To an impartial reader there was always something odd about Rosenhan’s famous paper “On being sane in insane places”. It didn’t read like a report of high-quality research of the sort you might expect in Science, and the enthusiasm with which it was received (it has been cited >4000 times according to Google Scholar) seemed out of proportion to its form and content as a single author patchily written account of an un-replicated study involving 8 subjects.
Susan Cahalan’s book The Great Pretender goes further along the road of questioning the study, making the case that the whole thing was a fraud. She was unable to find any research records related to the reported results, and when she eventually traced two of the pseudo-patients they confirmed that they had not made the detailed observations reported in the paper and indeed hadn’t been asked to. One of the two was dropped from the final report, perhaps because his experiences were too positive, and yet in the rewritten final paper (now with 8 pseudo-patients) all the other numbers were identical to the earlier draft with 9 pseudo-patients. And most damningly, when the clinical records of Rosenhan’s own admission surfaced they showed that he had lied about what he told the admitting psychiatrist, in fact retailing fairly standard symptoms of schizophrenia.
No doubt the study proved so popular because it suited people to take it at face value. Psychiatry was in a dire state with diagnosis almost meaningless and the abusive nature of inpatient care widely recognized. Calhan quotes Chief Bromden: “It’s the truth even if it didn’t happen”. Rosenhan had provided a stick with which to beat the system. Calahan reports that even Robert Spitzer knew some of the facts – he had apparently seen the notes of Rosenhan’s admitting psychiatrist but kept quiet because he was keen to force through a more standardised approach to diagnosis. Calahan’s conclusion overall: “The messages were worthy; unfortunately the messenger was not”. Although at the same time as apparently approving of the function of the report in highlighting the need for change in psychiatry, she recognizes the problems with the way the paper was used. It formed part of the rationale for an aggressive deinstitutionalisation which has had catastrophic effects on care of the severely mentally ill in the USA, and it helped feed the growth of the DSM behemoth.
The ambivalence of Calahan’s conclusion is at odds with her book’s unequivocal title, and it started me thinking. If fraudulence and integrity exist in science, how shall we know them? My preliminary take on this is that researchers who misrepresent research fall into four categories, of course with blurry boundaries. It isn’t entirely clear that we know what to do about any of them.
The out-and-our fraudsters. Burt, Wakefield, and now Rosenhan are infamous. They just made stuff up. The list of members of this group is long and will grow. Of course we call out individual studies, but what of the individual academics? Is everything they ever researched to be negated? Lance Armstrong’s Tour de France wins are no longer acknowledged, but every other race he won?
The embellishers. Perhaps not everything they wrote is made up, but there is no great clarity about which bits were truth and which bits weren’t. To my mind the most under-acknowledged member of this class is Oliver Sacks. He was coy about it, but clear enough: “I mean, perhaps it’s a case that I seized on certain themes, imaginatively intensified, deepened, and generalized them. But still”. Or again: “I don’t tell lies, though I may invent the truth”.
And yet Sacks has never, to my knowledge, been called a fraud. Why not? Perhaps because some of the content of his cases would be familiar to many clinicians in the right specialties, and therefore everything he wrote clearly wasn’t made up. Even more so than for the out-and-outers, we can’t be entirely sure how much of the output of people in this group is trustworthy, and therefore what we should do about it.
The spin doctors. Here the behaviour is nothing like making up results; it’s not fraud. Most typically it involves secondary research, reviewing and synthesising the findings of others. This is a difficult skill to get right (see my fourth group) but the efforts of the members in this class are so wilfully wide of the mark, their failure to raise uncertainties or to consider biases so glaring, their findings so predictable from their pre-existing position on the question at hand, that you have to question motives rather than competence. These are academics who should know better. During the pandemic, Heneghan’s approach to COVID transmission is one contemporary example. In my own field I place Kindeman’s outrageous claim that there is no more evidence for the efficacy of ECT than there is for that of homeopathy. Here the answer seems to be attempted rebuttal rather than looking the other way, tempting though that is. Not that it’ll influence the people involved, but perhaps it’ll influence their standing in the academic and wider communities.
The academics who produce flawed evidence is a class that includes pretty much all the rest of us. We try but often get things wrong or present results in a biased way. A personal example. Some years ago, I led a programme part of which involved a case-control study exploring whether life stress might precede the onset of stroke. The answer looked like a tentative Yes and we published in a leading stroke journal. Much later I was approached to consider giving expert evidence in a case involving somebody who had suffered a stroke after a shocking event that was apparently a third party’s fault. My study was being cited. An expert for the defence had produced an eight page critique pointing out the flaws in my study and all I could say to the plaintiff’s team was “fair cop”. The main answer here is rigorous peer review and an academic climate that encourages serious adult debate about uncertainty.
This is a muddy field. Lack of rigour merges into recklessness with the facts and that merges into complete disregard for the facts. There are parallels in the wider public discussion about fake news and online media. A tighter regulatory environment may be one answer but is unlikely to be achievable at scale and with sufficient meticulousness. We need therefore to have a better, that is more critical, approach to engaging with academic and related sources. Perhaps critical appraisal skills teaching needs to include skills in appraising authors as well as their outputs…
In the latest addition to the BMJ series What your patient is thinking, an anonymous contributor writes of their personal experience of seeking help for repeated self-harm: “I am more than a body to stitch up and label”. Their conclusion is familiar and depressing “I do not expect long term input from NHS mental health services anymore, but there should at least be crisis input available for self-harm”.
