palaver of taking off cardigans, jumpers and shirts that are often layered in the under-heated homes of older people.

Not everyone can have a jab at once (it is being rolled-out geographically with a finite number of vaccinators) and there are staff working feverishly behind the scenes phoning-up patients, letting them know someone will visit and on which day.

Jenner would be delighted.

Yet, if you are my sister, or perhaps in one of the ‘at risk groups’ – which range all the way from those who can’t or have not stepped over their front doors since last March (are you taking Vitamin D supplements?) through to folk like me who aren’t very fit and have asthma and are really not sure in our middle-age what effect Covid might have, you are in limbo.

At the core of being human, or at least holding-on to a degree of sanity is the concept of ‘locus of control’ – the notion that we can influence the world around us.

I can scratch if itchy, get out of bed, eat, drink, laugh when I want; all these infinite complexities of being alive contribute to my sense of self and wellbeing.

Take something away and I will struggle.

Take everything away and I will be in free-fall.

Essentially, there is no control over when those many millions who should have the jab will get it – it is too big and complex a task understanding the ins and outs of when and where.

And this is the FB post.

Patients have been going online to establish when they can get their jab.

Here is what happens:

screenshot-2021-01-30-at-08.43.11-1

In frustration they are calling the surgery.

We don’t have any answers, and, I guess, some patients think we should.

Reception staff who field the calls are under pressure to answer the phone; patients are calling with queries that cannot be answered.

It is I believe a reasonable truism, if you work in the NHS, or, let’s say, health and social care, you do so because you want to, or you enjoy helping people.

Saying, ‘Sorry, I can’t help,’ goes against the grain.

If there are even just five or 10 per cent more calls to the surgery this makes phone lines even more difficult to answer or have answered.

This is frustrating to patients who want to talk about their pain or asthma or diabetes.

In Yiddish this is called a ‘mishegas’ which translates into ‘a crazy, mixed-up state’ or in Hebrew, ‘balagan’** which is ‘bring to the garden’ – a more obscure sense of chaos.

Maybe that would have been a more appropriate title.

The answer?

My post likely changed behaviour very little.

We have re-recorded the message you hear when you ring the surgery.

Heck, even when you get the vaccine the world doesn’t change (and this, setting aside the UK gamble, contradicted by evidence from Israel, that one jab for many is better than two for few) – personally I hope it confers me some protection, yet I am still double-masking and gowning and staying close to home.

It won’t do me or anyone any good if I say either ‘trust the system’ or ‘be patient’ – both seem overused tropes that don’t seem to get you anywhere.

Maybe better to reflect on the situation in one of those African states all of which will have people just like you and me who are either old, living with heart disease or asthma, worrying or worried-about, where, compared to our four million vaccinated population only the president has been jabbed.

(This did not really happen. Cows’ heads did not emerge from the bodies of people newly inoculated against smallpox. But fear of the vaccine was so widespread that it prompted British satirist James Gillray to create this spoof in 1802.)

*A Scotsman has lived in England too long when he thinks of jabs more naturally than jags.

**I stand corrected by my big double-vaccined brother… https://balagan.info/what-is-balagan (this is what I get for over-egging his oldness 😄)

Where the Crawdads sing.

Think of them as happy lobsters,

Oversized claws

Clapping the air,

Beady eyes

Checking out

The place

In case

Of predators

Or prey.

 

Just finished Delia Owens’

Where the Crawdads sing.

 

The best book I have read in as long as I can remember.

 

And, yes, I finished Shuggie Bain a few days ago and loved that too.

 

This was in a different class.

 

Perhaps not literature,

It captured,

Held me in its grasp.

In its craw.

 

I’ll say no more.

 

Please read.

delia owens 2017 credit: dawn marie tucker Where the Crawdads Sing by Delia Owens G.P. Putnam’s Sons

Shuggie Bain; not a book review

This afternoon I finished Shuggie Bain by Douglas Stewart.

It took me back.

Returned me to Glasgow.

Shuggie, real name Hugh.

Shuggie, son of Shug, also Hugh.

Outsider.

It is a wonderful poetic chaos of characters, moods and emotions.

It is poverty and pain, pride, hunger and exhaustion.

Sitting in Queen’s Park with empty can of lager,

Hiding in the bushes at Pollock.

Young boy trying to defend his mum, caught in the evils of greed and addiction, stale breath and unwashed clothes, blackened damp climbing the walls, collecting in corners behind broken windows and rattling doors.

Reading the book was an experience.

I won’t tell you the plot.

It left me lonely; it reminded me of early summer postal rounds in the Gorbals, double-deckers moist with condensation, sawdust on the butcher’s floor.

Mince pies and too salty chips, sickly buns before school, gobs of spit and dark winter nights.

The atmosphere of a forgotten world brought into focus.

Thank you for the writing.

What can I say, please read!

Covid patients

I hate going over what I have already written.

I guess part of the problem is that I have written so much that it is impossible for most people to have read everything (except perhaps some close family and Freda).

Well, it came to me this morning.

Actually, it is something I hear most days.

Covid patients.

Sure, sounds innocuous, yet it goes to the very core of my approach to care and being a doctor.

It is the person-centred is-ness of who a person is.

Is the person with the disease or the disease with the person?

Is it patient with Covid or, Covid with a patient?

