Packing punches with poetry
My social science research training was great in terms of giving me the tools to understand more about how we get to know what there is to know. Philosophy of science can be tricky to get your head round at first, but once you get practical examples to illustrate principles, it’s pretty much logical and consistent.
My first degree, which was in English, was much harder, in that, to do well, one had to learn how to get a ‘feel’ for what writers were trying to express, as well as understanding the mechanics of it all. I had excellent tuition, and was both pushed and supported in learning how to get the most valuable all-round education from critical reading of literature.
Unthinking politicians might easily cast aside the close reading of poetry, regarding it as an unvocational and unnecessary discipline. In fact, such practices can bring far greater appreciation to the details of important aspects of life that the language of policy makes impenetrable.
Photo by Joseph Lindley
Here’s a little example. The Social Brain team has been involved in the development of a proposal about ‘Green Prescribing’. The idea of green prescribing is to bring people into contact with nature in order that their mental and physical health is enhanced. Our proposal builds a rationale for this by referencing evidence from a range of sources, but obviously none of them are literary (that would be weird, right?).
Well, it might be unconventional, but sometimes poetry hits the nail on the head in a way that lengthy strings of referenced prose just can’t. Here’s a poem by Elizabeth Bishop, written in 1927.
To a Tree
Oh, tree outside my window, we are kin,
For you ask nothing of a friend but this:
To lean against the window and peer in
And watch me move about! Sufficient bliss
For me, who stand behind its framework stout,
Full of my tiny tragedies and grotesque grieves,
To lean against the window and peer out,
Admiring infinites’mal leaves.
The medical model of mental illness: we’re not convinced
A great systematic review has been published in this month’s British Journal of Psychiatry. It has the slightly less than tabloid-friendly title Biogenetic Explanations and Public Acceptance of Mental Illness: Systematic Review of Population Studies, but behind the dense title is a really useful and important piece of work.
Matthias Angermeyer and his colleagues examined 33 studies which looked at the public’s beliefs about the causes of mental illness, in order to find out whether there is a relationship between those beliefs and the degree of tolerance people show towards people with experience of mental illness. This is important, not least because the shape of anti-stigma education and campaigning is determined by the causal model on which it is based.
Historically, the dominant model for public anti-stigma campaigning has been built on the foundations of the biogenetic model of mental illness, in which it is assumed that mental illness comes about primarily as a result of biochemical or genetic deviations.
Anti-stigma efforts have led to simple messages being devised, which are designed to get people to leave their prejudices behind. Under the biogenetic model, the types of messages you end up with are ‘mental illness is an illness just like any other,’ and ‘mental illness is treated with medication’.
Angermeyer’s systematic review concludes that biogenetic explanations for mental illness are correlated with less tolerance of people with mental illness amongst the general public, and therefore, basing anti-stigma work on biogenetically based causal models is an inappropriate means of countering stigma.
This is not at all surprising to me, and you if stop and think about it, it’s no wonder that the public are unconvinced by messages like ‘mental illness is just like any other illness’. The reality is that mental illness(es) are not very much like physical illness(es). We need only to think about the way mental and physical illnesses are diagnosed to realise this.
In general medicine, diagnosis typically proceeds through the identification of signs which indicate the presence of disease. In the case of diabetes, for example, it is possible to determine whether the patient has the condition by measuring their blood glucose level. The patient may have been experiencing symptoms such as feeling thirsty and tired. These symptoms, although they do indicate the possible presence of the illness are not sufficient for a diagnosis of diabetes – the physician relies upon the results of a blood test (a sign) to make a confident diagnosis.
Psychiatric diagnosis does not work like this. Although it is assumed that there is a biological dimension to mental illness, there are no definitive physical indicators of mental illnesses which categorically and objectively confirm the presence or absence of a mental disorder. It isn’t possible to determine, say through measuring their serotonin level, whether a person is suffering from depression; nor is it possible to diagnose psychosis through carrying out a blood test or x-ray. Instead, psychiatric diagnoses are made by way of observation or reporting of ‘symptoms,’ which are nearly always subjective judgements about what people say and do.