I say familiar because it is no news to anybody, surely, that self-harm services are not in a fit state for the scale and importance of the task they should fulfil. Of course, a significant part of the problem is the shameful under-funding of our mental health services, a policy pursued with gleeful vigour by the UK government since the banking crash of 2008. But that alone won’t do as an explanation – we have known about poor services for decades and it’s not the first time I’ve touched on the topic in my blog yet there is still no sign of real improvement. Why is it that so little changes? Apart from the serious external constraints, I see three factors that are internal to mental health services.
The first is attitudes. I’m not going to rehearse the well-known argument about negative attitudes among staff – they exist, they’re unprofessional, they’re not universal. They affect the immediate individual exchange, but in a way what’s more important is the resulting lack of priority given to self-harm services when they are in competition for limited resources. One aspect of this that isn’t often enough pointed up is the unwillingness of clinical psychology services, and more recently IAPT, to get involved. The IAPT therapies manual (v.4, 2020) only mentions self-harm once, to say that the risk needs to be assessed without saying what to do about it. A typical local IAPT service will therefore say “In line with National IAPT standards, the service does not work with…people who present with active risk of significant self-harm”.
A second problem is muddled thinking about the nature of self-harm and especially what it means to say that self-harm is non-suicidal. The big culprit here is the idea of non-suicidal self-injury and how readily what should be (if it means anything) a description of an act becomes a description of a person. The result is that repeated self-harm is not seen as serious, or at least not serious enough, to merit special attention even though it is in fact a risk for pretty much all the poor outcomes you can think of in psychiatry.
Third, and lying behind much of these other factors, is the damaging idea of personality disorder, who you are as a mental illness, and especially the idea of borderline or emotionally unstable personality disorder. Inherent to this diagnosis is the notion that somebody has a sort of inbuilt emotional instability to which self-harm is a response. This formulation comes with a downplaying of experienced life adversity as causal, and with an over-emphasis on framing responses in terms of personal responsibility rather than need for specialist help. It flies in the face of what we know about the many reasons for self-harm that simply aren’t captured by thinking of it as a symptom of an abnormal personality.
Mental health services are off the pace here. Self-harm is a hugely important mode of presentation by people who want and need help and we should rethink how we are going to respond in more effective ways than we currently do. Otherwise we’ll be reading pieces like this one in the BMJ for another 25 years.
A spin-off from the practice of police officers wearing body cams is that the footage (in the UK) provides material for fly-on-the-wall documentaries about what day-to-day police work is like. One of the insights you learn from that TV coverage is how often the police are called to incidents where a significant part of what’s going on is explained by the mental health problems of one or more of the protagonists. And one part of that work is generated by people who repeatedly access the crisis services, either by calling 999 or by presenting their distress outside the home to others who then call the emergency services.
It is widely accepted that responses to this phenomenon of frequent crisis contact are not always effective. One recent development has been the emergence of the High Intensity Network of teams delivering what is known by the (frankly silly) name of Serenity Integrated Mentoring. These teams include both mental healthcare staff and police officers, share information and decided on a plan aimed at reducing this so-called high intensity service use. That plan can include the possibility of formal action by the police, including the use of community behaviour orders or prosecution. I have recently become aware of this scheme and of some of the concerns being raised by patients who have experience of it and by service user activists. I had been alerted to it by a friend who is a service user and activist, and from my reading of social media posts by those people seeking an investigation and curtailing of this activity. I have come to the conclusion that there are indeed some important concerns being raised: this is not just a Twitter storm in a teacup. I will outline what I take to be the main issues.
First there is the practice of sharing confidential clinical informationwith police officers. This has been justified by an appeal to the idea that people are only included in the scheme in an emergency, and that sharing is therefore in their best interests.
Here for example is a Tweet from the Network’s director. It is clear however that this idea of data sharing as high-threshold urgent action is being stretched to justify routine sharing of clinical information on all patients managed by the team. To quote the Network’s own description of the people under consideration “They are constantly an emergency case, just fluctuating at different levels of intensity, causing varying levels of impact. Our strong argument therefore is that all agencies involved in the network can share personal data and clinical data about these service users at any time, both in a preventative capacity when they are not using emergency services and in a reactive capacity when they are.”
Second, there is a question about informed consent from patients in the scheme, who must by definition have mental capacity. There is much made in HIN/SIM documents of the need for consent, and it is said that lack of consent (telling described as “refusal to engage with mentors”) must be respected.
Here is a slide from a talk given about SIM by a team member. The nature of consent in this situation is highly problematic, since it is clear that in these integrated teams the prospect of coercion remains an active option for those who engage in what the team consider undesirable behaviour and yet who “fail to engage”.
The SIM operational delivery guide confirms this overlap of processes, with clinical staff able to contribute to the discussions about police responses to antisocial or illegal behaviour and police able to contribute to discussions about clinical risk management.
Some of the vocabulary used in HIN/SIM documents is not reassuring when seen from a service user perspective. For example stating that “The project team will be dealing with service users with often high risk, malicious and litigious behaviours.” and suggesting (as in this Tweet from the director) that patients do not have the right to share and discuss their care plan with people of their choosing. The FAQ section of the HIN/SIM website notes “Our teams operate multi-agency panels each month to assess which patients should have their consent removed…”
This approach, implying a seamless move from therapeutic responses to coercive responses, is one of the commonest complaints evident in online discussion of the scheme. Because police involvement is evident in all aspects of the process then consent to participate can hardly be given without a sense of duress.
Third, there is a question about evaluation of the scheme and especially assessment of harms. A startling number of benefits are claimed for the mentoring scheme – based it has to be said on minimal evidence: in truth there has not been a substantial independent research evaluation at all, which is surprising considering how enthusiastically the scheme has been promoted. By contrast to the claimed benefits, there is no discussion of potential patient harms such as those that might be caused for example by people avoiding seeking help in a crisis or actively being prevented from doing so. Any deaths that might occur are described as accidental, including those attributed to (a new term to me) accidental suicide.
