|A depressingly corporate venue facing the manic sea...|
Friday, 17 October 2014
The Bipolar Crowd
...at the Royal College of Psychiatrists 2014 Annual Conference of the Faculty of General Adult Psychiatry: ‘Reshaping Medicine’, 16 - 17 October 2014 Hilton Brighton Metropole.
Not a happy day - not only did we lose the debate (badly) - but it was even more badly after Peter Tyrer and I gave our talks. Although I think it's fair to say that we were given an almost indefensible position to argue: 'This house believes that the current diagnoses of bipolar II disorder and borderline personality disorder are indistinguishable’.
Click here for the link to the official RCPsych page on the conference.
But, expecting a bit of rough-and-tumble about different ways of understanding BPD and bipolar, I was ready for anything, or so I thought...
But after meeting this lot, and a discussion that seemed preoccupied with genetics, diagnostic precision and academic jousting as only male white London Maudsley-types can do, I slunk away on the next train to East Croydon (with fond memories of platform 6 waiting for the Tattenham Corner train every day after school...). If this is way they are wanting to 'Reshape Medicine', I'm not sure I want all that much to do with it!
So this is what I said.
It went down like the proverbial lead balloon.
Judge for yourself...
Thanks so much for having me along to talk in this debate – I’m rather nervous about being here as I can’t work out whether I’m a fish out of water, or coming into the lion’s den. Maybe I’ll be able to tell you which – or hopefully neither – by lunchtime.
But when Peter asked me to be his second, I jumped at the chance – because I do feel that the world of personality disorders has been unhelpfully isolated from mainstream psychiatry – with most of it happening more in psychotherapy and in psychology – neither of which are sufficient to deal with the complexity, or hold the risks, of the more severe cases. And in many places, suitable services for PD do not exist at all.
But there are a lot of good and manualised treatment programmes, with the right sort of evidence base to be commissioned, mostly run by psychologists, psychotherapists and nurses – but they are often delivered without medical input. So these will only ever help the less severely disturbed patients – who are ready and willing to accept therapy programmes. The more troubled people – who can cause whole systems and teams high levels of stress and disruption, and can get unhelpfully stuck on psychiatric wards for long or repeated admissions – will be with us psychiatrists forever, not least because they are extremely mentally unwell.
So I think PD needs to be, at the heart of all psychiatric practice. I’m one of that fairly rare breed of medical psychotherapists who specialises in PD – and the only one who does so in Berkshire (population 850,000) - so unless the NHS decides it needs a lot more of us (which doesn’t look at all likely at the moment), it is going to be up to you the general psychiatrists to do something helpful about it, for the vast majority of patients who could be diagnosed with PD.
To start with a quick bit of biography, which takes me back to the first things I learned about psychiatry - from elective modules in Social and Political Sciences – where, in what was a hotbed of radical and critical thinking, it’s hardly surprising that we studied Laing and Szasz – alongside things like psychoanalysis and feminist theory in the late 1970s.
Of course Ronnie Laing was still alive then, and he was guest of honour at the annual MedSoc dinner that year (although sadly incoherent with the abundance of fine wine on High Table). But it was with these ideas fizzing around in the back of my mind, that two years later, I was about to have my first ever encounter with clinical psychiatry, and start as a clinical student at Littlemore Hospital in Oxford, on Bertie Mandelbrote’s firm, the Phoenix Unit.
I had been warned by previous students that this was not somewhere to wear the normal tweed jacket and sober tie (which was the standard medical students uniform for psychiatry at the time).
So I kitted myself out in a big red sweater and jeans, and I arrived there on a bicycle a couple of minutes after the suggested 8.30, and met a bloke wearing hardly any clothes sitting on the doorstep smoking a roll-up. Without any words, he casually pointed me in the direction of a large dilapidated room - where I soon had to forget any ideas I had of hospital hygiene, with most people smoking and a thick fog I could barely see across. I expect they would go bananas nowadays if the infection control matron or the health promotion people saw it.
I squeezed into the room between two people’s backs, to be confronted with a large circle of chairs - perhaps 40 people - where it wasn't possible to tell the consultant from the cleaner. I had to find my own chair on the other side of the room and pull it up next to a large restless man who just looked at me and laughed. "What's your diagnosis then, eh? You must be manic like me with a jumper like that." He trumpeted this at about 120 decibels, and I just wanted the ground to swallow me up and go back to proper medicine. There was an excruciating silence (probably all of twenty seconds) before everybody introduced themselves.