I can guarantee if you listen-in to the news, any current affairs programme or likely any NHS management meeting, the latter will be the term used.

The hospital is full of Covid patients, we can’t cope with more Covid patients in A&E, the number of Covid patients occupying hospital beds is…

An so it goes.

This approach to person-centred care, where we have the person, the individual with all that is good and bad associated with them at the very core of our actions is also directly linked with a person’s own mental health and wellbeing.

In the field of Mindfulness, if you ask Jon Kabat-Zinn, ‘Who are you?’ His response will relate to all this is his past, his present and his future; the infinitesimal moments, shades, gestures, ups, downs and quirks that are a person’s entire being.

You might be anxious or depressed or worried.

This is an experience in the moment; you are bigger, better and more complex.

People are never good, bad, nasty or nice; there are always nuances, complexities.

And so too with health.

What part of the person has Covid?

What percentage of their bodily mass is Covid?

How many cells?

People say there are more bacteria in our gut than cells in our body; I am not sure how true this is – I don’t think I am ready to say I am faeces.

When you see the disease; diabetic patient, cancer patient, or you move into even more functional terms, ‘the appendix’ the ‘blocked LCA’ you are in trouble.

No matter the skill of the technician, if you remove the art, the human from the interaction, everything is diminished.

You might say, so what?

Let’s not worry about Covid this or that.

There are bigger fish to fry.

No.

You see, once you let these small things slip, once you overlook the subtleties of language you are in trouble.

Another old blog talks about the poem by the Late Heathcote Williams – Mokusatsu, which describes the risk of imprecise language,

‘A hundred and seventy-five thousand people

Either stood about in helpless confusion

Or were turned into radioactive dust’

I’m not suggesting that the wrong way around of a couple of words is the direct cause of a disaster, yet we know that all bad things, all slips in standards start somewhere; the Swiss-Cheese of clinical error has an original hole.

So, let’s tidy-up our language.

Let’s move from

Covid patient

To

Patient with Covid

Or

*Rod, who has Covid

Or

Rod who has Covid, has a black and white dog…

And so on.

*Thankfully, I still haven’t caught Covid

How do you reduce the risk of Covid over Christmas?

Recently, I have been talking with a few people about their plans for Christmas.

I am not entirely sure about the latest government advice as to what is allowed or recommended. To be honest, I stopped listening to the government months ago – I tend to go with the flow and make up my own mind as to what is right or wrong, what I should or shouldn’t do, after all, what the heck does the government know about me?

Sure, there have been the lockdowns and I have diligently remained indoors or out of sight of crowds, then again, I have never been a fan of crowds or busy places so essentially, I have been doing what I always do.

It must be hell to be a partygirl or boy during Covid. You have my sympathy.

Anyway, back on topic.

Christmas will be upon us in a couple of weeks and people are making plans – here are some of the questions that have arisen…

‘My mum is being allowed out of her care home on Christmas day, what should we do?’

‘We are allowed to see dad in the nursing home at Christmas, should I visit?’

‘My son is being allowed home from university for Christmas, should he see my dad?’

‘It’s holidays, should I visit my brother/sister/friend in England/Wales/Scotland/NI?’

Again, I don’t know what the rules say, this is what I think:

Care Home residents –

Putting aside all the issues relating to the derogation of human rights of people living in care homes in the UK, the reality is that this is a group at very high risk of either dying or spreading Covid – in my experience, given the living conditions in care homes and the way care is provided and work done, if one resident gets Covid, often before you know it (some of this relating to asymptomatic carriage), half a dozen then all the residents and the staff are infected.

Mostly when staff are infected, they pull-through; when residents are infected, anywhere between a quarter and half appear to die.

Covid in care homes is therefore awful.

As to the visiting families in different parts of the country, you probably have to split that into those who are at risk of contracting Covid and dying and the overall stirring up of infectivity that will likely happen – most people are expecting our national rates to increase in the New Year with a third wave. We will see.

So, what do you do?

Well, you could just stay put.

Not see mum, dad, brother or sister.

Inactivity is always an option and, sure, what do you have to lose?

For most, probably not very much, for others, this might be the ‘last Christmas’ either because your mum, dad, uncle might be in their last year of life or less dramatically, next year your kids might have moved on and be doing different things.

We all want to seize the moment, is it worth it?

What I recommend…

In the turgid world of health and social care there is the concept of an Individualised Risk Assessment (they do this in schools and regular workplaces too – most readers should therefore be familiar with the concept).

This is saying that my risk is likely different to your risk, both in terms of my spreading or catching Covid and each of us should probably do things differently.

This is where the government advice often falls-apart as they provide national or regional guidance.

I don’t want to say I told you so, but a theme of my blogs for the past six years has been person-centred care – this is care tailored for the individual; it’s ironic that person-centred risk assessments are what we all need.

Anyway, here is some guidance:

  1. People coming back from university are being tested using lateral flow devices – these (as far as I know as I haven’t used one yet) are the same principle as pregnancy tests; a little hand-held device you mix with a swab taken from your nose and throat.

In my experience pregnancy tests tend to be very sensitive (they pick-up almost everyone who is pregnant) and specific (if they are positive you are probably pregnant and not something else).

There has been lots of discussion as to the sensitivity and specificity of the lateral flow devices – I am not sure anyone really knows; there have been figures ranging from 50 to 100%. The PCR tests which are done in Covid testing units and hospitals are upwards of 70% sensitive and highly specific.

