The shame of Britain’s jewel.

The shame of Britain’s jewel.

The Learning Disability Mortality Review was published this week and it has largely gone unnoticed in the press and news. While we flaunt the successes of our health service, and describe it as the “the envy of the world“, we have ignored the fact that there is a serious problem with how the NHS treats one of the most vulnerable groups in our society. The report looked at those with learning Disability dying in NHS care and found that in about one in eight of those deaths neglect, abuse or incompetence had “adversely affected” the care that the individual had received.

The report makes harrowing and upsetting reading. It is clear that this group of people are being sold short by our health service, that they are often felt to have lives not worth saving. There are reports of staff failing to recognise the worth of the individual and thus they are discriminated against. This utilitarian view of life is very dangerous and particularly dangerous, in a system such as the NHS, where the client is not the patient but the state itself. The state will have the tendency to value some lives are more productive than others, more valuable than others, and thus worthy of more attention. This group of people find themselves at the bottom of the pile when priorities are being drawn up. When the calculus of how much someone is worth is reckoned their values – the pleasure they bring to their families, the love they express, the friendships they make – don’t weight well in the scales and they loose out.

Staff recognise this and start to behave accordingly; they care less for the patients and come to view them as obstacles in the path to giving better care to more deserving patients, and, in extreme cases, unworthy of using the resources which could be better used by someone more valuable. All of this has echoes of the film “Dasein Ohne Leben ” (“Existence without Life”), the 1942 Nazi propaganda film which was intended to soften the public’s opposition to the euthanasia, or murder, of the physically and mentally handicapped.

Although this group of people almost certainly suffer the most from this neglect they are unfortunately not alone. When I was working I was repeatedly shocked by the contempt that medical and nursing staff could express for patients with dementia seeing them as nothing more than “bed blockers” who were misusing scarce resources. Recent scandals about breast screening errors again show that ageism is still prevalent. Older women have higher risks of breast cancer but screening is avoided because it is “not worth it” in this group. Were the NHS an insurance system, as it was initially intended, then people who had been in the scheme longer, and contributed more, would expect better dividends not a scheme which rewards their involvement by reducing their entitlements.

But advanced age is not necessary to be a victim of this type of calculation. The high profile cases of severely disabled children being removed from their parent’s control causes further concern. In these awful cases, the parents asked for nothing extra from the NHS other than to get out of the way and to let them try what they could for their babies. Their hopes for their offspring were almost certainly futile but it may have helped the parents to know that they had done all that was humanly possible for their sons. But the system felt is was important, having assessed the importance of these infants lives, to stop the parents and other systems doing what the might lest they squandered resources.

When systems become too large they often become inhumane. When the patient and their family is not the focus then the system operates on economic principles of value for money. It stops being an insurance scheme to protect us form the high costs of health care, by aggregating risks, and becomes a system to ration care. In a rationing system the vulnerable groups of the disabled and elderly always loose out particularly in times of scarcity. As the NHS becomes increasingly unable to meet the demands put upon it it will start to ration ever more strictly. Then it matters not a fig, whether you paid your taxes diligently, or worked productively, or are a valued member of your family and community, if you are deemed too expensive and too unproductive then your services are going to be poor. You will get the minimum that can be offered if a callous system allow even that to happen.

Our sons and daughters, and brothers and sisters, with learning disabilities are not lesser people than us. They have every right to care and we should feel ashamed that a system what we hoped would provide universal healthcare  is failing to do so for the weakest and most vulnerable of our fellow citizens.

 

Getting out while I still could.

Getting out while I still could.

I recall that about half-way through my medical career I had a premonition of the problems with patient dissatisfaction  that we are now see. It was therefore with dismay, but no real surprise, that I read the results of the British Social Attitudes Survey on patient satisfaction with the NHS and social care. This has shown that growing dissatisfaction continues; now only 57% of people were satisfied with their healthcare while nearly a third (29%) were dissatisfied. These were significant changes, and deterioration, from previous reports and there was a particular drop in satisfaction with General Practice services. Primary Care had previously been the jewel in the crown of the NHS but now was viewed little better than other areas of the NHS. Some areas barely managed a majority of the population feeling satisfied (A&E for example at 52%) and these are generally worrisome figures.