The truth is that, whilst it seems there may be some biological and genetic factors in mental illness, the science is not sufficiently advanced to be able to be clear about what they are and how they act. Not only that, but, to a much greater extent than with physical illness, the social and political dimensions in the construction of mental illness are controversial.
Therefore, oversimplified, biogenetically based anti-stigma initiatives are destined to fail because they don’t acknowledge or attend to the true complexity of mental illness. They do little to engage with people’s genuine uncertainty about why mental illnesses come about, and their legitimate fears about the sometimes worrying ways in which mental illnesses affect people’s behaviour.
One of the reasons why anti-stigma work has so far tended to insist on keeping biogenetic explanations at its heart may be to do with psychiatry’s need to assert its scientific credentials in line with other medical specialisms. I particularly applaud Matthias Angermeyer and his colleagues for drawing attention to this possibility in their concluding remarks. In asking whether the insistence on neuroscientific emphases in public education about mental illness is really in the interests of patients, they show a refreshing humility, which should be welcomed by psychiatrists, scientists, and patients.
Nudging towards organ donation: Wales leads the way
Today, the Welsh government has published proposals to change the way organ donation is organised from an opt-in to an opt-out system. The soft opt-out system they propose would allow people to register their preference not to donate, and would include some flexibility so that families can still refuse that their loved one’s organs be donated after they have died. The Welsh government said that a bill will be introduced in 2012, legislation in place by 2013 and the system up and running by 2015.
In the UK, around 8,000 people per year need a transplant, only 3,000 operations are carried out, and more than 1,000 people die each year while waiting for a transplant. Despite the fact that repeated surveys have shown that a significant majority (about 90%) are in favour of organ donation, less than a third of citizens are on the donation register. If people believe in the practice in principle, why do they not add their names to the register?
The mismatch between the survey data which tells us people are supportive of organ donation and the low number who register, strongly suggests that the reason is not unwillingness to donate. It may be as simple as people not getting round to it, but many people don’t get round to making much-needed wills either. It seems likely that many of us aren’t keen to contemplate our own deaths. There may even be fleeting flickers of superstition that the possibility that preparing for death might bring it about.
If this is the case, shifting to a system of presumed consent is surely a good idea. This is a perfect example of Nudge in action – change the choice architecture to one of presumed consent, reflecting what we know about people’s support for organ donation, and the inertia of the public is bypassed to ensure that as many people as possible donate their organs after death.
After a taskforce report in 2008, the UK government decided not to go with an opt-out system. Since then, a number of other measures have been implemented or proposed to increase the number of registered donors.
Earlier this year, a soft Nudge was introduced with the addition of a compulsory question about organ donation to the driving licence application form. This idea behind doing this is to get more people to sign up to the register by making it something embedded in what they are already doing. Although it might help a bit, this sort of measure is pretty pale in comparison to the Welsh proposal.
Last month the Nuffield bioethics committee recommended that the NHS should pay the funeral expenses of those who donate their organs, raising ethical questions and bringing the suggestion that this could be the beginning of a slippery slope towards payment for donation. Such a move certainly brings the possibility of destabilising the altruism currently intrinsic to the donation of organs.
Arguably, the opt-out system undermines altruism, given that it bypasses the making of an active decision to do something selflessly. But if the opt-out system enables people to act on something they agree with, and at the point of their own death to give life to someone else, this is surely a good thing to do, regardless of whether it meets a tight definition of altruism.
Join the organ donation register here.
Mistakes, integrity and being a professional
Last week it was reported that a doctor who had made mistakes in over 20 operations was returning to work. The doctor in question, Gideon Lauffer, made some serious errors while practising as a general surgeon, including two which led to the deaths of patients. In 2007, Mr Lauffer accidentally perforated the bowel of Terry Harris, a previously fit and healthy 68-year old, during a routine gall bladder operation, and Allan Scammell died from blood poisoning after Mr Lauffer sewed his bowel to the wall of his abdomen, also in 2007.