Part of the reason for the variation in figures is the virus may or not be present in certain people in sufficient numbers as to test positive although more commonly, given the test relies on a swab or a little brush being inserted into your throat and nose by a nurse, a swabber or the person taking the test, the variation in success of the swabbing technique is a highly uncontrolled variable.

Anyway.

If your test is positive you either have active Covid – that is within 14 days of infection or you have had Covid – the suggested time for the virus particles to be detected is up to 90 days after infection.

And, if you have tested positive for Covid I would not have granny or grand-dad round for Christmas dinner (you can see them outdoors, maybe with you mask wearing and no hugs and, no shared pigs in blankets).

2. Now, if you are back from university and you have tested negative, you are in a better place, yet you might still have the virus either incubating or you might not have had a valid test (false negative).

You could do what my kids are planning and that is to quarantine themselves before Christmas so they can see their grandparents; this is not straightforward but a good demonstration of love.

How many of my readers realise that our older care home residents after a trip to hospital are quarantined in their rooms for two weeks after the event? If it is OK for them, maybe younger people should try it.

3. If you have tested negative and whether you quarantine or not, as part of your own risk assessment I would then take some additional measures, essentially looking to whether you have symptoms:

Has your sense of smell gone?

Are you coughing?

Do you have a fever?

Do you feel ill or off colour?

Again, you find yourself with these symptoms I would stay away and think about being tested.

4. You want to have grandma over for Christmas dinner – should you? I worry about this as it essentially questions the behaviours of all the different people in the house; some of us (me) are quite reclusive at the best of times and beyond the time I actually spend with patients who have Covid I tend not to associate with others; it is hard to guarantee this for all the attendees. Young people like to hang out with others and even if infected with Covid are mostly without symptoms.

You might ask, would I be happy to drink out of the same cup of coffee as uncle Albert or Cousin Jane? Would I be happy to use the same cutlery, maybe eat their leftover turkey?

5. What to do if you aren’t sure, do you call it all off? I have hated the way those people in care homes have been locked out of society. I have seen people deteriorating and dying because of lack of access to their families. As I have written before, many of the carers I work with every day are amazing individuals; they go above and beyond to provide the best, most sensitive care and support to the residents. They aren’t family however and despite family not being a guarantee of love, the mum or dad bond is unique.

I have been going-on for over a thousand words; has what I have written helped?

I don’t want to say more, and I don’t want to go into the minutiae of each person’s experience.

My closing message I feel is to weigh up the pros and cons, don’t rush in, balance your feelings with the practicalities of test results, exposure and symptoms.

You can still hold hands if someone is wearing rubber gloves; you can still laugh or smile wearing a face mask.

Take care.

Together, we live in dementia.

It takes courage to tell others you have been turned inside out.

It takes nerve.

Perhaps even more so to discuss such topics

Live on air

Via a perverse digital medium.

That is what happened on Thursday.

 

Three women,

Each of whom have or had partners affected not just by early onset dementia, that is, sometimes called working age, as it affects those who are younger than 65, they also have had to endure Covid.

Covid has been awful for all of us; some more than others.

I have often thought, it likely to be worst for those who are living on the fringes, those who are just about coping, who this time last year were worrying perhaps about the outcome of their job prospects, the results of cancer treatment, financial instability.

For all these people, Covid has taken a difficult time, a painful situation and made it worse.

Living with someone who has dementia, particularly when it happens before its time – for, we mostly expect this to be a condition of older people, not a surprise guest as you approach retirement or just as your kids leave home and you are considering a bit of ‘us time’, is very hard.

I have heard the stories.

The attempts to reach a diagnosis – years can pass with the spouse knowing that there is something very wrong, yet doctors and psychologists reassuring that it is only depression, or anxiety, or life; the encounters with friends or family who presume that John or Jack or James have just become moody or surly and this their choice and those, who later learn the facts who can’t face the silences, who are uncomfortable, who keep their distance – with a bizarre irony being that dementia is not something you can catch, yet with Covid, the opposite seems to bring people together, or at least a desire to flout the common sense.

In this talk, which was part of our regular Conversations about Covid, an idea we had a few months ago, to bring people together to talk about the ways in which Covid has affected those living with or affected by dementia during the pandemic, three women presented; they talked about their experiences supporting their husbands.

And to be honest, the person who most affected me, Linda, and here I am using her real name as she is ‘public’ and has her own blog, which you can find here, discussed the let’s call it for what it is, torment of her husband living with dementia during Covid.

Dementia, as I have discussed before can be and for much of the condition is awful; it robs an individual of their identity, personality, memories, it defeats their future, distorts relationships and moods.

For most although not all this doesn’t happen all at once, there is often a gradual creep, an erosion over time, months and sometimes years, to the extent that it is often unnoticed by those closest to that individual.

Yet, it marches onward, it chips away at the person.

In the past 20 odd years there has been very little progress at finding any meaningful treatment for dementia; the handful of drugs available often pay lip-service to the decline, perhaps adding a few months of independent living to those fortunate enough to respond; perhaps a ray of light might be the progress that has taken place globally to find a vaccine for Covid which was initially suggested would take a decade, might cross-over to dementia research; possibly not.