These rates of satisfaction should alarm us. We often hold up the NHS as the “envy of the world” despite its relatively lacklustre outcome measures. We are now watching it slip to the bottom of league tables, of developed European countries, in public satisfaction as well as in performance. Why is this ? It does not seem that it is due to sudden increases in public satisfaction with other European services (though they have generally modestly improved their scores on this matter). It is because of an increase in dissatisfaction with the NHS’s provision and people cite unhappiness with inadequate staffing, delays in being seen, and poor quality of care. They tend to view this as a consequence of inadequate funding and government interference.

These two factors will, without any doubt, foster and magnify dissatisfaction but I am unsure that these factors are as important as they might initially seem. European healthcare funding has been squeezed in all countries but other countries have not witnessed the deteriorations in satisfaction we have observed, indeed, some have even seen slight ongoing increases. It is difficult to quantify government interference but it is a safe bet that this has not been absent in any of our comparator countries. But could there be another factor underpinning this dissatisfaction ? I thought I felt the start of this change many years ago, and this premonition, lead me to leave the practice of medicine earlier than I might otherwise have done.

When I finished University and started working as a practicing doctor I was full of enthusiasm and keen to learn and use new skills. I saw myself as a medical technician; the better I could be at various techniques then the better my patients would fare and the more satisfied I would feel. This was a useful approach, it spurred my education and learning. When a young doctor I had little time for the “professional” hokum that my seniors espoused. It seemed to me to be a way of holding onto power in the face of technological change and advancement they seemed to be using calls to “professional standards” as ways to obstruct needed change. I was certain that I would never become an old reactionary like them.

But time progressed and I learnt my craft and I started to realise that technological skill was only one aspect of healthcare. There was also a large number of other skills that were necessary, political ability for example, to effect change. I also learnt through my successes and, more importantly, failures that there was an art to the practice of medicine which was as important as my knowledge or technical ability. I know that the times that I failed patients it was rarely through ignorance or ineptitude but rather because of a failure to relate to the patient equally and fairly. I recognised that when I failed; it was the times I rushed, did the job but little extra, and paid inadequate heed to the opinions of the patient or their wishes. I started to recognise that I needed more in order to be a decent doctor and began to discover the importance of professionalism.

I grew to learn that professionalism was an asset for both me and the patients I worked with. The NHS was changing around me, a culture of target setting and central planning was reducing the autonomy of clinicians and reducing the choice for patients. It is often said that patients have difficulty in making healthcare decisions due to the knowledge deficit and that they are almost wholly reliant on their medical attendants in order to make these decisions. This is not the case. I grew to be very aware that one skill that patients have is the ability to distinguish between good and bad doctors. They are much better at it than fellow professionals, they know who is good at the job and who is not. But unfortunately they do not get to make that most basic choice – the choice of whom to see, whose advice to seek and with whom they will work to improve their health. In the NHS these decisions are removed; you see the GP that covers your area and the specialist contracted for your area, the patient has little or no say in the matter. If they are lucky they will be paired with the best, on average they will receive average care, and if they are unlucky they may be stuck with the underperforming. You could be referred to the best doctor for people with Parkinsons  disease but if your problem is diabetes then this might be less than wonderful. Patients would rarely make this kind of mistake, systems often do.

This lack of patient choice was worsened by another aspect. The patient didn’t chose the doctor and the doctor increasingly didn’t feel that they worked for them as an individual. The central planning and target setting meant clinicians felt that their employer was the NHS, in its various bodies, not the patient per se. Targets were set at Health Board meetings not by patient-doctor discussion. Many times targets could be thought of as useful but a target which pays doctors to increase the number of people on statins might mean that the elderly man who went to see his GP because of loneliness and poor mobility might find himself on the bus back home with a prescription for a statin he had never thought he wanted. It may be beneficial for him, and it might reduce the cardiovascular morbidity of the group, but that had not been his issue and it is possible that the time taken to discuss the statin left less time to talk about the poor mobility and their fears about this. Taking a professional approach meant that, while we would try and meet the targets put forward by my employer, my first loyalty was to my patient and we had to address their concerns first, agree a plan of action with them, and only secondly try and mesh this with the central dictats which were aimed at improving the group.