The General Medical Council recommended that Mr Lauffer be struck off, but the ultimate decision was in the hands of an independent panel. The panel decided to suspend Mr Lauffer for a period of 6 months, and then to allow him to return to medical practice with strict conditions imposed. He is now working at St. Thomas’s hospital in London, where he is practising as a junior A&E doctor. He is being retrained, working under the close supervision of consultants, and the GMC maintain close contact, keeping his case under review.
Unsurprisingly, considerable controversy surrounds Mr Lauffer’s return to work. The Times ran with the story on its front page last Thursday, describing his return to work as a ‘scandal’. The Daily Mail wrote of ‘fury’ at the surgeon’s return to work and the Telegraph said the case raised questions over the GMC’s ability to protect patients.
Mr Lauffer took the opportunity of the media attention to apologise to his former patients and their families for the mistakes he made. I completely understand how those who lost loved ones as a result of Mr Lauffer’s errors might feel that he should be permanently banned from being a doctor. However, the decision to allow him to undergo retraining, and then to return to medical practice – as a physician as opposed to a surgeon – is not obviously wrong, and raises important ethical and social issues.
It is tragic that two people died and others suffered as a result of Mr Lauffer’s incompetence, but I do think it is important to remember that his actions were mistakes and not deliberate. He may have shown himself to be an incompetent surgeon, but that does not make him a criminal.
Being an incompetent surgeon doesn’t make you an incompetent physician any more than being a poor court room advocate prevents a lawyer from being able to offer clients the best legal advice. If Mr Lauffer is an entirely competent physician, and if it is possible for him to retrain in non-surgical medicine and be able to practice safely, then why should his past mistakes prevent this?
There are two important issues here, which need to be distinguished – protection of patients and retribution.
As far as protecting patients is concerned, provided that Mr Lauffer is banned from surgery, and that he receives proper training and supervision, there is no reason to believe that his failings as a surgeon make him any more of a risk to his future patients than if he had never practiced as a surgeon at all. As far as retribution is concerned, he has not been convicted of a crime – his poor surgery was negligent – and the remedy is compensation through the civil courts.
Unless a medical practitioner has committed a crime, I think it is absolutely right that regulatory panels base their decisions on forward-looking considerations, and not be guided by principles of retributive justice.
There is, however, a sting in the tail. Mr Lauffer was in fact disciplined not just for performing incompetent surgery, but also for performing an operation knowing he had not had appropriate training, for covering up his lack of training, and failing to admit (in the case of at least one operation) his mistake.In my view, if a doctor lacks professional judgement, or is shown to be dishonest, this almost certainly renders him or her unfit to practice as a doctor in any branch of medicine. So, although I think the treatment of this case by the press was pretty scandalous, I’m not convinced that Mr Lauffer ought to be continuing his medical career at all.
Sympathy for the psychiatrist
Robert Whitaker writes in the current RSA journal that psychotropic medication is less safe and effective than is commonly believed. The use of antidepressant and antipsychotic medication is widespread, and Whitaker presents troubling evidence that taking these drugs can increase the frequency of relapse and reduce the chances of getting well and staying well. He presents evidence that patients who never take medication fare much better in the long term than those who accept medication early on. Whitaker is not alone in drawing attention to the unstable foundations of psychiatric prescribing.
The psychologists Richard Bentall and Joanna Moncrieff have both urged us recognise that the notion that psychiatric drugs correct imbalanced brain chemistry is a myth. It is a myth that has taken hold in the public consciousness to a very great extent. Moncrieff, like Whitaker, explains that these drugs in fact do no such thing. The drugs act on our brains in such a way as to make them function differently and in doing so change the way we feel. Moncrieff explains that these medications produce drug-induced states which mask or suppress emotional problems. She does not say that we should stop using them, but suggests instead that patients should consider whether they want to use them with greater awareness of how they work.
