ME/CFS Chronic Fatigue, Fibromyalgia – experiences with GPs

A little over four years ago I had some thought-provoking comments on this blog from an ME/CFS sufferer. My post concerned speculation on ME/CFS from the perspective of the GP. The respondent who commented said: ‘If doctors would at least show some signs of empathy’. And I think that a very important message is contained in those few words. I am quite sure, too, that this plea would be one made by the majority, if not all, sufferers from the condition.

Since I wrote that piece (‘What do doctors think of ME/Chronic fatigue?’ 11^th March 2011) I have moved on. What I mean is, I have moved on four years into my retirement from general practice. And I have become a patient. I am not so unfortunate as to suffer from CFS, but I have experienced similar frustration to that complained of by those who are sufferers when they try in vain to get their GPs to take them seriously.

I am particularly concerned at the changes I have seen in family medicine – changes that were already creeping in during my final years as a GP. The sort of personal life-long care offered by perhaps the majority of GPs when I started in practice over 40 years ago is now a rarity, and actually looks set to die out completely. Doctors are under huge pressure and are highly regulated. I am sure that many who read this will be all too familiar with the consultation where the doctor barely looks at you, and instead taps data into her computer – data that she is obliged to gather for the purposes revealing prescribing patterns, the prevalence and incidence of this disease or that, and for her own appraisal and five yearly revalidation. Hardly a situation that favours the development of empathy as my correspondent so urgently wished for.

You may be of the opinion that GPs don’t know how lucky they are. Well, in that case, why is the NHS experiencing such a haemorrhage of GPS who have been trained at such expense? I am in regular communication with many of them, and a pretty miserable bunch they are, by and large.

I have been on medication for a chronic condition for a number of years now. It is monitored entirely by nurses at my GP practice. None of the doctors there has the faintest idea who I am. Were I to develop new symptoms that might indicate something seriously wrong I would expect to be put through a raft of tests initially, possibly without an in-depth medical history or clinical examination. On attending for follow-up I would probably see a different doctor entirely and perhaps yet another doctor on the next occasion. And were I to question such management I would be ‘reassured’ that this is now standard practice and all the doctors were equally competent. But where is the ‘empathy’?

I would have thought – and please correct me if you think I am wrong – that many of you who are sufferers from ME/CFS will be all too familiar with this. You attend with mystifying and frightening symptoms, and are you listened to? Is your fear and confusion acknowledged? Does the doctor turn away from the monitor and focus his entire attention upon you? Well, I would hope so. But I would bet my boots that this is not the common experience.

And what happens when the raft of blood and other tests all come back negative? What then? Are you dismissed? Or are you referred to a clinic with a two year wait? And if the tests do show something, how can you or how can your doctor know that the abnormality has any relevance at all to the symptoms you are experiencing? Disturbed kidney or thyroid function, or a degree of anaemia showing up does not necessarily have anything to do with the symptoms you initially took to your doctor. OK – so all the focus will go on the results of the tests and the diagnoses that transpire but it doesn’t mean that when these are attended to you will be all bright eyed and bushy tailed again. What it does mean is that the doctor is distracted from your original presentation (perhaps only too pleased to be) and it will be pushed aside.

When I was a GP trainer – supervising young doctors entering general practice – I required all my trainees to justify every test they ordered and to tell me what they were suspecting and what they expected each and every test to reveal. I daresay that if I, as a patient, asked my doctor why she was ordering this test or that I would be regarded as something of a nuisance at best.

No. Too many doctors do not have the time to listen. And I have every sympathy with them. Demand has rocketed, as have expectations. My own view is that this is largely the result of meddling by politicians and misinformation put about by the press.

There is a regrettable tendency, too, for doctors to say or at least to imply that the condition won’t kill you and there is no treatment they can offer for it, so there is no point in coming back. And if there was one, I would say to that ‘then God help you’.

On Faith, Prayer and Religious Belief

When I was a small child I said my prayers by the bedside at night because – well, because it was what the children of middle class English families did. My prayers were not answered, and I know now why this was. But not then, as God was a ‘given’. Expressing doubt in his existence was unwise in the extreme, particularly at the Anglican institutions where I was sent to school.