Without this professional approach there was a great danger of starting to practice a little like a veterinarian. When you take your hamster to the vet, the vet assesses the hamster and discusses with you how you would like to proceed. If the vet informs you that you will have to sell your car to pay for the hamster’s surgery, or forgo a holiday, it is quite likely that the hamster’s days are numbered. We will all grieve for the hamster and agree that it was for the best. Increasingly I found that patients came to me for advice, for example with Alzheimer’s Disease, and I would consider whether we should start a cognitive enhancer. But I would not discuss this with the patient, who is now in the role of the hamster, but with the NHS prescribing group who was in the role of the hamster’s owner. They (Hamster owner/ Prescribing Group) often decided that economically it was for the best that we didn’t prescribe and while this was true at a group level (in health economic terms) it may not have been at the individual level.

These are always difficult decisions but they are difficult decisions that should be taken openly, after discussion, with the patient. The patient should be able to trust that the advice they are being given is the best advice for them as an individual not simply the best decision for the community. When patients choose their doctors they are seeking the best source of advice, advice they can trust because it is not skewed to meet a third parties interest.

In the NHS patients lack the ability to choose who they see. Doctors and nurses are  becoming increasingly micromanaged and their professionalism, and thus their independence, undermined. Together this leads to patients unable to work well with their medical attendants and unable to be certain that the advice given is the best available. It sets up distrust and discontent, they see that other European countries, with similar healthcare budgets to ours, do better by patients with common serious medical conditions. Patients read that survival rates for breast cancer in Britain are poorer than elsewhere and that we have more infant deaths than the European average. No matter how many politicians tell them that there are more doctors or nurses, or the NHS is doing more than ever before (which is quite possibly true), will counteract their experience of impersonal healthcare and poor quality outcomes. They will become dissatisfied and this dissatisfaction will continue to grow until the primary problems are addressed.

Until individual patients are again at the centre of how healthcare is delivered it is likely that even if we throw much more money at the system (which will probably be the electoral strategy) this discontent will grow. When we look back, we see the Tredegar Workmen’s Medical Aid Society made a great influence on Aneurin Bevan and influenced the development of the NHS. Unfortunately we seem to forget that the workmen in the Medical Aid Society chose and employed their doctors – they voted on who would be employed and sacked those that were felt inadequate to the job. I am sure this choice greatly enhanced the likelihood of patient satisfaction and is something that we need to rediscover.

Before my career had arrived at its natural end, I had premonitions that dissatisfaction by patients would be inescapable and lead to dissatisfaction in  clinical staff also. I could see the first changes in morale and attitude and felt I had to leave. I hope that I will be proved to be wrong in this prediction, as I have been on many others, but recent news has not given me cause for optimism.

 

 

It’s a big fat lie.

It’s a big fat lie.

I read today [OECD] that Britain has the highest rates of obesity, and fatness, in Europe and is the 6th most obese country in the world. There is also  the terrifying statistic that the rate of obesity has doubled since the 1990’s and we face the serious prospect of this bankrupting the NHS. Obesity is a major risk factor, as we all know, for diabetes, cancer, hypertension, heart disease, stroke and dementia – this rate of change should alarm us – but it won’t.

For many years, most of my working life, I ignored a growing problem. This problem was the growing size of my belly and my increasing size. By the time I changed my lifestyle 6 years ago I had managed to create quite a respectable problem for myself. My waist was 35 inches, my weight was 14 stones and unfortunately not being a tall man my BMI was 31.6. I was quite clearly obese. This had crept up on me, I knew as I aged I was becoming less fit but I didn’t look that different to many other middle-aged men and nobody passed any adverse comments. As a doctor, I knew I was building up risks for myself but I was able to  minimise these in my head. Nothing bad had happened, I don’t look that unusual, my blood pressure is OK, I still stay active – it really was easy to convince myself that this was no great deal.

