On paying doctors to diagnose dementia

Being paid by outcomes is no new thing in the NHS. In physical health, good outcomes are relatively easy to distinguish. In mental health, it’s more complex. Often, outcomes look at symptoms or daily functioning (often defined as ability to work, travel alone, etc), but these are blunt instruments for complex and often nuanced problems. It’s a fundamental truth that not all health is quantifiable and that not al treatment is quantifiable. It is perhaps as great a truth that the people who decide how health services should be commissioned and run don’t really get that.

Thus it was that I read with horror that GPs are to be paid up to £200 to diagnose dementia. There will be no ‘second opinion’ in this case – no one will verify the diagnosis, but there it will sit, on your medical records, colouring the way you are treated and interacted with for the rest of your life. The government says that this will increase the number of diagnoses of dementia made, which it doubtless will, if it will earn the diagnosers a small fortune. But a diagnosis which is incorrect is worse than useless; it is actively harmful.

Not that I am accusing all GPs of being mercenary. Far from it. Most GPs are dedicated to their patients and, I am pretty sure, have an ethical code which would stop them diagnosing for the sake of it. But some are less scrupulous. I am currently working in learning disabilities. People with learning disabilities tend to have poorer health than the rest of us and, when they become ill, they are more likely to die. Partly, this is because people with an LD often lack the knowledge most people have about the ways their bodies should look or feel and partly it is because they may have trouble communicating it. As such, tumours, abscesses and ulcers can grow and grow without anyone knowing until they become fatal. GPs are paid £100 to do an annual health check for someone with a learning disability – diabetes, breast, prostate and thyroid checks are all par for the course. Yesterday I was told that there are some GPs who have been found to pocket the £100 whilst palming off the health checks to unqualified care home staff. The parallels are clear. The acquisition of money can do terrible things to our sense of professionalism and it takes quite something to resist the lure of it..

But there’s a more fundamental point here. GPs have a breadth of skills and knowledge, but the clue is in the title, they are ‘general’ practitioners. They tend not to diagnose severe and enduring conditions; they, rightly, send you to a specialist. During training, I have spent six months working with older people, diagnosing dementia. I spent six months working in a specialist neuropsychology placement assessing people with stroke, multiple sclerosis, Huntingdon’s chorea, epilepsy, Parkinson’s and so on. Typically, an assessment, a thorough, robust, clinically-defensible assessment would take some four or five hours. With older people, it often takes longer because they fatigue more easily. Writing a report, up to nine pages long, takes hours if it is done well. To be sure, with practice, you can do it more quickly, but there is no substitute for a detailed clinical interview and a well-selected test battery. Neuropsychological assessments show what brain scans can miss and virtually always add real clinical value. That value is then translated into help for the person. I have written reports detailing a dozen recommendations to help the person manage better. It’s time-consuming, but it’s my job and it’s the right way to do it. The wrong way is to have a ten-minute appointment with your GP, be asked some crude questions to estimate your cognitive functioning and receive a diagnosis on the spot.

But, you might say, if the person gets a diagnosis, they will get treatment. Well, perhaps. But if the diagnosis is incorrect I question the point of treatment. And, unfortunately, they blunt truth is that we can’t do a lot for many dementias. There are tablets that work for some people, but they are only prescribed for very specific types of dementia, of which there are many. Thousands of people have dementias which cannot be treated by medication. There are ways to support such people, but a diagnosis is not always helpful and not everyone who has an assessment wants to know the outcome of it. Knowing can affect your ability to drive, your perceived ability to work and retain control of your legal and financial matters. It can make you pitied by your family and friends. It can make you terrified of the future. It cannot be easily undone and the effects cannot be avoided. There is no magic cure and, truth be told, having an assessment, even a good one, is something that people often think about very carefully. Now imagine all those consequences based on a poor assessment and a diagnosis of dubious nature, made in the context of £200 in someone’s back pocket, and think whether you would want your parent to be in that position.

On being ‘almost anorexic’

Courtesy of the folks at Vagenda, I came across this yesterday:

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One of the Vagendans asked what people thought about I and I was more than happy to offer my opinion. In short, it made me deeply uncomfortable.

Anorexia is a serous condition characterised by an individual being severely underweight as the result of either restricting calorific intake or purging (by vomiting, excessive exercise or, sometimes, laxative use). Although purging is often associated with bulimia, the key difference between the two is that anorexia relates to an individual being extremely underweight whereas bulimia is associated with being within the expected weight range.

This picture refers to ‘almost anorexia’, which I had never heard of until I saw it. I’m not sure where they got the stat of 1 in 20, since, essentially, ‘almost anorexia’ is a made-up term (although a Goggle search turned this up). Anorexia is a condition which can be treated, although it’s important to note that people still die as a result of it. Equally, body image issues are a significant and growing problem amongst both males and females. We are, unfortunately, socialised in a culture which teaches us that there is only one way to look if you want to be attractive and that anything which doesn’t sit within these narrowly-defined limits is sub-standard. The evidence is there: eating disorders are becoming more common and they are becoming prevalent amongst ever-younger people. We are bombarded with images of the ‘ideal’ body and, whilst it would be crass to say that there are no other factors which can contribute to the development of eating problems, it would take a remarkable person to convincingly argue that this bombardment makes no contribution.