This is tricky territory for non-experts like me to negotiate. The public misconception that mental illness is caused by brain chemistry being out of kilter is one problem. The poor long term outcomes for patients prescribed psychiatric medication is another. The fact that some patients’ severe suffering is ameliorated in the short term by the use of such drugs cannot be denied. It is clear that the issues raised by conflicting evidence in this field are very concerning, and the voices drawing attention to them are becoming louder and more numerous.
The overall effect is of an attack on the orthodox methods of contemporary Western psychiatry. The principle labour of psychiatrists has become to diagnose and prescribe, and medication is the first line treatment for the majority of patients who come under their care. As evidence builds that such medication is neither a cure, nor always a benign intervention, there is a danger that psychiatrists get demonised as unthinking peddlers of poison. A couple of weeks ago I wrote about the problem of the stigma of mental illness. It might not make me popular, but I do have some sympathy for the psychiatrists and wonder whether they are also becoming stigmatised.
It is important to remember that psychiatry is a relatively young discipline. There remains an awful lot that is yet to be discovered about what really causes mental illness, and some of the exciting action in the psychiatric field is in neurobiological and genetic research. But it is also in the psychosocial arena, as the importance of social connectivity, mindfulness and physical exercise become ever more apparent. Although it is clear that the drugs being routinely prescribed are in some ways rather clumsy, don’t work for everyone, and bring with them unwanted side effects, it is not the case that they are exclusively bad, or that they are dished out in bad faith.
The evidence that the drugs might worsen long term outcomes is worrying, but we must remember that this is relatively new evidence and that it takes time to acquire and properly analyse. However, there is a danger that psychiatry has already painted itself into a corner whereby it is only capable of regarding mental illness as a set of neurobiological components with the driving aim being to separate and identify them, and then develop the correct psychopharmacological intervention. So while it is an exciting time for psychiatry, it is imperative that psychiatrists take this opportunity to extricate themselves from the clutches of Big Pharma, and open themselves up to the possibility that drug-based treatment should no longer be the first port of call. If they do, then I can envisage a future in which patients are sufficiently informed and reflective to confidently demand to be supported through episodes of mental illness without medication, and psychiatrists become more holistic, discerning and flexible in their approach to treating their patients.
Mental illness: the last taboo?
People with mental health problems are the last minority group against whom it’s socially acceptable to discriminate. Sometimes this discrimination comes about accidentally or covertly, Lisa Appignanesi’s recent piece in the Guardian being a case in point. Appignanesi writes that the mental illness ‘industry’ is medicalising normality to a greater extent than ever before. She raises the question of whether the apparent increased prevalence of mental illness is genuinely down to a rising toll of suffering, or whether we have collectively learned to complain more. Appignanesi suggests that the more evidence there is about the increase in mental disorder in the public domain, the more likely we are to label our own problems of living as requiring the attention of a doctor. She goes on to suggest that attending reading groups or going running might do more for sufferers of depression than taking medication and questions the usefulness of psychiatric classification in helping people deal with the problems of their lives.
While I’m sure Appignanesi does not intend to cause offense to people with serious mental health problems, there is a dangerously stigmatising undercurrent to her argument. A distillation of the points she makes might roughly translate as “There’s nothing much wrong with you, you don’t need any pills, pull yourself together.” This might be a useful message for someone who’s struggling slightly with a mild case of the blues, and has the wherewithal and capacity to make a few positive changes in their life. But, for someone with a seriously debilitating mental illness, it is a potentially very damaging message.