After my initial culture shock of joining a therapeutic community, for that’s what I had landed in, I went on to thoroughly enjoy it. I found something completely different about the way people were with each other - I learnt my psychiatry the same as other students who were on traditional wards, but I also got an inkling of something that is very hard to define or put in words. It was something about being allowed to be yourself, about playfulness, and creativity – just being human together yet also be able to be fully professional. And I have been looking for ‘it’ and thinking about ‘it’ ever since – that quality of relationship - as I have moved from general practice to psychiatry to group analytic psychotherapy to personality disorder. A general term for it is ‘therapeutic environment’, and we have done a lot of work at the College’s CCQI to develop the ‘Enabling Environment’ award – which is a College kitemark to show that a ward or unit ha8s got it.
So I have been working in the personality disorder field for twenty years now – in several different places, including nearly nine years as clinical advisor to the national PD programme, which shut in 2011 in the wake of the financial crisis. Its work is now rather hidden away in a small corner of the IAPT programme, where I fear the complexities of PD are lost.
But until I started a new CMHT-based project last year, I hadn’t realised just how different a world it is from ‘mainstream psychiatry’ – how far apart they have grown - and I have been quite shocked at what I have come back into. The project is to get ‘revolving door’ and long-stay patients out of hospital and onto genuinely therapeutic pathways – and hopefully have them never admitted again. So far, with a day a week of me and a team of four – STR worker, social worker and MH nurse led by a counselling psychologist, we’re doing fairly well at that. Many many bed days in the previous year and almost none since. I think the important thing we do is to take a vigorous biopsychosocial approach – and immediately engage people with a detailed assessment and mutually agreed biopsychosocial formulation. Then lots of relationship-building, followed by psycheducational and psychosocial group work - which does lots of peer group relationship building.
The diagnoses of the people referred to us can be anything – although most commonly Borderline and Bipolar. Though I’ve noticed that the local vogue seems to be away from using the ‘borderline’ word, and favouring the crisp sounding four-letter abbreviation ‘EUPD’ (everything has to have an abbreviation or, even better, an acronym nowadays). And bipolar, of course in its big-tent ‘everybody welcome here’, socially acceptable, manifestation - of bipolar 2, 3, 4, 5 , 6 or however many it has got up to nowadays.
I’m going to make two specific arguments for the topic of the debate, and frame them as ‘provocations’ - being provocative to the currently accepted wisdom and practice. They are (1) Diagnosis is only an opinion, and the more exact we get at operationalising it, the more useless and dangerous it becomes. (2) This is becoming a turf war between different psychiatric factions, and is of no benefit to patients themselves.
So, to start with the first of the provocations:
Diagnosis is only an opinion, and the more exact we get at operationalising it, the more useless and dangerous it becomes.
I remember doing my mock clinical MRCPSych part ii exam, as it was then, in about 1990 – it was a long case followed by a long grilling by some severe and sadistic senior registrar. Very good for us. My patient was what I would nowadays spot in two minutes as severe borderline – and I presented all the history and the mental state examination in the very structured way we were expected to do it, followed by differential diagnosis. I made the mistake of putting BPD at the top of my list, with schizoaffective, agitated depression, dissociative disorder – and I expect a few others – underneath. Big mistake! I was roundly chastised for daring to suggest PD was the main proposed diagnosis – and strictly told that we do not make a PD diagnosis if there are other possibilities, and it must be at the very bottom of our least – because it is an unhelpful diagnosis for patients, it is not scientific and – anyway- it is untreatable.
Nowadays, I encourage trainees to always think of PD – after all, we all have personalities, and nobody’s is perfect – and to do so as the underlying structure on which various psychiatric symptoms, conditions and disorders hang. We use the IPDE screener to get a ‘standardised’ idea – but the more important part of the assessment is the detailed history of emotional development, an often long history of troubled relationships, the underlying feelings of strong or fragile selfhood, and the quality of relationship or rapport it possible to build in the room. From that comes a formulation which we co-produce (ghastly word, but good concept) with the patient – so it is an agreed statement of why they are like they are.
Only then do we turn to diagnosis – and I always explain that, particularly in this area of psychiatry, it is an inexact science. We look together (there’s usually 3 or more of us in the room – it helps prevent difficult dependent dynamics) at the IPDE screener and the history and, usually, end up explaining that the diagnosis that fits best is BPD. If somebody strongly disagrees, I will not push the matter, but leave it there for now. The most important thing I often feel is that I (or one of the other staff) says to the patient that all that work of assessment and formulation shows us very clearly ‘that they are in the right place’ and our programme is likely to help them.