Then came the rude awakening. Five years ago I was diagnosed with Type II diabetes mellitus with blood sugars so high I had the full range of symptoms and was started on metformin instantly, at a pretty high dose. I then went through the NHS’s education package. This told me to take my medicines, eat regularly and sensibly, and take a bit of exercise. With this, I was assured, the thing was manageable and I’d be fine. No-one took a blind bit of notice of the large, and obvious, wobbly bundle of fat I had around my middle even though this was the most conspicuous thing of my appearance. (If you want to imagine me then – not recommended – then imagine a potato with four cocktail sticks as limbs, that was me to a “T”). I sat on classes with other similarly shaped people and we all pretended that there was nothing amiss, nothing that eating a stick of celery couldn’t sort out. I went to the gym, where the rhythmical bouncing of my and my new friends’ bellies, while we tried to jog on the treadmills, was almost hypnotic to watch. Through it all no doctor, no nurse, no dietician, no-one said – for goodness sake get rid of that belly ! They were all too polite to mention it.

When I received the diagnosis a cold shiver went down my spine. I’d worked in an area where I’d seen the consequences of diabetes. I’d spoken to men about to have their feet amputated, I’d given rehab advise to folk after their stroke, I’d completed forms confirming that a diabetic man was now blind, and I’d consoled widows after their spouse’s fatal heart attack. I knew my mortality risk was now considerably increased and I knew some of the problems I might face. I also knew, from very cursory information gathering, that my poor diet and obesity were the main factor in this.

I decided to change, I was so scared and shocked, I knew I had to change. I went on a low carb diet and lost 3 stones, I kept on the diet and took regular exercise. I saw my waistline shrink, my belly disappear and my blood return to near normal. After a few months I came off medication and have remained medication free, and with relatively normal bloods, for the past years. A couple of my diabetic pals, who were equally shocked, did the same thing with similarly good results.  But I meet my other pals, who were never troubled by the thought of their weight; still obese, still taking medication and now starting to experience the adverse consequences of this illness.

So I have a personal interest in this report of growing obesity in the UK even though I am a relative neophyte to the world of diets and healthy eating. What are we to do to try and stop this growing trend. It is clear that there are some things we can’t do.

We can’t reduce the availability of food. This is a non-starter, there is no way we can limit what people eat – they must do this themselves. If you don’t sell the double pack of Mars bars I’m smart enough to get around this by buying two packs as is everybody else. Attempt to limit things by smaller packaging could only work if we were happy to accept central rationing of our food, otherwise we just buy more of the smaller packets.

I don’t think that we will get around this by education. I don’t think that there is anyone left that thinks a Big Mac and fries becomes a healthy option because it has a gherkin in it. We all know that a salad is healthier than a bar of chocolate – education is the answer when ignorance is the problem. That is not the issue here.

I doubt we will have much success tackling our increasingly sedentary lifestyles. Anyone suggesting we get rid of the automobile, or suggesting we dig roads by hand or get rid of any other  labour saving machinery, is unlikely to have a successful career in politics. We can suggest that people exercise and find ways to make it easier but, unless we are going to have forced marches then we need to find ways to make people want to do this.

The key in the affluent west is that we need people to want to be normal sized, to fear being obese. This is what we have lost. As I walked around I saw other people the same shape as me, it normalised my obesity. Chairs, cars, everything has been slightly adapted to suit the larger body, each step making it easier to be obese and, more importantly, making it easier to ignore your own obesity. I needed somebody to tell me – “Whoa ! You’ve got far too big there. That doesn’t look right” but even when I had fallen ill people were too afraid to mention it. They were happier to let me die earlier or loose my sight, or foot,  than to be accused of “fat shaming”

We would prefer people to be comfortable in their obesity, than in any way upset – but this is precisely what we do not need.  Discomfort might prompt thought and redirection and improvement to their health and life. I wish someone had spoken honestly to me, when I asked “How do I look ?” I wish they had said “you are getting fat” rather than lied with “Fine”. There is no need to be unpleasant about this we just need to be honest. We also need to be careful about attempts to actively normalise obesity. I noted, when in the supermarket today, this is not as strange and impossible idea as I had thought –  three of the covers of magazines (directed to young women) were using obese models. It may be dangerous to promote anorexic stick insect ideals of beauty but it is equally dangerous to promote obesity as a good choice.