There is therefore little you can do to stop the decline, that is, in the form of pills; you can do lots beyond healthcare to maintain a person – ensuring regular and meaningful social contact, work with music and art, reminiscence, physical activity, nutrition, humour, touch.

Covid has made much of this difficult.

Parents and grandparents locked away from their families.

For those others, the unaffected let’s call them, the majority, they can cope with six or even 12 months separation; the children might have grown, things happened and so on, yet in this time mostly little will have changed. They keep in touch on the phone or FaceTime or whatever; their time is perceived as infinite.

Yet, when living with a life-limiting condition, one which results in daily, often imperceptible decline, those days and weeks are something.

When phones and video don’t necessarily fill the gap, or, because of the dementia or the additional burdens of hearing or visual impairment make them impossible to use, the separation becomes impossible.

Years ago, on my old ward in Doncaster, I remember putting on the wall a sign that reminded staff to talk with patients, not just transact, but chat, converse, as this was and is one of the most effective means of maintaining wellbeing – likely not just in dementia, in humanity in general; showing or taking the time and interest in another conveys a message that can be transcendent.

Covid has squashed that.

I have reached this point in the narrative and not mentioned care homes, as it is these establishments that have been both used as political ping-pong balls, battered by accusation and recrimination, affected by lack of support, inadequate training, PPE and all the rest, where outbreaks of Covid, particularly the first time, although on this wave also where they have been held-up and challenged.

You see, if you attack anyone or anything, a person, an organisation or an establishment, they adopt a defensive position (if they can’t run away or fight, which care homes cannot do), and this is what has happened.

Families have been locked out of the homes.

First, we accepted the perversion of ‘window’ or drive-by visits, then with the lockdown even these were stopped.

Families, that is, husbands, wives, sons and daughters have been forcibly separated because of government decree.

A basic human right – the right to family life has been bolloxed.

I know care home residents who have been cut-off from their families, where prior to the pandemic every day, Sadie or Joe or Frank would have their husbands or sons or daughters visiting them, this ended back in March.

Gone.

Fin.

And I have witnessed the decline.

I have been there; first on video myself and now, thanks to regular Covid screens in person, weekly. I have witnessed the fading, I have seen the bruises, the thinning skin, the misting of person and personality that is associated with losing connection with your roots, with your family, with, and not to be melodramatic, your heart.

For those ‘lucky’ enough, and, I say this with irony, to have their loved ones recognised to be dying, for most, that is in the last months, weeks or days or life, the restrictions are lifted, and visits are allowed.

For most this is not the reality; their death or their deterioration is imperceptible.

More than the torment of now, I personally dread the return of relatives, whenever the vaccine or the testing works, for they will see people diminished by the attempts of professional carers and nurses to maintain residents.

Residents.

Those who reside.

There may be affection, even love through a formal lens, yet the hand holding, the eye contact, the shared experiences are absent.

The conversation, perhaps the repeated talks about summer holidays or peculiar life events are absent, and with absence, the neurones fade, the person disconnects from the past and they are left, eating, drinking, sure, but the shell becomes more substantial than the essence.

And it was in the conversation we had on Thursday where again I heard about the family lockouts from care homes, the pointless restrictions, which sound awfully like petty cruelties.

If a care home manager opts to deny a resident a medically prescribed treatment – aspirin for example, all hell of social care safeguarding will befall them, yet, deny access to their wife’s touch and that is approved.

We, and, that is me, and you, have allowed this dehumanisation.

We have immersed ourselves in Netflix when this catastrophe has been unfolding.

In the summer there were protests in support of Black Lives Matter which I applauded; in the autumn there is no one shouting that, well, Lives Matter.

We look at the statistics which tick-off the numbers of people dying from Covid; daily I receive to my inbox the numbers occupying hospital beds, the rate or infection and so on; yet, underneath all of this are the silent sufferers – a term I don’t use lightly, particularly in the world of dementia, yet, that is what we have induced.

Listening to the women, discuss their experiences, their pain, the disconnection from their husbands, I felt more than anything a sense of shame on me and probably others.

You see, a week or two, even a month without aspirin will likely make no difference to an individual; as I have discussed before, there are many people living in the UK who are taking actively harmful medicines, drug holidays for them would likely be beneficial; remove loving human relationships for a day or a week and the consequences are catastrophic.

And, did you know, for all those who have been in hospital during Covid, those who have dementia, despite the risk to life and limb of hospitalisation, ironically, families have been allowed to visit during that time?

A fortnight in hospital and you get visiting rights; back home, to the home, to the place of care and these cease. And worse, after a period in hospital and their return to the home the isolation begins. They must remain for 14 days locked in their rooms. Quarantine this is called; not the Italian 40 days, but enough and proportionately longer for someone in their last year of life to minimise the risk of spread to others.

Take a person, they needn’t be that old, given them a life limiting illness, years before their time, separate them from the people they depend on most for their sense of self and wellbeing, lock them in solitary confinement for a fortnight.

It sounds like a dystopia. It sounds like a crap film that you couldn’t watch on Netflix. It is playing out however down the road in a care home near you.

What should we do?

Who wants to do something?

Our Conversation was supported by TiDE – Together in Dementia Everyday – a National Charity supporting those living with or affected by dementia;

Today they took my dog’s womb.

The vet,

Friendly young woman in dark blue scrubs

Face mask and clipboard,

Took me through

The ins and outs of the procedure.