It is hard to collect citable evidence on such outcomes from informal reading because so few people are willing to come forward in an identifiable way, but I have seen them reported by reliable sources and there is no reason to doubt that they happen, even if nobody is trying to quantify them.
Complaints are likely to be interpreted in particular ways “Making complaints against staff can often be a way in which service users (at times of stress) attempt to avoid consequences or responsibility. They can also be used in an attempt to distance themselves from the staff who are supervising them so that they do not have to continue with the programme.” And staff who have to respond to what are called allegations are invited first to watch a video prepared by HIN. “The video informs the investigators about the nature of high intensity cases and the behavioural disorders commonly found in these cases. It also explains the motivations for making false allegations and common behaviours that may be witnessed after the allegation has been made.”
In summary: the approach represented by the High Intensity Network has apparently been adopted by more than half the Mental Health Trusts in the country, despite lack of robust evidence for its effectiveness or harms. Reasonable concerns have been raised about the approach to information governance and the sharing of confidential information and about the blurring of boundaries between therapeutic (health services) responses and coercive (police service) responses.
Much of the promotion of this particular scheme has been individualised around the person of Paul Jennings, a policeman who started the SIM programme in the Isle of Wight and now directs the High Intensity Network. Jennings has a rather idiosyncratic take on the issues which no doubt influences the tone of debate: he talks about mental health problems in prisons as if they are relevant to this different context, and his rationale for SIM as a response to what he calls behavioural illness is a mixture of naïve behaviourism and a sort of paternalistic encouragement to people to give up bad habits. Nonetheless, there is more to be questioned here than can be put down to one person’s influence. The problems outlined about confidentiality, consent and coercion are inherent to any scheme in which health care staff and police staff are fully integrated into a single team. There is a serious question about whether the Royal College of Psychiatrists should be supporting such developments at all. It is a worry that so many psychiatrists are likely to be involved either directly or tangentially in this way of working, without these issues being resolved. There are other ways to develop productive working relations with the police and the other agencies involved with crisis care.
Acknowledgments: There is an impressive social media presence on this topic. As a start try searching Twitter using #HighIntensityNetwork or #Stop Sim. It is activist and service user-led work that has brought the problems to the fore – critical discussion led by mental health professionals has been bordering on non-existent. The quotes in this piece come from: HIN/SIN Operational Delivery Guide (SIM London version, March 2018); SIM Business Case and SIM FAQs (from HIN website www.highintensitynetwork.org)
The coronavirus pandemic has posed some serious challenges for scientists – inherent in the novelty of the infection itself (biology and epidemiology), in the need to explain difficult research to an apprehensive public and in the desire to inform governmental policy without unduly influencing decisions that are in the end political ones. There have been some great successes in rising to the challenge – for example in the development, evaluation and delivery of vaccines supported heavily by NIHR and the NHS and in the fields of infectious disease and genetic epidemiology.
More dismaying has been the way that differences of opinion have been handled. Elements of the press have of course behaved shamefully – what else do we expect – but it has been a real disappointment to see some members of the academic and clinical communities joining in what has been at times more like a childish shouty argument than a serious discussion about a difficult subject.
Against this background, my eye was caught by the release of a document from a group called the Health Advisory and Recovery Team (HART), COVID-19: an overview of the evidence. The trailers on their website were encouraging-
“HART is a group of highly qualified UK doctors, scientists, economists, psychologists and other academic experts…Our core aim is to find the common ground between the Government and groups that are concerned about COVID-19 restrictions. The ambition is to bring all sides together and to widen the debate in order to formulate an exit strategy that benefits everyone in society…Our research has identified a need for public policy to reflect a broader and more balanced approach across a number of key areas…We must now bridge the gaps in policy areas where there is obvious disagreement. We should try to avoid bias and follow the rapidly emerging evidence to guide us. If we listen and communicate clearly and respectfully with each other we can find the common ground”.
I restricted my reading to the area I know most about, the consequences of the pandemic and its management for the psychological wellbeing (mental health) of the population. That is to the chapters on COVID policies and harm to children (actually, including young adults), the psychological impact of the Govts communication style and restrictive measures, and the benefits and harms of wearing masks.
On a (very) superficial glance this looks like a scientific review of the evidence; lots of expert-sounding people have authored sections and there are nearly 300 references cited over 55 pages. A more detailed read gives quite a different picture. One notable section (suggesting that wearing a mask is psychologically harmful) isn’t referenced at all. Newspaper articles are a cited source of evidence and often do no more than recycle anecdotes, and it doesn’t help that there are website links that don’t work.
Where properly conducted research is cited there seems to have been no attempt at systematic identification or reviewing of its findin. Primary research studies are either selectively chosen or selectively reported. Two examples: First, The Prince’s Trust, with a comment on the “devastating impact” of the pandemic, noted that an online survey of theirs found a quarter of young people reporting that they felt unable to cope with what was happening in the pandemic. What was hardly mentioned by the Trust’s press releases (and not at all in the HART report) is that there have been only slight changes in recent years in levels of anxiety (53% in 2018, 55% in 2019, 54% in 2020, 56% in 2021) and depression (38% in 2018 and in 2019, 39% in 2020, 41% in 2021). The same applies to reports of increasing rates of self-harm and thoughts about self-harm: “research shows that suicidal thoughts have increased dramatically” refers to a single study reporting a rise from 8.2% to 9.8%, 12.5% to 14.4% in younger adults. Bizarrely the original study isn’t referenced, but instead a synopsis of it published in a different journal.