The problem of obesity  has unfortunately got bound up in the gender issues of objectification of womenWe  but obesity doesn’t affect only one gender. All of us are at risk when we treat our health and future in a cavalier way like this. There are many vested interests who would prefer us not to think about it; the food and pharmaceutical industries would be much happier we consumed more of their products and dealt with the consequences. The media and beauty industry can sell us their products either way, fat or thin models, it is of no concern to them simply which model sells more copy.

People are free to live as they wish, they are free to be fat or thin as they choose, but they must choose with adequate knowledge. We should not influence these decisions because of our political biases and we should net let people die early because we were too afraid to tell the truth.

 

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Cosmopolitan – This photo series shows that “fat” can be as beautiful as any other body type

 

In Loco Parentis – the terrifying tale of Charlie Gard

In Loco Parentis – the terrifying tale of Charlie Gard

As a doctor I have found the unfolding tragedy befalling Charlie Gard and his family extremely upsetting to follow.  This poor boy and his family are butterflies being crushed on a wheel to press home a legal point, they are unfortunates being punished having committed no crime.

Let us firstly be clear what this case is not about. Despite protestations to the contrary this case is not about the best interests of Charlie Gard. The best interests of the child (1)  are clearly important and made paramount both in the UN Convention of the Rights of the Child (2) and in British Law with the Children Act of 1989 (3) . It is clear that all the parties involved in this debate are acting because they have the best interests of Charlie at heart. The doctors and hospital feel that they, by virtue of their knowledge, know what is best to do. His parents, through love and affection, also believe that they can see the best plan and hope for their son. Both are acting in the best interests of Charlie, this is not the problem. The problem is who decides what exactly are Charlie’s  best interests.

It has always been the case that the parents of the child decide what is in the best interest of the child. This is as it should be as it reflects the natural law and ensures that the people most attached to the child’s interest are those who act as the child’s guardian. There are very few circumstances when this can be changed and they depend upon proving that the parent is being either negligent or malevolent. Neither of these factors are in play here and, if anything, the parents have taken extraordinary steps to secure chances for their child, well over and above what many parents would have been able to do.

It is interesting that, at the 24th hour, Great Ormond Street Hospital has made an application to court to revise its plans (4) possibly starting to realise that the parents’ opinion may have been closer to Charlie’s best interests, than had their own opinion been. So in this difficult calculus of what is the best plan of action it appears that Charlie’s parents may have been the better judge all along.

While these arguments over the ‘best interests’ may mean that the parent disagrees with the medical team it does not mean that the parent can compel a doctor to do something they feel is inappropriate or wrong. But again this is not the case in this situation. Charlie’s parents have never asked GOSH or the NHS to undertake treatments they do no agree with. They have gathered together sufficient resources to enable Charlie to receive this treatment by doctors who believe it is, worth a trial, in the child’s interests. This should have been the end of the dispute. Charlie and his parents should have used their money to go and try this last ditch attempt, to catch this glimmer of hope.

GOSH and its staff, however, stopped this. Their court battle stopped the treatment and refused the parents the ability to move their child. In their paternalism they not only refused to help but also stopped anyone else helping. The thousands of people who collected money to help Charlie were thwarted by this as well as Charlie’s parents and the other hospitals and doctors who wanted to help.

I am a very old-fashioned doctor and I don’t fear paternalism per se. A desire to act like a father, is a a desire to be benevolent, guiding, helpful and wise. In itself not a bad thing. It becomes bad when it belittles another party and reduces their agency. When doctors worked in a professional relationship with their patients, the doctor’s paternalism would drive them to seek the best for their patient and was usually leavened by respect for the patient’s autonomy. This combination could be valuable when there were difficult scenarios – when the future was unpredictable and  the efficacy of plans of action difficult to assess. Much of the placebo effect of medical intervention depends on this aspect of the relationship and large parts of the benefit of of healthcare comes from this caring, guiding, advisory aspect of medical care.