The experience of a boarding preparatory school in the 1950s at the age of seven – one year after the sudden death of my mother – was a sombre one to say the least. One lived constantly with a certain level of fear: of punishment, of bullying and something we did not then understand of the predilections of some of the masters. Prayer seemed the only option through which one might possibly obtain relief, and I prayed nightly and at length. Not that my mother might somehow be restored – I knew enough them to realise that that was never to be an option – but to be allowed simply to go home. Each morning I awaited the summons to be told that my father had telephoned to say that he had changed his mind and wanted me back to continue my education at a local day school. It never came. Hope faded, and the intense grief faded into a bearable numbness that became in the end, a part of life. Now it could be said that since even then, though I did not know it, since I was not possessed of any sincere religious belief then how could I expect an answer to a prayer? And this was the sort of neat non-answer one came to expect from the ‘genuine’ religious.

It is the same with suffering in general. Why does God allow such suffering in the world? is the perpetually repeated question. Because suffering is a necessary experience, we are told. It strengthens us, makes us holy. And we are privileged to suffer because in so doing we join Jesus in His suffering. And why are some people so wicked, so cruel to their fellow men and women? Because God gave us free will, we are told – some of us chose to live principled and ethical lives (those of faith, of course) while others – usually not believers – will become thieves and murderers. What a cheap cop out! What utter boloney!

Well, I am glad that I live in the real world now, because it is a beautiful and often joyous place, a place of limitless wonder. And when the realisation came that I had no religious faith and in fact never had any, the sense of release and relief was profound indeed. Pity I wasted all those hours on my knees when I could have been out running in the meadows.

The Case for Assisted Dying

The progress of the Assisted Dying Bill through parliament is a ponderous one. Lord Falconer’s bill intends that ‘competent adults who are terminally ill be provided at their request with specified assistance to end their own life; and for connected purposes’.

It passage seems unlikely to be easy or straightforward, and will be further hampered by the fact that in this country we have the somewhat arcane system whereby members of the established church (bishops) sit in the House of Lords. Hasten the day when that lot will be booted out. Yet it is hard to see how, in the end, some sort of facility for assisted dying will not be enshrined in law. Unfortunately it may be a very watered down one. Already sufferers from Alzheimer’s Disease and other progressive dementing processes are virtually excluded as a consequence of so many not being deemed to be competent to make such an informed request in their circumstances.

The medical profession has proved itself adept at prolonging life to an ever greater extent. I know, from having worked many years in the National Health Service, that quantity – length of life – has a far higher value set upon it than its ultimate quality among those who determine treatment regimes for patients. When it was suggested to me, in my late 60s, that taking a statin would reduce my risk of stroke or heart attack I asked the question ‘so, what would be my likely mode of dying in the end?’ The response, from a nurse who was acting upon the directive of a protocol on her desk, was a vague answer that was little more than a brush-off. No matter – from my experience of caring for people in extreme old age I had a pretty good idea of it in any event. Pneumonia if I was lucky, recurrent and chronic urinary infection from an indwelling catheter if I was not – indeed were I actually to be permitted to die of these illnesses rather than have yet another course of unpleasant antibiotics, quite probably administered intravenously.

But I want none of it. Not if I were afforded any choice in the matter, which seems unlikely.

The counter-arguments to assisted dying are several and include the wonderful quality of terminal and palliative care. Tosh. Or at least in far too many situations (not all, I grant you) - tosh. But this is what the public is fed in the press and the other media. So long as people are condemned to die ‘naturally’ there will always be suffering to one degree or another, and far too often appalling suffering in terms of pain and other symptoms, and loss of dignity. Worse – as we all know – deliberate and callous abuse by those charged with their ‘care’. People may try to tell you otherwise but they are either deluded or less than truthful.

Another powerful argument is the claimed potential for abuse of the law – as has happened with the Abortion Act which was never intended to create a facility for abortion on demand as has certainly happened in most parts of England. But that is a consequence of laxity, and collusion between health service workers and their patients. The demand for assisted dying is going to be far less than that for termination of pregnancy, and the decision could quite properly involve a judge as well as a medical expert, the family and – most importantly – the patient her/himself. So the fear that granny will be bumped off in order that her bungalow may be sold and the family go off round the world on a cruise ship on the proceeds should hardly be taken seriously.

When I was a GP I lost count of the number of times I was asked by people in extreme old age to be helped to die, or at least not to be treated in the event of serious illness. They had lost all their friends. Their families might be hundreds, if not thousands of miles away. And they lived constantly in the fear of ‘being sent to a home’. Of course I could not – and would not while the law does not exist – do anything that could be seen as acceding to their request, and I gently told them so. But they were very special patients to me and I gave them my best, which I know might have made their predicament a little more easy to bear. Yet still they longed for it all to be over. And almost always their parting took place in when they were alone, or – worse – in a busy hospital acute ward or on a trolley in A&E.