Engendering hope carries much more weight than ‘delivering the bad diagnosis’ of BPD. In the national PD programme, we found that it was a fairly even split between people who were upset by the diagnosis and those who were
relieved by it. There is, I think, a lot to be said against the simple juxtaposition of the two words ‘personality’ and ‘disorder’ in how it sounds like your whole personality – almost everything about you- is in some way bad. And Geraldine Strathdee ducked a question about NHS resources for PD a couple of weeks ago by saying how she prefers to see it as ‘complex trauma’. But more important than the words is what goes with them. If it is a ‘therefore we don’t have any services here that can help you’ it will be perceived as yet another painful let-down and rejection; if it is ‘come along to such-and-such a session here next week’, some hope may be felt and a therapeutic relationship started.
People often ask us ‘what about these other diagnoses I’ve been given’ – and we talk through them. Bipolar is very common, and our general advice is that there is a great overlap between that and BPD – and it doesn’t add anything to help them to make fine distinctions between the two. The wording of ‘EUPD’ is worth looking at too: ‘emotionally unstable personality disorder’, in its very title, implies that mood and feelings will not be stable and remain the same all the time: how different is this from the rapidly swinging mood of the newly invented bipolar spectrum? And how could we tell even if it was different? And why do we make out that it matters?
I can think of two reasons: inability to tolerate uncertainty, and self-interest.
If we treat psychiatry as a purely biological discipline, we are making progress by becoming ever better by doing sophisticated regression and cluster analyses to ‘carve nature at the joints’ by diagnostic precision. But I would contend that that has now gone much further than can be justified by the evidence. The whole thrust of biomedical research has been to know what we have not known before. But what if it is not worth knowing – and there are many more interesting things that would have more positive effects on public mental health? That is a value judgement, and I suppose it comes down to the value that I have that a whole-picture view of somebody (including the biological) and a process that involves empathic human contact and building of a therapeutic relationship is to be valued more than minute dissection of superficial symptoms and signs. I am very happy to tolerate the not-knowing of a diagnosis, as long as an effective therapeutic process is happening. And ‘effective’ in that sentence means valued by the patient so they are likely to come back next time, and be developing some trust in what is happening.
The second, though, self-interest, is much darker – and from reading Joanna Moncrieff’s recent paper about ‘the marketing of the new bipolar disorder’, really rather sinister. She describes how the concept has changed – thinking back to that mock MRCPsych exam, I wouldn’t have even thought to include ‘bipolar’ in those days – we still knew it as a devastating mental illness called ‘manic-depressive psychosis’ - which was quite uncommon, and certainly not to be diagnosed lightly. The prevalence was said to be 1% although only a tenth of that number were ever hospitalised for a classic manic episode. 1998 figures claim that the incidence of full-blown mania was 5% with another 11% having the diagnosis of ‘bipolar II’. By 2003, the figure of what is now called ‘bipolar spectrum’ had increased to 24%. If you plot this on a graph, we will all have it in a few years.
Which is probably more accurate anyway – as irritability, bad mood, excitement and dejection, worry, occasional overactivity and spells of lowish mood are part of normal human experience, at least as I know it.
So, in the last two decades, it has become one of the most widely diagnosed mental disorders, and most commonly treated with either anti-epileptics or atypical neuroleptics. And this change has come about by the psychiatric profession, mostly but not only in the United States, gradually changing the diagnostic criteria – as using popular media and the internet very effectively to publicise this ‘new condition’ and – of course – the pharmacological remedies for it. Joanna Moncrieff describes how this all came about through intensive work programmes of professional research bodies and journals, mostly funded by the pharmaceutical industry. Here’s a couple of quotes to give the flavour of it:
In 1997 the Zyprexa product team predicted that sales projections would increase more than fourfold if olanzapine could be viewed as a Depakote-like mood stabiliser than as a risperidone-like antipsychotic
Lilly formulated the concept of ‘complicated mood’: consisting of symptoms like irritability, anxiety, disturbed sleep and mood swings. Sales representatives were instructed to emphasise the broad action of olanzapine, and to encourage GPs to identify anmd prescribe to ‘higher functioning’ people at the ‘low to middle end’ of bipolar severity.
It certainly shocks me, in my clinical practice, about the number of people coming through – with or without diagnoses of bipolar – on olanzapine, valproate, carbamazepine, as well as full dose SSRIs. It shocks me in ethical terms that we now live with a health service where people who are experiencing ups and downs in their lives now commonly can just go to their GPs to get co-called ‘mood stabilisers’ and justify it to themelves, and their families and friends and employers, by calling it a ‘chemical imbalance’.