There was always one very good safeguard against this paternalism becoming intrusive or  belittling, when the relationship was between doctor and patient, the patient could always terminate the relationship. If they felt that the doctor’s approach was wrong they had no need to continue to use them. This was a way to safeguard the patient and also a way in which the doctor would know that they had overstepped the boundaries and they could learn where paternalism started to erode patient autonomy. But in the NHS this is difficult. The patient can’t change their doctor without a great deal of difficulty. If they change they will probably be labelled a “difficult patient” which might mar relations with their next medical practitioner.

In addition, under the NHS the patient is no longer the employer of the doctor in the UK. The most important relationship for the doctor is the one with his employer – the state, the NHS – not the the patient directly. It is the state who pays his wages, sets his targets and assesses his performance and we know “he who pays the piper calls the tune“. In this scenario paternalism is largely unchecked and can be very dangerous. Paternalism, appearing kindly and wise, can mask actions that are not in an individual patient’s best interest. Rationing and refusal of therapy is hidden as medical advice and choices are withdrawn from the patient. Doctors often find, when working in the NHS, that their attempts to maintain professional standards and a focus on their relationship with the patient can cause them difficulties. They are made to feel as if they are being disruptive when they call for what is appropriate for the patient. They can be told they are jeopardising the budgets, failing to be a team player by not following the organisation’s line, and generally made to feel awkward if they behave in a manner that was formed by their vocation and training.

In this case paternalism seems to be being employed to sweeten a bitter pill. The state wants to end Charlie Gard’s life before all options that are available have been tried. Despite having seen parents act heroically and selflessly for their child, without an ounce of malice, they would prefer Charlie died rather than allowing the parents to try all they can do. But rather than admit this we are told that they are the wise and kindly people who know what they are doing, we are awkward and unruly children causing a fuss.

Well thank God for the fuss that Charlie’s parents have made;  it may not save Charlie but they will have opened the eyes of many people and might save future families from the horror that they have had to endure. They truly are a heroic family who deserve our support (5)

 

 

 

 


[1] https://en.wikipedia.org/wiki/Best_interests

[2] https://en.wikipedia.org/wiki/Convention_on_the_Rights_of_the_Child

[3] https://www.publications.parliament.uk/pa/cm201012/cmselect/cmjust/518/51807.htm

[4] http://www.telegraph.co.uk/news/2017/07/07/hope-charlie-gard-great-ormond-street-seeks-explore-new-evidence/

[5] http://www.charliesfight.org/

The NHS Choir Christmas Single

The  NHS Choir Christmas Single

Feeling rather low on Christmas cheer I was glad to come across the blogpost below. In this excellent piece the author managed to express, much better than I would have been able, what is wrong with this Christmas record.

The NHS Choir’s Christmas Single Is Propaganda Worthy Of North Korea

 

I spent most of my working life in the service of the NHS trying to help the elderly and the mentally ill. In the latter half of my time, I realised that the NHS was no longer delivering healthcare well and outcomes were falling below that of of other comparable European countries. In particular it seemed to be failing the elderly and those with chronic conditions.

Unfortunately attempts to look at alternative ways of working and organizing were rarely pursued as any discussion was held to be breaking a taboo – the taboo that the NHS is wonderful, and provides excellent and comprehensive care. When this was questioned, even gently, we were warned that any attempt to change matters would result in patients dying in the gutters destitute after paying for healthcare and the elderly and infirm kicked out of their homes, as we presume happens elsewhere.

As I travelled widely and saw other healthcare systems in Europe I realised that we could learn from our colleagues there. But a closed mind is a barrier to education. We cover our eyes to the failings of the NHS and lay the blame on inadequate funding when alternative systems spend similar amounts and produce better outcomes. Now it seems we can also close our ears to any doubts and sing along to the company tune – The NHS is great, our saviour in times of need, pure in word and deed, only those with black hearts fail to see the Glory.