A serious problem which Appignanesi does not attend to, is that the category of ‘mental illness’ is extremely dense. ‘Mental illness’ is no more a discrete entity than is ‘physical illness’, and no physician would deign to lump diabetes in with cancer when trying to understand patients’ ways of dealing with their illness. So, when we talk about mental illness, we might be referring to depression, anorexia, schizophrenia, or any of the other 300 or so disorders in the DSM. Within any one of those diagnostic categories lies a huge variation of patient experience and no two cases of any one of these conditions is ever the same. Just as we all have different pain thresholds, we all have differing levels of resilience to mental distress. But, whatever your threshold, there is a level of serious mental suffering which is as intolerable as the most excruciating physical pain. Within the classification of depression, there exists a whole spectrum of experience ranging from unpleasant but bearable gloom which allows one to continue functioning, right down to crippling despair which makes it impossible to get dressed in the morning or go to sleep at night. For those at the dark end of the spectrum, attending a reading group or going for a run are utterly inconceivable activities, and no substitute for proper medical intervention.
Appignanesi is caustic about the use of antidepressants, and it seems to me that this might be because she has in her mind people who are just a bit down in the dumps rather than those who have a serious mental health difficulty. The ‘definite lift’ Appignanesi tells us participating a reading group provides would certainly not have helped Sandra, a woman I met some years ago, who at that moment was desperately waiting for her annual ECT treatment. She told me that ECT was her lifeline, the only thing that lifted her depression sufficiently to make her life liveable, and that without it she would have killed herself ‘several times over’.
I think the point Appignanesi is really trying to make is that it has become very easy for pretty much anyone to walk into the doctors, have a bit of a moan, and leave with a diagnosis of depression and prescription for Prozac. Cultural factors have made it possible for mental illness to be a lifestyle choice. If you can’t be bothered to exercise, eat well, engage in wholesome activities like reading groups, you don’t have to take responsibility anymore because you can just opt for the convenient excuse that you’re ill. Once your GP has agreed that you’re ill, you can slip into the role of patient, and passively wait for treatments to work and experts to make you better. The overlapping agendas of pharmaceutical companies, the health service, and government have come together to feed this situation.
Although Appignanesi’s attack of the usefulness of psychiatric classification is understandable, what we need to understand is that there is a difference between everyday, normal suffering and serious mental illness which requires specialist intervention. It is true that deciding on the cut-off point at which normal suffering becomes mental illness can only be determined using subjective means, and that the boundary is inevitably arbitrary. I agree with Appignanesi that there is something crazy about a world in which literally any kind of idiosyncrasy can be identified as a symptom of mental illness, and that there is a complex range of reasons which explain the apparent increase in prevalence of mental disorder. But, we need to exercise caution when drawing attention to these problems because there are real dangers associated with arguing against the medicalization of ‘normality.’ Firstly, that people who are really suffering and genuinely need help are not taken seriously, and secondly that the advantages that come with understanding that mental health is on a spectrum which we all occupy, are lost. Or in other words, that the stigma of mental illness is encouraged. People with mental health problems are routinely discriminated against at all levels, and normalising mental illness is a far more urgent priority for social progress than is preventing the medicalisation of normality.
Nike+, the Verdict and a Challenge
Furthest yet!
About six months ago I started using Nike+ both to help me run more regularly, and as a simple example of how design and technology could be used to enable and encourage behaviour change. Since then I’ve not exactly turned into Usain Bolt, but I have run on average once or twice a fortnight.
Come to think of it, the experiment may have been more effective if I’d leveraged Matthew Taylor‘s competitive edge, who bought a Nike+ at the same time, but I haven’t yet been bold enough to pitch my fledgling running skills against him.
So far, so good, but now I’ve decided to up the ante by testing my new level of fitness on a half marathon (still a bit of a challenge, as the furthest I can run is about five miles).
I’m running in support of Practical Action – a great NGO who work in Latin America, East Africa, Southern Africa and South Asia and use appropriate (often quite simple) technology in a people-centred way to make people’s lives better. In their own words:
“Practical Action has a unique approach to development – we don’t start with technology, but with people. The tools may be simple or sophisticated – but to provide long-term, appropriate and practical answers, they must be firmly in the hands of local people: people who shape technology and control it for themselves.”