This isn’t to say that reports of not feeling able to cope, or of ending your life, are trivial. But there is considerable uncertainty about their interpretation, which doesn’t get an airing here. For example, it isn’t clear what the link is between mental health and feelings of not being able to cope if the one changes sharply but the other doesn’t. The meaning of “suicidal thoughts” can be difficult to interpret without a lot more detail than a questionnaire can provide, and the link between such thoughts and suicidal acts or suicide itself is not straightforward. One thing we do know is that a decline in young people’s mental health and increase in self-harm rates is a decade-long phenomenon, associated with social, educational and vocational inequalities and loss of community resources, not something that can be attributed to the pandemic or its management.
The authors describe this report as a rigorously and widely researched document and we have a pretty good idea what rigour in reviewing evidence should look like. After all, David Sackett and colleagues published Evidence based medicine: what it is and what it isn’t in the BMJ in 1996, the Cochrane Collaboration began its work in 1993, and the Journal of the American Medical Association launched Its series on step-by-step critical appraisal in 1993. Set against such guidance the HART overview doesn’t come anywhere close. The parts I have reviewed are more like personal statements of opinion dressed up as science, with conclusions expressed in over-certain and melodramatic ways – crisis, devastation and catastrophe are part of the vocabulary of journalism, not critical appraisal.
Perhaps all this doesn’t matter too much? The report was written to influence a decision about managing the pandemic in the UK and that decision has now been made.
So as a single incidence it will probably disappear from view, but more generally the bias and tone of pieces like this do need to be challenged. They are bad news for several reasons. Mixing polemics with science just strengthens the arm of critics who want to represent academics as opinion-mongers who dress up their own prejudices in pseudoscience. It oversimplifies the public policy dilemmas posed by the pandemic, which are more complicated than lockdown-don’t lockdown. But perhaps most importantly it muddies the waters so it is hard to see what the real problems are; anybody sensible thinks that the pandemic is likely to have mental health consequences and we need an adult discussion about what they are and what the inevitable trade-offs are when implementing a response to the risks posed by the virus. At the moment the HART Group really isn’t contributing helpfully to that discussion.
First person accounts of what it is like to live with autism necessarily come from people who do not have substantial learning disabilities or communication problems. They provide us with insights into autistic experiences but they unavoidably leave a sense that the picture we are forming is incomplete. This memoir by Tito, a young Indian man, helps us inch nearer the inner world of the otherwise unheard majority – he is significantly disabled and essentially non-verbal, struggles with social interaction and cannot live independently. And yet he has staggering literacy skills. He tells us of his early life and development and especially of the influence of his mother’s extraordinary dedication to ensuring he achieved everything he possibly could in life.
Tito’s writing flips between the first and third person. He describes experiences that are typical of what we know of autism – intolerance of change or of novel environments, which can provoke screaming or withdrawal; great difficulty in social interactions; learning new skills is a formidable challenge. But much of what he says I found challenging to my preconceptions. For example although Lorna Wing (who wrote the foreword to the book) comments on his self-absorption I was struck that he seems aware, at least in retrospect, of the effect he has on other people – his mother’s love and determination which comes coupled with frustration and times of distress, and also how others must see his odd behaviour.
A standard view (cliché?) about autism is that the main problem is an inability to form an understanding of the mental life of others. And yet one of Tito’s main self-reported struggles seems to be to exert control over his own actions. He cannot copy movements. Even when he knows what he wants to do he cannot initiate actions. He comments on all this without it being entirely clear how he feels about it. ”He needed to move on. He needed to write”. But then “The boy continued to flap and to remain mute”.
Tito writes poetry and tells stories. His book The Mind Tree is astounding. And he seems to take some of the playfulness of creativity into his sessions with clinicians and therapists: “He got proud of his worthless worth” and notes that “The boy was too much flattered by the remarkable impact he made on the people who wondered how he possessed such a gift”.
Tito and his mother Soma now live in the USA, and online it is easy to find some scepticism expressed about Soma’s attempts to generalise her approach with Tito to a more universally applicable therapeutic approach. It would be a shame if contention there detracted from this remarkable book – the story that Tito has to tell and the creative ability he has to show us.
The Oxford English Dictionary defines personality as “The quality, character, or fact of being a person as distinct from a thing”, a usage dating from at least the 14th century. Personhood implies some sort of persistence or continuity of character: we expect who we are to be relatively enduring, perhaps changing only in response to overwhelming “life-changing” experiences. So, if your personality is disordered, then we should expect to see the same picture – if you are a personality-disordered person then you stay one under normal circumstances.
Indeed, through much of the history of psychiatry this has been the predominant way of thinking: personality disorder, with its synonyms such as the psychopathic state, has been taken to be a long-term problem, evident in early life and persistent throughout most of adult life. Thus DSM 5 says: “The impairments in personality functioning and the individual’s personality trait expression are relatively stable across time and consistent across situations.” While ICD 11 has it that “Personality disorder is characterised by problems in functioning of aspects of the self … and/or interpersonal dysfunction … that have persisted over an extended period of time…”.
Unfortunately (for those who like the diagnosis, that is) the assumption of stability doesn’t stand up to scrutiny.
The persistence of “personality disorder” can be studied by following up and repeatedly re-assessing a group of people given the diagnosis, a so-called cohort study. Much the same sort of study involves following up people in treatment trials who have been allocated to the comparison arm rather than the active treatment arm – which typically means they don’t get an intervention likely to influence the natural course of what happens to them.