Operation to render my dog

Sterile.

/

My last dog Maisie

Was also spayed

Although

I seem to have lost the memory.

/

Now, Stella,

As she cowers,

Under my desk,

Beside the radiator

Collar of shame

Interfering with her perambulation.

/

I hear her moving.

/

I’ve offered her treats of chicken hearts.

She isn’t biting.

/

It might take a while before she forgives me.

/

The morning vet interaction

Took me back in time, over 40 years,

To when I was a tot

And my mum took me to nursery.

/

In those days

Before children acquired relevance or importance

My mum would take me

To the front door and hand me over.

/

Mummies weren’t allowed inside.

/

A dark Glasgow semi;

/

Thinking back,

On those who ran the place,

faceless.

distorted

comic-book shadows.

/

It was my first encounter with the system.

So, today I was on a Cabinet Office call about care homes.

This was me and a few others sharing our experiences of the pandemic and how it has affected those living in care homes as well as the staff providing the care and the relatives who for the most have been locked out.

The two guys were from the military; they have been tasked with meeting lots of different people and compiling a report which I imagine will then be read by Cabinet Ministers.

That, I presume, is how things work.

I’d have thought it better if the people who want to know what is what – the politicians came and asked me and my colleagues directly, after all, we are mostly available and if say, our local MP or the Health Secretary wanted a little of our time we would likely oblige.

Anyway, that is how it is.

People who don’t know things, asking people who know things to tell other people who don’t know things, things.

You can see where the whispers might fragment.

The two guys – one was in the army, the other from the RAF.

I don’t or can’t tell them apart – they are all geezers who like dressing up in uniforms and singing about the queen. Hey ho. That’s the world we live in.

I’m not sure what I was expecting when I agreed to participate.

I remember a few years ago in Doncaster, Ed Miliband when he was leader of the Opposition came to visit the rehabilitation hospital we had just opened. It was funny; I wasn’t invited to speak with him despite at the time being one of the local leaders (I had already started my long, slow fall out of favour with those in authority) – I was one of those presented in a line for him to shake hands and mutter niceties.

Travelling back further in time, it must have been around 2001, I was invited to go to Number 10.

Blair was the P.M. and this was before 9/11, the Gulf War and all the subsequent shenanigans.

Now, those who know me well, know that I have never been much for hierarchy or position and it was an odd experience to receive the invite; I went along anyway, as they say, for the craic.

Suffice it to say I drank too much wine and the security guys didn’t appreciate my wandering into the back offices. Tony stood on a little box and we all clapped. The highlight had been the hours preceding spent on Charing Cross Road book-buying.

On the whole I am not a fan of politicians or civil servants who run around mechanising government.

Person-centred politician.

Funny, not something I have ever heard.

Maybe they should consider adopting this philosophy as a way to understand and do, a way to bring about change or improvement; doing with rather than to, giving rather than taking, loving rather than hating.

Oh, for a moment, I forgot it was the UK in 2020.

Indulging in a bit of deconstructivism / Unconscious nurses and doctors.

There was a funny picture on Twitter the other day – it was a man posing the question, ‘I always find it difficult to tell if they are male or female …’

He was holding a chicken.

This, I guess you could call a clever joke, plays into the realm of psychology that considers conscious and unconscious biases – the expectation being the guy is a sexist and the reality being that our unconscious biases take us down a blind alley.

For several months I have been listening to the Adam Buxton Podcast (I spend a lot of time listening to podcasts) and something Adam has discussed previously is his interest in the word ‘actor.’

The other week he was interviewing British actress/comedian (comedienne?)  Ellie White and he asked whether she considered herself an actor (with the emphasis on the ‘or’) or an actress.

Adam has been talking about actors for a while.

That is what he calls actors, male and female.

I’d never really understood or considered what he was getting at until his most recent podcast when he interviewed the Irish musician/comedian/writer/artist Blindboy.

Prior to this interview I’d never heard of Blindboy (actual name, Blindboy Boatclub) – (Google reminds me he is also a podcaster, TV presenter and satirist.)

You can hear the whole discussion here.

It blew me away.

I haven’t heard such smooth, selfless candour and honesty in a long time; the conversation ranged from philosophy and comedy to psychoanalysis, the linguistics of class and gender identity.

It was here they mentioned the actor again.

And yes.

This time I got it.

You see;

When you say someone is an actor, the supposition is that they are a guy; as if, well, actors are men and women can act but they aren’t actors they are actresses.

Big deal you might say.

Let’s put it another way.

I was talking with my son recently; those of you who follow this blog, might recall this weekend’s discussion about the Romantics – well, a follow-on from that chat was my son’s reflections that he might not get into medical school.

I said to him, ‘You could be a male nurse.’

He replied, ‘You mean, a nurse.’

I’d fallen into the same trap as the actors and actresses.

Yes, most of the nurses I know are women, but nurse doesn’t mean woman just as bus driver, doctor or engineer doesn’t mean man.

This is all rooted in the concept of conscious and unconscious bias.

We, that is everyone tends to think of themselves as being unbiased.

If you ask Mr Trump, ‘Would you say you are biased against women/Mexicans/People of Colour/the poor/scientists’ he would almost certainly respond, ‘I AM THE MOST UNBIASED PERSON IN THE ROOM!’

Most of us think we are good.