Graphical GDAs
Here’s a day of results from last week’s food diary. I’m pretty sure that Edward Tufte wouldn’t approve of the indulgent use of colour and needless ink, but I like it. Each column shows my percentage Guideline Daily Allowance (GDA) – for Energy, Protein, Carbs, Sugar, Fat, Saturates, Fibre and Salt. The closer the column’s height to 100%, the better. Within each column, the different colours show the contribution made by each of the items of food I had that day. You can click on the picture for a bigger version.
Wednesday's Diet
Let me know if you think of any other ways of displaying the data.
The main result from my diary is that I’m really variable – most days I eat less than I should, but some much more. The other thing is I don’t get anywhere near my 5 a day.
It was rather fun to do, but it takes a lot of time to keep a detailed diary. One of the advantages of using a phone application to keep track might be that it could take the pain out of entering the nutrition data from each packet. I thought at first it might be able to do this by taking a photograph of the nutrition data and automatically recognising the numbers, but there are still so many different formats for nutrition tables that I’m not sure that’s really viable. Perhaps using a phone’s camera to scan the barcode might work better? If this could be linked to the nutrition data provided by websites like The Daily Plate, then you’ve got the beginning of an easier way to keep track.
Dork’s Diary
Jamie's Diet Diary
Just because I like to embarrass myself, I thought I’d do a quick post to let you know that I’m keeping a diet diary this week – I’m a bit bashful about it.
I’m doing it partly out of interest, and partly as a mini-prototype of what it might be like to use a persuasive mobile-phone based diet diary – an idea that Stephen and I talked about in the comments of this post.
It has been a bit of an eye opener so far. My guideline daily amount of kilo-calories is 2500, but yesterday I’d already gobbled up over 4000 by the time I got home from work. By the end of the day I’d eaten 5308 kcal (two day’s worth!) [Actually the real eye-opener is that I obviously can't tell the difference between kilojoules and kilocalories - I only had 1808kcal yesterday, 692 too few...]. I’ll do a more detailed breakdown of results at the end of the week…
The benefit of a mobile phone application to help me keep track of my diet is that it could reduce the risk of (accidentally) under-reporting what I eat – either by forgetting to enter something in, or by losing track of what else I’ve eaten that day. My mobile is almost always in my pocket, so it could be a good platform for designing something a bit more engaging than my paper prototype.
Allowing me to self-monitor by giving me feedback and a target is one thing – it enables me to monitor my diet, but what’s the next step? How could a mobile phone app encourage me to change my diet? Should it make suggestions by recommending me what to eat to keep to my personal target, should it use surveillance (or social proofing) to make my diet visible to my friends and vice versa? How could it encourage healthy eating rather than extreme dieting?
Here’s a relevant statistic for these cost-cutting times: “The NHS costs attributable to overweight and obesity are projected to double to £10 billion per year by 2050. The wider costs to society and business are estimated to reach £49.9 billion per year (at today’s prices).” said Foresight, in their recent Tackling Obesities: Future Choices project.
RSA pioneering a new approach in the misuse of substances field
I mentioned a couple of weeks ago that the RSA is once again delving into the drugs world. We’re set to officially launch the project next month so the excitement is building not only around the new user-centred approach based on action research that the project will be piloting, but also around how it’s going to be received out there, by our Fellows, by the media, by my blog readers.
User centred, personalisation, co-production, individual budgets are increasingly appearing in discussions around public services where the ambition is to put people at the centre of the development and delivery of service and support. Empowering people to take control of their own lives, direct their own care services, or health treatments is becoming common place in support, health and care services.
We believe that drug services are a public service that would benefit from these sorts of approaches and even prove to be an exemplar for these discussions.
Look out for information about the project launch on our website. If you would like to join the project mailing list for updates on our progress please email drugs@rsa.org.uk.
RSA Animate
RSA Mobile