A number of studies* have now shown that people with the diagnosis of personality disorder “get better” – sometimes very quickly after diagnosis, about a half within 1-2 years, and the great majority within 10 years. This is a well-known phenomenon – in fact the ICD-11 definition of an extended period of time is only “2 years or more”.
How to explain this finding? In medical practice it is not uncommon to encounter conditions that improve, sometimes only to come back later – for example multiple sclerosis, tuberculosis, bipolar disorder. There are two views of what is going on here. The condition may not really have gone away but simply be in a dormant or non-aggressive phase (quiescence) or it may have gone away, but the disposition to get it again (perhaps genetic) has not.
The first of these explanations doesn’t work for our purposes: the diagnosis of personality disorder is a description of how somebody is living in the world, not of a bodily state that fluctuates to become be more-or-less easily observable. If the individual doesn’t meet the diagnostic criteria then they haven’t got the condition. It can’t be thought of as lying dormant somewhere any more than somebody who diets their BMI down from 35 to 28 can be thought of as having quiescent obesity.
There are several reasons why somebody might change from meeting to no longer meeting the criteria for diagnosis of personality disorder – adversities resolve, relationships improve, and that means that distress settles and it is these symptoms that now decline enough to take the individual out of the diagnostic range. By the same token a change for the worse may be provoked by a worsening of these same experiences. Seen like this, personality traits are simply names for the individual vulnerabilities or resiliencies that modify how we respond to circumstances.
So the answer to the question “How long does your personality last?” is “If your personality has been diagnosed as disordered, on average about 2 years”. If that doesn’t match your idea of what the word “personality” means, then you’re on the way to understanding why there are so many critics of a term that is widely seen as conceptually flawed as well as pejorative in its routine usage.
*One or two references…
Shea MT, Stout R, Gunderson J, Morey LC, Grilo CM, McGlashan T, Skodol AE, Dolan-Sewell R, Dyck I, Zanarini MC, Keller MB. Short-term diagnostic stability of schizotypal, borderline, avoidant, and obsessive-compulsive personality disorders. American Journal of Psychiatry. 2002 Dec 1;159(12):2036-41.
McGlashan TH, Grilo CM, Sanislow CA, Ralevski E, Morey LC, Gunderson JG, Skodol AE, Shea MT, Zanarini MC, Bender D, Stout RL. Two-year prevalence and stability of individual DSM-IV criteria for schizotypal, borderline, avoidant, and obsessive-compulsive personality disorders: toward a hybrid model of axis II disorders. American Journal of Psychiatry. 2005 May 1;162(5):883-9.
Zanarini MC, Frankenburg FR, Hennen J, Silk KR. The longitudinal course of borderline psychopathology: 6-year prospective follow-up of the phenomenology of borderline personality disorder. American Journal of Psychiatry. 2003 Feb 1;160(2):274-83.
Gunderson JG, Bender D, Sanislow C, Yen S, Rettew JB, Dolan-Sewell R, Dyck I, Morey LC, McGlashan TH, Shea MT, Skodol AE. Plausibility and possible determinants of sudden “remissions” in borderline patients. Psychiatry: Interpersonal and Biological Processes. 2003 Jun 1;66(2):111-9.
Not all psychiatrists recognize this explicitly, but there is an assumption in psychiatric practice that mental disorders are arranged in a hierarchy with those at the top being more serious than those lower down. The hierarchy has often been represented in a pyramid introduced some 50 years ago by two academics working in Edinburgh.
At the bottom of the pyramid are states of personal distress (in the original account called dysthymic states) characterised by symptoms such as anxiety, irritability, low mood and non-specific physical symptoms. In the so-called neurotic disorders the symptoms are still recognizable as part of distress, but one or more of them seems to have taken on a life of its own – out of proportion to other symptoms of distress and perhaps distorted or expressed in an unusual way. Higher up the pyramid are delusional (psychotic) states, characterised by the emergence of symptoms that are not part of mainstream experience – like holding delusional beliefs or hearing voices. At the very top are extreme states where mental life is so disrupted that a stable sense of self is difficult to find.
This arrangement represents a hierarchy in another sense, that of progressive deterioration in the organisation of mental function so that those higher up can have symptoms from any of the states lower down in the hierarchy without their diagnosis needing to change, but not vice versa.
The hierarchy is nodded at in the arrangement of the two standard diagnostic manuals – current editions DSM5 and ICD11 – in which schizophrenia and related disorders appear before severe mood disorders and then move on to the neurotic disorders.
Over time, perhaps especially in the UK, it has become common practice to talk about severe mental illness, initialised (always a bad sign) as SMI, and SMI has come to mean “any psychotic disorder”. This was never a good idea. In many branches of medicine the diagnosed disorder can be a pointer to severity but the coupling is not so strong that diagnosis can be taken as a severity statement. Some diabetes is more severe than some cancer and some COPD is more severe than some leukaemia.
So, what do we mean by severity? The answer takes us into matters that are more important to patients than the classificatory ordering of symptom states – for example impact on life expectancy, quality of life, ability to function physically (impairment or handicap) or socially (participation) come into the frame.
Is there a tension between these two ways of looking at severity? The UK government’s vaccination policy in the COVID pandemic certainly suggests some lack of clarity about what severe mental illness is and why it matters. The official order of priority for receiving the vaccine is described in a series of Priority Groups, defined by likelihood that COVID infection will be serious and could lead to death. Thus, age defines the top groups. Priority Group 6 includes adults aged 16 to 65 years in an at-risk group defined by clinical conditions one of which, in an uncomfortable change of grammar in the list, is “are severely mentally ill”. Further clarification comes in the COVID-19 Green Book Chapter 14a which defines severe mental illness as (again the weird change of grammar) “Individuals with schizophrenia or bipolar disorder, or any mental illness that causes severe functional impairment.” A recent commentary in The Lancet described the rationale as follows: “Patients with severe mental illness, which is patients with psychotic disorder, bipolar disorder, or severe depression, are at a significantly increased risk of being hospitalised or dying from COVID.”