Interestingly you can actually take a test to determine how good or bad you are at these things, particularly at an unconscious level, for that is where this all operates (I am currently listening to a Blindboy podcast from 29/11/17 in which he discusses the unconscious viewed through a chance encounter with an otter; see here.)

It is called the Harvard Implicit Association Test; I did it once and discovered I was a racist, misogynist, ageist, well, pig. It isn’t for the fainthearted.

It does however make me realise how incredibly my children are.

And although education seems to have fallen off a precipice of standardised tests and the planet is crumbling; young people today are liberated from so many of the dodgy biases that were central to my upbringing in the 1970’s.

You see, I might think I am enlightened; I read books by people from different backgrounds, I visit art galleries when they are open, I am really a product of the Badlands of my early years.

And how many readers are the same?

How many of you hear, ‘The doctor will see you now’ and assume you will find a man, even though most doctors are women?

It is so very easy because I have been around longer than my children to assume I know better; I don’t.

I know different.

I need to be deconstructed.

Little hands, absent feet and beautiful people

There are two topics I’d like to discuss this morning – one is a short narrative about mutant hands, the other The Romantics.

Good juxtaposition, no?

I’ll start with the poets.

Last night I watched the first episode of Simon Schama’s documentary on The Romantic Movement – The Romantics and Us.

Apart from the shame that I am watching too much TV, it was interesting as my son is studying this for his A-Level English and he has become fascinated by the movement and its ideals.

For those not in the know, as I wasn’t really, these are the poets and artists who started with William Blake and Théodore Géricault (I found out how to pronounce this for the first-time last night… it’s like Jericho with an ‘ee’ on the ‘i’ and a long, low ‘o’ on the ‘o’) and were followed by Mary Wollstonecraft, Shelley, Wordsworth and Byron.

The conversation started earlier in the day as we were driving to the lake at Rother Valley Country Park; ‘What an awful day,’ I said, ‘Not really, it’s winter, look at the trees, the falling leaves, the open sky,’ responded my son.

I’m not one to rain on my children’s parade so I let it lie; he then as we walked went on to talk about the Peterloo Massacre and Shelley running off with Mary after his first wife killed herself; typical dog-walking chat.

To be honest, I didn’t quite understand what he was talking about; it all came clear with the documentary which I urge readers to watch (available on iPlayer).

Perhaps the most poignant (there’s that word again… two days in a row) was the explanation for Géricault’s painting ‘The Raft of the Medusa’ which we used to have hanging in our spare room (not sure where it has gone) – Anne and the kids bought it the other year after a visit to The Louvre.

Anyway, the highlight of the painting for them was the fact that supposedly Géricault was not very good at painting feet and, well, on the raft there aren’t many feet.

Schama told the story in more detail which was filled with the topsy-turvy shenanigans of insider and privileged white upper-class prejudice which are central to how society is run nowadays; essentially a posh but ill equipped and inexperienced man was put in charge of ‘The Medusa’ on a trip to Senegal; the ship en-route sank; the wealthy passengers clambered on board the lifeboats and got away; the poor – the servants, slaves and general underclass were popped onto a raft which the lifeboats intended to tow.

In an act of unspeakable cruelty (which I am sure would never be replicated in 2020 Europe or America), because of the raft dragging the lifeboats and stopping their progress, the captain chopped the rope and left the raft to float.

Of the 147 initial survivors, by the time they were rescued 13 days later only 15 were still alive, the others had been murdered, cannibalised or thrown into the sea.

The documentary combines this with images of refugees struggling to cross the English Channel and the message is compounded.

I won’t describe more as you can watch the programme.

Now to ‘the hand’

Well, I don’t like to write about my dreams as in most instances there is little more tedious than listening to someone talk about their dreams; apologies; you can stop reading here if you like; I won’t be offended.

It’s nothing really; just dreamed last night that a small lump on my left wrist grew rapidly to become a warty tumour.

I asked Anne whether she would cut it off but looking at it she was concerned that it might be something nasty.

Only a couple of days passed before I realised that the warty blog on my wrist was actually a tiny hand, four fingers and a thumb, initially boneless and wobbly, but rapidly acquiring form and structure.

By this point we decided that I needed to see a doctor; for whatever reason we decided a dermatologist would be best – I guess, because initially it was all about the skin – there were no bones at that stage.

The doctors were impressed, not particularly shocked but interested; after all, is that not the height of clinical achievement – to have a condition that interests a doctor; if you are lucky, after the pandemic they might even write an article.

Anyway,

Within hours the hand was formed and although initially it appeared to be under control of my autonomic nervous system, rapidly, I worked-out how to move it myself; I could shake the doctor’s hand, twice, if not three times if you could left-handed handshakes as valid.

Eventually, an ulna started to grow from the wrist, little incremental accretions of bone, like the work of the 3D printers that were all the rage in the spring.

It rapidly became apparent that the hand then the arm were actually growing into a replica of me; that soon I would be copied, overtaken with the consequential decision as to who should be cut-off and put into formalin.

Such dreams are never much fun.

And where did all this come from?

Well, to step outside of the dream for a moment, and, on reflection by analysing what I had been up to yesterday, I had a profound experience reading the blog of a former colleague who has recently been diagnosed with MS.

You can find the link here.