At least if somebody’s lifestyle choice is to take ecstasy or cocaine, they have to go out and find it and then pay for it!
So onto the second provocation:
This is becoming a turf war between different psychiatric factions, and is of no benefit to patients themselves.
In the national PD programme, we have also used arguments about the number of people not getting the treatment they need – and saying that 13%, or 5% of the population need treatment programmes for PD. Behind this argument is the belief, that for me is grounded in clinical experience, that people with PD – particularly the more distressed and florid manifestations of borderline – get a really bad deal in our services, and are often made worse by insensitive staff and rigid systems. This is not just mental health (though we are particularly bad at it) – but social services, housing, criminal justice (particularly women), A&E, many but not all GPs. Interestingly, and maybe this is only locally true, the police are quite well-liked by our patients – and we often hear stories about how they are more sympathetic than therapists. But maybe that’s just splitting!
We also like to claim that we are talking about profoundly serious mental illnesses, with the completed suicide rate for borderline POD being about 9%. So the overall picture is that this quite large proportion of MH patients (30 – 60% of inpatients, we cited in ‘No Longer a Diagnosis of Exclusion’) need better trained staff and more suitable services. And very slowly, that seems to be happening – through things like the KUF programme (who here has heard of it?), and the setting up of specialist services and specialist teams in community services.
The bottom line of what we’re saying is – we want more people treated in therapy programmes.
So what’s the equivalent argument for bipolar? Well, from what I’ve quoted a few minutes ago, the numbers are similar: barely 1% when I was a trainee (in contrast to being told NOT to diagnose it), and now maybe in the teens of percentages. The forthcoming ICD-11 changes will – with it’s proposed ‘personality difficulty’ and graded spectrum of PD severity, almost certainly put that up with the 24% I mentioned for the bipolar spectrum. But although the numbers are similar, the underlying motives for seeing an increase in those numbers are not. Ethically, I have already said that I think it very odd that people can diagnose themselves as bipolar, get a printout from an American website questionnaire to ‘prove’ it, take it along to a GP and be prescribed lifelong neuroleptics. I think it’s even worse than that, when we hear that the motive and resources to change the whole profession’s understanding of ‘bipolar’ come from the profit motive of the pharmaceutical industry – another quote to back that up, from
Confidential documents that were released in the course of legal proceedings make it clear that Lilly saw Zyprexa as the natural successor to Prozac, and the company set about devising strategy to make Zyprexa into the ‘most successful pharmacological product ever’. This strategy hinged on repositioning Zyprexa as a treatment for mood disorders that could be marketed to the millions of people who currently thought of themselves as depressed and could be prescribed by GPs as well as psychiatrists.
The story she tells for paediatric bipolar disorder is even more troubling – but that is outside the scope of today’s debate.
So, to put it in parallel with what I have just said about the PD lobby’s intentions, the bottom line is ‘we want more people with bipolar to be treated properly’.
But, as I have already argued, both are or have become very ‘soft’ diagnoses – with indistinct edges. Add that to a heavy reliance on the clinician’s interpretation of often vague symptoms – and the distinction becomes almost meaningless. Certainly, in routine non-research clinics where lengthy and precisely validated diagnostic interviews are not possible – the diagnosis will depend more on the clinician’s training experiences, the facilities and range of resources available, and established local practice.
Patients are not helped by this iron curtain between what we might call biological and social psychiatry. Aside from the lifelong effects of medication that might or might not be helping, and the necessary paternalistic type of relationship, the mechanical ‘me expert, you patient’ relationship of purely biological approaches is becoming much less acceptable to patients – many many of whom want to be advised by professionals on the whole range of options, and not told what is best for them or simply what they must think and do.
My final provocation is that most of them are the same people, who happen to have landed up in different parts of the service by something that is close to random good or bad luck. Some who land with us have no interest in or willingness to undertake a fairly rigorous and intensive programme of medium to long term psychological therapy – they need the expertise and choices that the bipolar approach would give them. Vice versa, the people with what we see as ‘biopsychosocial’ disorders landing up in a hard-line bipolar clinic should be advised on the different ways of understanding their condition, and making treatment choices based on that.
So to me, the actual question of the debate fades into irrelevance – many and perhaps most of these people have the same sorts of symptoms and backgrounds, so could justifiably attract either diagnosis. The challenge is not to get better and better at making accurate diagnoses, but to work together as a profession to offer them the best and best range of treatments to help them – and not to allow the dark and global forces of neoliberal economics to sway us from that.