So, the Green Book definition takes it both ways – severity as psychosis and severity as illness causing severe (not defined) functional impairment – whereas the research underlying the decision seems to refer only to the diagnosis-based definition of severity. The advantage of the latter approach is that it is logically consistent with the other priority groups, taking likelihood of hospitalisation or death as the indication for vaccination, and there are at least some plausible mechanisms for such poor outcomes. The disadvantage is that equating severe mental illness with psychosis is clearly wrong and leads to a sense of injustice among those whose illness is severe by quite reasonable more person-centred criteria. The disadvantage of the former (Green Book) approach is that while it acknowledges a wider definition of severity of illness – including, as recommended by some experts, people such as those who have eating disorders or have been given a diagnosis of personality disorder – it is no longer clear why severity thus defined puts somebody in a priority group for vaccination.
It is difficult to escape the conclusion that there is something inherently wrong with the term Severe Mental Illness (SMI). When equated with psychosis it fails to recognize that severity is not adequately captured by diagnosis. When the initials are dropped and it refers to any mental illness, it lacks specificity as a criterion for decision-making. It would be better replaced with a more accurate and specific terminology.
In the last 50 years the prison population in the USA has swollen from about 196,000 to nearly 2.5 million – a twelve-fold increase and 30 times the prison population of the UK for a population about five times the size of ours. A further 4+million are paroled or on probation.
Mass incarceration: the real American dream?
This state of affairs is not an accident or an unwished-for unintended consequence of some other aspect of US policy. It has been building for decades and is driven by a complex of inter-related social and political decisions towards action or inaction. Aggressive response to drug-related crime accounts for about 20% of incarcerations. Phenomenal levels of gun ownership increase the likelihood that minor offences like stealing from a shop or getting into a fight turn into armed robbery or (attempted) murder. Privatised incarceration and the associated prison (slave) labour are numerically small but important in lobbying and in their ideological force. Poverty is a barrier to making bail and even more so to getting a competent or interested defence attorney. Important positions in the public legal system are politicised and being tough on crime is an easy electioneering slogan (sound familiar?). Underlying the lot is a poisonous racism that has its roots in slavery and resistance to reconstruction after the Civil War.
His book Just Mercy describes some of the people he and his organisation have represented as they challenge iniquities like sentencing minors to death or to die in prison (life without parole). Winning these battles is an uphill struggle – the USA is the only country in the world to send children as young as 13 to adult prisons and it was only this month that Ohio abolished life-without-parole sentences for children; one of only 24 states to do so. The book should be read by anybody who believes that America is the Land of the Free and a model democracy.
Mental states and coercive states
The chaotic emptying of mental hospitals in the Reagan era pitched thousands of vulnerable adults onto the streets (see eg Decarceration: community treatment and the deviant, Andrew Scull, Polity Press 1984) and exposed them to risk of imprisonment that has never gone away. Stevenson touches on, but does not major on, this aspect of mass incarceration but I was nonetheless struck by a passage in his book which outlines one line used to persuade the justice system towards leniency in their treatment of juveniles. In a book where the arguments are otherwise couched in social, ethical and political terms, comes this explanation for the likelihood of young people becoming involved in crime:
“A rapid and dramatic increase in dopaminergic activity within the socioemotional system around the time of puberty…drives the young adolescent toward increased sensation-seeking and risk taking…This increase in reward-seeking preceded the structural maturation of the cognitive control system.”
Is this how abused and neglected people have to be presented to the US courts to elicit a response other than savagery?
Can Lisa Montgomery have a lasting legacy?
While I was thinking about this (I have just finished Stevenson’s book) the case of Lisa Montgomery made news in the UK. She was one of the victims of Donald Trump’s killing spree as he left office and attracted particular attention because she was female, killing women being seen as especially abhorrent in part I suspect for sentimental reasons, and partly because they are seen more often as damaged victims and less often in the role of (male) heartless psychopath.
Ms Montgomery was convicted of the most dreadful murder – killing a woman who was in advanced pregnancy and undertaking her own Caesarian section to take the baby as hers. Unsurprisingly she was recognized from the beginning to be mentally ill and indeed while awaiting execution she was imprisoned in The Federal Medical Center, Carswell which is a United States federal prison in Fort Worth, Texas for female inmates with special medical and mental health needs.
The basis for a final unsuccessful plea for stay of execution was that she was mentally incompetent, a term pretty much equivalent to lacking mental capacity in the UK. That is, she did not understand in a meaningful way that she was to be executed and why. An additional argument was that she was being denied the opportunity to prove that by being denied access to experts who might provide the necessary evidence to the court.
The relevant evidence was presented by her defence team in a petition for writ of habeas corpus. In addition to outlining a history of gross and persistent physical and sexual abuse throughout her early life, the document provides extensive neurological and psychiatric evidence, including reference to MRI and PET scanning of her brain. The various observations and opinions make a bewildering read, offering a snowstorm of diagnoses include depression, psychotic depression, bipolar disorder, psychosis, delusional cycling psychosis, PTSD, complex PTSD and dissociative disorder. All complicated by evidence of “frontal, parietal and temporal or slash limbic lobe dysfunction”, and impaired motor control, cognitive function, attention, language and cerebellar dysfunction and temporal lobe epilepsy.