So, given all that, why does the notion of ‘almost anorexic’ make me uncomfortable? Partly, as I said, because it doesn’t exist in the research or clinical literature. There are criteria which have to be met for a diagnosis of anorexia. Technically it’s a mental health problem. The one thing that characterises all MH problems is that they must have a significant impact on functioning. Does ‘almost anorexia’ meet that criterion? I don’t know. Does skipping lunch regularly mean your functioning is impaired? ‘Frequent’ restriction is not the same as ‘severe’ restriction. Lots of people don’t have breakfast. Does that count? I suspect not. I try not to eat too many puddings and biscuits, but it’s not the kind of restricting I that I imagine the label is referring to.

My problem with ‘almost anorexic’ is that it runs the risk of pathologising people unnecessarily. I don’t think body issues are a good thing, but there is a line between body image issues and being anorexic. That line is not set in stone; it is drawn in the sand. Such is the nature of mental health. We work in the grey areas; we don’t have the luxury of monochrome. Equally, getting help early is important, but do we really need to use a term like ‘almost anorexic’? Anorexia is a powerful word and I suspect that being told you’re on the path towards it would be frightening for many folk. Could it convince people to get help? Maybe. But we also know that diagnostic labels can be unhelpful and make people feel ‘ill’. Having body issues doesn’t make you necessarily ‘ill’. Labels have to be used with great care and I don’t think this takes enough care. I have no doubt that the intention is good, but methods are also important. So yes, let’s talk about eating disorders and let’s talk about eating issues. Let’s address those issues before they become something more serious; before the effects on self-esteem become life-long. Let’s stop telling people that there’s only one way to be beautiful or worthy or loved. But let’s not tell people they’re on the way to a psychiatric diagnosis if they’re not. It’s not ethical and, more fundamentally, it could do more harm than good.

The language of psychiatric disorder: How useful is it?

The field of mental health is often presented as dichotomous in its thinking. There is a common presumptions that we focus on symptoms and declare you ‘ill’ if you meet a certain (usually arbitrary) number of criteria. Like many presumptions, it’s not strictly true.

I came across this recently, in which an America soldier declares that PTSD is ‘not a disorder’. For the uninitiated, PTSD is post-traumatic stress disorder, characterised by exposure to some kind of significant trauma during which the person was (perceived risk of death, injury or sexual violence. It needs to cause some kind of uncontrollable response – nightmares, perhaps, or flashbacks. It must manifest itself in heightened awareness to perceived threat and there must be a marked effect on mood or thinking style, such as blaming yourself for the event. It is, unsurprisingly, common in those who engage in military combat and there is much research into the (often profoundly negative) effect of combat on veterans’ mental health and their level of substance misuse. So for a soldier to say that PTSD is not a disorder is unusual, but his reasoning is perfectly sensible: if you have seen active combat and witnessed death and destruction, if you have been involved in scenarios in which you thought you might die, why wouldn’t you expect to experience some adverse consequences?

It doesn’t just apply to PTSD. If you’ve lost your job, you’re about to evicted from your home and your relationship is breaking down from the stress of it all, why wouldn’t you experience a dip in mood? If you were mugged and seriously assaulted to the extent that you avoided going out I wouldn’t think it bizarre if you developed agoraphobia. If you’ve had a bout of terrible physical health and the doctors couldn’t work out what was wrong it might be entirely expected that you would become anxious about your health. For most people, psychological difficulties arise in a context which means that the person is finding it difficult to cope, in some way. It doesn’t make them weak, it makes the human. If you push your body too much it will start to break down and the mind is not so different. But there is real debate about the language of disorder.

It’s a difficult one. It is generally accepted that well-being and distress exist on a continuum and to some extent, our diagnoses are arbitrary. We might have six criteria and say to have to meet three. We might say you have to experiences the symptoms for at least three months or two weeks. Why do we say this? Because we feel the symptoms need to be problematic for a certain length of time and that we should be past the point at which they resolve themselves. So there is a logic to it all, but it is fundamentally arbitrary. And because of the history of psychology, the language is one of ‘disorder’, of ‘illness’, of ‘deficit’.  That’s really difficult to reconcile with a belief that sometimes we all find life tough and that that is human. Physical health is not usually defined as ‘disorder’ or ‘deficit’, and if it is it is generally localised (‘your pancreas is not producing insulin and this means that you are diabetic and we need to give you injections’). We can;t say for sure that psychological problems ‘exist’ in any particular part of the brain – we know that the frontal lobe is responsible for empathy, but we don’t know that ‘depression’ lives in any part of the brain. And when we suggest that poor emotional well-being is ‘mental illness’ we are pathologising you and your sense of self and that means a lot more than pathologising your thyroid.

Personally, I don’t find diagnostic labels all that useful because they’re no more than a label. What matters to the person is not what a group of psychiatrists think they have, what matters to them is why they are feeling the way they are feeling and how to stop feeling that way. We refer to it as ‘formulation’, which is simply a personalised explanation, put together with the person who is accessing mental health services and built up over time, of what is causing the problem, what keeps it going and how we might be able to do something about it. But we exist in a system which does apply diagnostic labels and which does treat you as ‘ill’ if you meet our criteria (and they are ‘our’ criteria; they’re not fail-safe, like the criteria for coronary heart disease, for example). It’s a real struggle – how do we make people feel that they are not the only ones who feel the way they fail whilst also helping them understand that the fact they are seeing mental health professionals does not make them deficient? There are strong voices on both sides of the debate (strong enough to warrant a blog post of their own), but for most us , who spend our time trying to reduce people’s distress, it’s less about the ethics of diagnosis and labelling and more about the meaning these concepts have to the people we see. I don’t talk to the people who are referred to me about diagnostic criteria. I talk to them about what isn’t going as well as they would like to and how I might be able to help. I worry about the language we use and I try to adapt mine accordingly. I wonder, though, if I worry about it more than the person I see, who often, simply wants life to be good again.