Does England Hate its Children?

I came across the question ‘Does England hate its Children?’ on a social media website in the aftermath of the Budget on the 8^th July 2015. It highlighted five concerns:

1. Debt to be educated.

2. Ending child poverty targets.

3. Exclusion from living wage.

4. Exclusion from many social benefits.

5. Expected to carry the burden of the increasing aged population.

These are points that should be of interest to all of us. But I am aware that they came from a contributor with an ‘agenda’. Poverty is pernicious and destructive, and whatever steps can be taken to diminish or eliminate it must be taken. And a wealthy society that has within it children suffering the consequences of poverty is one that has good reason to feel shame.

But our benefits system was flawed before this budget. It never ensured complete protection for the weak, vulnerable, aged or sick while at the same time enabled the growth of a benefits ‘culture’ wherein some people adopted a lifestyle of dependency upon handouts from the State as a matter of choice. Ask any teacher – he/she will tell you that they regularly meet children from families where education is not valued because ‘you can always go on the social’. But it is never difficult to find excuses for these people, saying in effect ‘it is not their fault’. But what else is this attitude if not patronising? For it suggests that they must be cared for since they know no better.

What children need most – and some may vehemently disagree with me here – is security and love within a family setting. My remit for the concept of family is a wide one: it may be single parent and one child, same sex couples with adopted or their own children and many variations on that. What matters is that the children feel safe and loved, and that they are encouraged in their learning and in their journeys towards independent existence. The cost in financial terms of ensuring these principles is probably not very great, but the value of them is beyond estimating.

The five concerns put by the questioner are relevant and important of course, but it would be wholly wrong to suggest that these exclusions are the sole cause of misery for children.

Children suffer far more, probably, as a consequence of the selfish and feckless behaviour of those charged with their upbringing and care. An unloved, frightened, abused child is far more likely to end up slipping into criminality or suffering from significant mental health issues. And anybody who thinks that throwing benefits and cash payments to them or their families is anything like the whole solution to their misery is naïve at best.

Uproar at the Opera

We go to the opera in London about once a year, which is just about as often as we are able to afford it. We certainly enjoy a good performance, and should it come as a surprise to know that the reason we go is that we enjoy good singing?

Like many, we are turned off by depictions of violence and by sexual violence in particular. And so we were among many who were shocked by the accounts of the gang-rape scene in the latest production of Guillaume Tell at the Royal Opera House.

Yet the producers seem to believe that it was fully justified. It is the fact that there were children in the audience that makes me conclude that any defence they put forward for the inclusion of the scene cannot be regarded as worthy of being taken seriously. Too much violence depicted on stage and screen is gratuitous, and designed to appeal to base tastes.

They draw parallels with the audience reaction to Stravinsky’s ‘Le Sacre du Printemps’ in Paris in 1913. But can there really be anything at all that these two productions have in common. My view that the audience at ‘Le Sacre’ were simply boorish. At the ROH this week I think that their indignation, while discourteous, was understandable and reasonable.

The Legacy of Glastonbury Rubbish

The photo on page 5 of the English 'Times' dated the 30th June 2015 hardly surprised me - it was one of acres of litter left behind by the fans who had attended the Glastonbury Festival. And I recall similar photos being published in the newspapers in previous years.

What's with these guys? Were they too stoned to know what they weren't doing? Or hadn't they been taught by their mummies that it's not nice to drop sweet wrappers on the floor? Or had they been taught but still did it anyway as a deliberate repudiation of what they might consider to be middle class values? Or are they just, well, dirty?

Or did nice Mrs Eavis simply not provide enough litter bins?

Look on my works, ye mighty, and despair ...

You may be surprised at what it was that has caused me to quote Shelley in the title of this thread:

On the first day of Wimbledon we were amused at the invasion of Centre Court by a small bird – a blue tit. It hopped and cavorted, not in the least perturbed by the furious activity of the two giants of the game. A picture on the front page of The Times on the 30^th June showed Djokovic – an Ozymandias ineed -  in a pose before the little creature that was almost an obeisance.

Well, I suppose in another year the little bird will be gone – a victim of winter or predator. And who cares? I never really took the Gospel of St Matthew 10:29-31 too seriously ...