It is difficult to find a straightforward account of a mental state examination that would convince a sceptical court of her incapacity. She is described at times as showing “…confused thought processes, disengagement, depersonalization, derealization, identity confusion, memory disturbance, and emotional constriction.” At times she was dishevelled and monosyllabic. At other times she reported hearing her mother saying derogatory things to her and saying that God communicated with her through dot-to-dot pictures.
Even a straightforward question about mental capacity (competence) produces a response of opinion rather than clearly stated fact:
“Based on your knowledge of Mrs. Montgomery’s history as well as the reports of counsel regarding her current symptomology, is Mrs. Montgomery able to form a rational understanding of the State’s rationale for her execution as required by Ford v. Wainwright, 477 U.S.399 (1986)?
In my professional opinion, which I hold to a reasonable degree of psychiatric certainty, Lisa Montgomery is unable to rationally understand the government’s rationale for her execution as required by Ford v. Wainwright, 477 U.S.399 (1986). Mrs. Montgomery’s grasp of reality has always been tenuous: medication and the stable, supportive environment of her confinement over the past decade have allowed her to appear psychologically intact, though her baseline perceptions of reality are always distorted due to her brain impairments and trauma history. Mrs. Montgomery’s attorney’s observations—limited though they are—indicate that Mrs. Montgomery is further disconnected from reality, precluding a “rational understanding” of “the State’s rationale for [her] execution.”
Trying to make sense of all this is complicated by the experts’ tendency to drift into quasi-neurological speculation about the origins of her symptoms:
“Traumatized children experience neurochemical, neuroendocrine and neuroanatomical changes in the brain” (Really? Experience?)
“..her neurobiological response to early stress was such a heavy load of anaesthetising, altering neurochemicals that she now just daily lives in that kind of …operating stance,…”
With regard to cerebellar dysfunction these are the symptoms one sees…distractibility, hyperactivity, impulsivity, disinhibition, not being able to control one’s anxiety, irritability, rumination,…obsessive behaviour and dysphoria”
“… the dysfunction of PTSD is that we understand now that the part of the brain that encodes memory is the hippocampus, the larger system than that but the hippocampus is the main structure. If laying down that memory as the amygdala, the part of the brain we talked about [in] the limbic system, is sending fear. So later the memory of the trauma activates the fear,…”
Piecing all this together, the most likely I could come up with was that Ms Montgomery had three main problems with her mental health, in each case exact diagnosis unclear but not relevant for the plea under consideration:-
A long-standing psychotic disorder characterised by mood swings, hallucinations and delusions;
Emotional and interpersonal problems consequent upon severe sexual, physical and emotional abuse in childhood;
Some degree of cognitive impairment consequent upon brain injury sustained during attacks in childhood;
All these almost certainly exacerbated by the abusive nature of her treatment during incarceration.
In truth the only conclusion I could come to in the end was a feeling of despair that her liufe depended upon a procedural argument about whether she understood that the state wanted to kill her.
Lessons for the UK?
Like so much about life in the USA, especially in the Trump era one can be horrified by the inhumanity of it all, but it is difficult to see if there are any messages of relevance to our own policy and practice. I think there are at least four lessons, two relating to public policy and two relating to psychiatric practice especially as it is used to explain and respond to social deviance.
First and foremost, we must step back from the current drift towards demonising the poor and marginalised and especially those from minority ethnic groups. The main cause of mass incarceration is illiberal social policy, not individual badness – let’s not go there.
Second, we should avoid imprisonment if at all possible – including imprisonment of those with significant mental illness, those charged with offences but not convicted, and sans papiers suspected of not having legal status as immigrants or asylum-seekers. Privatised prison services are wrong even at a pragmatic level because profiteers are a distorting influence on public policy.
In relation to psychiatric practice we must be endlessly careful that our formulations do not support such demonising by emphasising individual pathology at the expense of social determinants – the diagnosis of personality disorder being a prime example.
Functional imaging is an interesting development in understanding the brain, but it can’t help us with questions about agency and responsibility. Muddling together neurological and psychological explanations runs the risk of neither being delivered adequately. Brain investigation doesn’t make psychological explanation in such cases more credible, it just muddies the waters.
It is difficult to believe any of this made a difference to poor Ms Montgomery’s fate – a spiteful punitive system was determined to have its way – but perhaps we can make the best of a very bad job by asking how her final sorry end might have been avoided.
Like most people, I suspect, I have had a hazy idea of human trafficking as something to do with women from Eastern Europe being forced into sex work and men being trapped into low-waged agricultural or other jobs. Occasionally stories surface about vulnerable individuals trapped in dire conditions by unscrupulous families, and most recently about the fate of 39 trafficked Vietnamese who died in transit. Prompted by the Many Stories Matter book group in my university, I decided to find out more and have been educating myself as a starter with two books on the subject.
Modern Slavery: A beginner’s guide. Kevin Bales; Zoe Trodd; Alex Kent Williamson. Oneworld Publications 2011
Bales, Trodd and Williamson are academics with long-standing interests in slavery and commitment to its abolition. All three are now based at the University of Nottingham in England. Not surprisingly, their book is a model in presenting the global facts about trafficking and slavery (a distinction helpfully clarified early on) and their diversity in the modern world. The book has something of a US bias because of the origins of the authors, but really doesn’t suffer for that.
Some of the book’s messages are predictable ones: risky environments are made by poverty and the social disruption caused by globalised destruction of rural life and the drift to slum dwelling. Displacement through environmental degradation and war are major contributors. At an individual level exploitation of groups is defined by ethnicity, caste (in India), religion and especially gender. The highest prevalence of slavery in the world turns out to be in India, in the form of coercive/indentured labour and domestic servitude linked to the caste system.