Rebecca’s experiences that she describes so honestly and with such humour and compassion were powerful; it is bad enough to have a disease such as MS – for this to happen during Covid is another thing. Delay to diagnosis and treatment, the distance or inaccessibility of specialist care a recurrent theme.

During the pandemic I have spoken to more people than I remember, when you don’t meet relatives or carers face to face they become abstract. ‘I’m sorry, your mum is dying,’ or, ‘Your dad has Covid,’ words I never imagined saying, repeatedly down a disembodied phone connection.

The experience for me has been numbing; often painful and mostly sad.

In Rebecca’s blog, ‘You’re getting on my last nerve’ she tells how it is to be the person at the other end of the line.

Go read.

If I hadn’t met you in the library

I mean, what are the chances?

It was my birthday last month and my son bought me a copy of Matt Haig’s latest novel The Midnight Library.

The book deals with topics that Matt has covered in the past – mental health and different worlds being central themes.

I won’t attempt a book review as it would poor and, if you are interested you can find one on the Guardian website.

The book however examines the phenomenon of multiple universes.

Now, I don’t intend or aspire to explain at all what this it, suffice it to say, the theory relates to that area of, I think, astrophysics where wormholes and time-travel are a thing.

Thankfully the book doesn’t delve into the physics, more operating at the level of Back to the Future and flux capacitors.

Within the theory of multiple, if not infinite universes is the idea that at this very moment there are an infinite number of universes where Rod is sitting typing at a computer and, beyond this, there is a Rod who is slightly different, shorter, taller, with more or less hair on his head, that kind of thing – when you have infinities you don’t have to economise on options.

The novel is the story of Nora, a woman who is so fed-up with her life that she wants to end it all; the library is a portal into multiple different universes where her life might have gone differently; in one she is an Olympic swimmer, another a rock star and another a regular mum with husband and small child.

It’s great.

I loved it.

What is perhaps odder is that as I finished the book, I started watching a Catalan Mini-Series on Netflix called, ‘If I hadn’t met you’ – and, surprise that is also a multiple universe story, revolving around the main character Eduard and his attempts to not have his wife and children die.

This series I have found particularly poignant (?) given the combination of the universes with the romantic ideal.

When I was young and hanging out with my grandfather – Papa, he would spend much of his time when not watching Countdown or the horse racing reading large-print romantic novels.

I’m similar although the book print is regular size.

I know this is a silly happenstance coincidence, yet it is comforting.

Had my son not bought the book (this is the first birthday book he has ever bought me) and had I not selected that programme on Netflix (I have never watched anything in Catalan before) I wouldn’t be writing this now.

I know everyone’s life is full of these Roads Less Travelled, I guess some spend more time reflecting on ‘what if’ than others.

This is not to say, when I mull that I am unhappy with where I am. I am delighted at my current situation, yet, it does no harm to speculate, to dream.

In my alternative worlds I became an Israeli spy, in another a novelist; in another I am a beachcomber somewhere in the Pacific.

Candide, existing in the best of all possible worlds probably didn’t stop to reflect. It seems the long winter nights make this more real.

The joy of imagination and other worlds.

Would you want to risk missing God?

Back in the day, when I was a youthful doctor and working with those who were old and frail and approaching the end of their life I would support the patients with what we call palliative care – this is treatment or support that doesn’t aim to cure an individual’s disease or disorder but to provide as much pain or other symptom relief as possible.

With Covid this has become a very important aspect of how we support our patients; there is even an NHS report called One Chance To Get It Right. This focuses on the notion that a person’s last days or hours of life are moments in time that are irredeemable.

I don’t want to discuss the detail of this and for some this might be a very sensitive subject. With the pandemic the numbers of older people dying continue to increase.

Dying from Covid, often patients are alone.

The rules surrounding family visits are opaque – recent guidance suggests that relatives can visit those who are in hospital or care homes if they are at the end of life; the time-period is not defined. This does not touch on the situation of people dying from Covid and all the intricacies of relatives who themselves might be at risk of contracting and coming to harm from Covid visiting.

I won’t discuss this either.

I want to get back to God.

You see, when I was younger the cocktail of medicines we used to support the symptoms of people who were dying included a drug called Metoclopramide – this was often prescribed to address the side-effects (nausea) of Diamorphine, a very commonly prescribed medicine to address symptoms of pain at the end of life.

Sometime around the 2000’s this medicine was switched to Haloperidol which was in everyday use an antipsychotic agent (and one I have written about before, even including it on my list of ‘dodgy-drugs’) – it helps with hallucinations – it is also good to treat nausea; it is the main anti-emetic in use for people who are in the last days of life.

It used to be used to treat people with dementia – this was in the bad days before Professor Banerjee’s report and the realisation that this medicine was responsible for many deaths in people living with dementia, predominantly from some of its long-term complications such as falls, heart attacks and strokes.

Haloperidol has fallen out of fashion in the treatment of people with dementia (thankfully) and it is now mostly used in palliative care where longer-term complications aren’t really an issue;

Again, all of this is fine.

Now.

Back when I was at medical school; I wrote a dissertation on near-death experiences (Called NDE’s to those in the know) – these are the phenomena experienced by some people when they either come close to death or even die and come back, say, following a cardiac arrest or near-drowning.

I am sure most people are familiar – long tunnel, bright light, feeling of calm, out of body experience, panoramic life vision.

There is much to be said about all of this and some people even credit these experiences as being part of the early basis of religion (perhaps combined with early human experiences of psychotic illness).

Suffice it to say, I don’t go for the notion that people are actually seeing God at these times although there are many Americans who would disagree.

Now, and here is the thing; a near death experience is surely a visual, auditory and perceptual hallucination.

Just as if I were to take some magic mushrooms or LSD – the colours, shapes and sounds are generated by my brain chemistry interacting with sensory input from outside combined with fluctuations in levels of dopamine and other chemicals in my brain.

As some will know, you can have good or bad trips;

I can’t help thinking that you can have good and bad near-death experiences;

And here is my point.

Taking the starting thesis that you only get one chance to die, if the hallucinogenic phenomenon is a positive (or potentially positive) one, taking an antipsychotic (haloperidol) could possibly counteract this.

The haloperidol could equally cancel-out horrible nightmarish experiences which is surely a desirable outcome;

You can’t really discuss any of this with the person who is dying as by the time such symptoms happen, mostly the person will have lost the ability to communicate in a meaningful way.

Possibly, those who are dying and having a – I won’t say ‘good time’ – perhaps ‘positive experience’ might not require all the medicines available to the doctor or nurse. In addition to Diamorphine (which can itself induce hallucinations) we provide Midazolam an anti-anxiety drug similar to Diazepam or Lorazepam.

In most instances healthcare staff don’t rush-in with the medicines we prescribe but it is surely a delicate balance.

I guess this is unknowable.

If I was in my last hours of life and the tunnel and the bright light were there I don’t know if I would appreciate them being washed away by the antipsychotic, equally if the demons are descending I am sure I wouldn’t necessarily want to test my mettle especially when the end result is the same.

Food, or drugs for thought.

Which would you prefer?

Online persona

I have written a few blogs.

820 to be precise.

/

It makes me wonder,

How people who have never met me

See me.

/

I imagine there are two groups –

Those who have met me, friends and family, who from reading, have perhaps gained some insight into who I am beyond or separate to who they thought or think I am

and,

Those who have never met me and have an imagine;

A digital construct,

Streamed directly from the voices inside my head

Through the keyboard

To their cortices.

/

Voila

Cognitive transition

Electronic transference.

/

Does it matter?

Well, what people think of me does and does not matter;

/

There is the public me – the doctor, for example.

It would be bad if people saw me as a bullying, double-dealing cheat / scoundrel; that wouldn’t seem right – trust me I am a doctor, only, don’t kind of thing;

Then, there is me, the individual separated from that occupational persona.

Heck, I could or at least should be able to be what or who I want.

I’m not that adventurous and I suspect the lines between me as me and me as occupational me and blogger are so thin as to overlap almost entirely.

I don’t have a problem with this.

/

I remember the Steve Biko book – I think I have mentioned it before; I found it very influential back in the 80’s ‘I write what I like’ – he wasn’t taking any shit. Sure, it didn’t end well for Steve. He did have a legacy.

Do I write what I like?

No.

Mostly that remains inside.

It ping-pongs around my cranium; occasionally waking me at three in the morning.

/

And, does that matter?

Shouldn’t it be all about self-expression; catharsis?

Primal Scream I hear you shout (naked in the forest).

No.

/

We are living in times that are far too sober for such shenanigans.

Once upon a time I was wild, now I am tamed.

Broken.

And this, is who I am.

Steve Biko outside the King William’s Town Magistrate’s Court. 07/07/1977.

Lockdown Saturday

Half past six on Saturday night

Fireworks are popping,

Banging outside;

dark

and cold

with mist.

I liked this morning’s cobwebs; now they have moved-on.

The hum of TV downstairs threatens another dancing programme

I consider

Netflix

Or a book,

Not really interested.

The dog

In the corner house

Barks when I walk past;

He is a young Alsatian –

Upright ears and dead eyes.

A Mobius

Strip

No beginning

No end.

Round and round we go.

The American Election – Zazz & Razzamatazz

Every blog I have written for the past six months has I believe mentioned directly or not, aspects of Covid – either the state we are in or what is looming on the horizon.

I don’t know for sure whether I have lost readers because of my lack of variety – it doesn’t look that way; perhaps there is more traffic – greater numbers of people coming and going.

This week it has been ‘the election’ – I am sure I have not been alone in opening my iPhone app and tapping on news and looking to see if the numbers have changed.

The screenshot below represents what I have been looking-at for what feels like days.

Anyway;

That is not my point.

Well; it is, and it isn’t.

You see, I have been certainly focusing on Biden’s lead, allowing it to fill me with hope (when he wins this will be the first positive (from my narrow, biased view) political outcome in as long as I can remember); I have also looked at the numbers who voted for Trump.

It is this number that has entranced me.

70 million.

That is a lot of people.

It is so many people that I can’t imagine how many people it is.

I don’t intend to focus on the split; the dichotomy of left versus right – that is for another day, an examination of the neuropsychology of human beings;

Whenever we consider aspect of life to be patently right or wrong, most of us, imagine others see the world in a similar fashion.

I look at the kitten and believe that everyone else feels the same.

Some things are black and white.

Up is up and down is, well, down.

You can look at the science of beauty, it is based upon universal standards.

Yet, Trump to me is everything that is bad or ugly in humanity.

I can’t see one redeeming feature.

I look at him and think of Mussolini;