A less familiar finding is the importance of corruption at national government level in tolerating or even actively supporting slavery and trafficking. Sometimes this amounts to active pursuit of policies that enslave – in Burma and China for example. And although poverty makes a ready source of people to prey on, it is affluence that creates a market for trafficked people. It is rich, illiberal and corrupt countries like Japan and Israel that top the lists as recipients of those trafficked for labour or sexual exploitation.
Unlike many books on problems in the modern world, the book ends with an outline of the practical steps that can be taken to tackle slavery – starting with proper data collection and sharing, international and national anti-slavery plans should include education programmes, active law enforcement and funded rehabilitation schemes for survivors. Industry must be held to account – and especially in an interconnected global world industry must look to its own supply chains and ensure they are not supported by slavery (recent revelations about the rag trade in Leicester came to mind while reading this). A corollary of the global scope of the book is that pointers for individual action are a bit less incisive – being alert to spotting victims, raising awareness, pressing businesses on their practices.
This is where my second book comes in – I was looking for something to help me understand more what was going on in my own country, and to think about what I might do about it.
Stolen Lives: Human Trafficking and Slavery in Britain Today. Louise Hulland Sandstone Press 2020
The blurb on her publisher’s page says Louise Hulland has been investigating the plight of victims of modern slavery and human trafficking since 2010, whereas in the book itself Hulland says she started researching for the book when Theresa May was PM, in other words in 2016, and in her final summing-up chapter she says she has spent “six months immersed in the world of ant-trafficking and slavery, speaking to those on the front line…” . In truth that’s how the book reads – as a breathless whistle-stop tour of key informants with little or no deep reading or analytic work behind it. There is to take one example no discussion of the implications of so many faith-based organisations being involved in anti-slavery and anti-trafficking activities.
The tone of the book owes as much to lifestyle writing as it does to research rigour. The presentation consists essentially in a series of interviews apparently transcribed verbatim and introduced by odd personal vignettes. Kathy Betteridge, the Salvation Army’s Director of Anti-Trafficking and Modern Slavery, is petite with short blonde-grey hair and is hugely passionate. Norree Webb, the Army’s First Response co-ordinator, is by contrast warm, calm and seemingly unflappable. Rachel Harper, manager of Helpline is warm and engaging. Andrew Wallis, CEO of Helpline, is tall friendly but intimidatingly intelligent. Caroline Haughey, a barrister with a special interest, is tiny and wears a bright pink jumper; she is warm and incredibly modest. Colin Ward, a DC with Greater Manchester Police’s Modern Slavery Coordination Unit, is tall without being intimidating, calm with a warm northern accent. Apparently he’d clearly seen more than any human would wish to.
Once you get past this stuff there is a reasonable amount (although not 270 pages’ worth) of information about how slavery and trafficking are approached in the UK. Most of it is available without the padding from the Global Slave Index 2018 report on the UK. The Modern Slavery Act 2015 tidied up a messy legal framework and makes prosecution cases easier to pursue, and a National Referral Mechanism provides a framework for identifying victims of modern slavery and ensuring they receive support, but there are formidable barriers to tackling the problem at scale – not least underfunding. Not many people know, I suspect, that the main recipient of Government funding to support victims is the Salvation Army, which in turn contracts work to several partners including other faith-based organisations. The picture that emerges is of groups of dedicated individuals working for statutory bodies and in the third sector, struggling to do the best they can in the face of official indifference and hostility. The hostility comes mainly from racism and from the fact that so many victims are either immigrants without the right papers, or UK nationals who need extensive help from our (much diminished) welfare state.
What can an individual do?
As a former health professional, I thought the best place to start would be in the area of health of victims of trafficking and slavery which is, not surprisingly, terrible. Poor nutrition, physical abuse, sexual abuse, unhygienic living arrangements and inadequate access to primary healthcare contribute to poor physical health. Poor mental health comes from the burden of abuse and neglect that constitutes the defining condition of the people involved, and may be compounded by pre-existing problems that increased initial vulnerability to exploitation.
To get a flavour, I started by sampling the websites of four hospital Trusts (two acute, two mental health) and two large CCGs. None had a link to a modern slavery statement on its home page and for 5/6 a search on their website using <slavery> or <human trafficking> produced no hits. One acute Trust had a statement about its compliance with the Modern Slavery Act’s requirement for transparency in supply chains. One of the CCGs mentioned that its safeguarding teams were helping local NHS staff to recognize and respond to people who were at risk or had been trafficked or enslaved. One Trust’s maternity service had a nice page about maternity care for refugees and asylum seekers, but none of the sites indicated specific services, or even specific individuals to contact, in relation to slavery or human trafficking. I couldn’t find anything relevant in a search of the RCPsych website.
Part of the problem here is one of scale. The Global Slavery Index (an excellent site well worth a visit) estimates that there are 136,000 people in modern slavery in the UK, about 2/1000 of the population. If we assume that half are in or around London, my back-of-an-envelope calculation puts anything from 500 to1000 in Leeds where I live, or about 1/10 of 1% of the population. Every one of those people needs help but put against the scale of problems being dealt with routinely by our under-resourced health and social services it is easy to see why slavery doesn’t get top billing. At the same time, it is unclear what exactly is the need of services and whether it is specific or can be subsumed within other services designed to support the traumatised and exploited. There are barriers to presentation, personal and imposed by circumstances, which add to difficulties in planning a ground-up response.
Regardless, what makes work in slavery and trafficking different is the involvement of organised crime and the concomitant need for liaison with other agencies, good record-keeping and reporting. There is nothing about the current UK government that inspires confidence in the likelihood of effective action. Perhaps a small step in the right direction would be for all Trusts to identify a liaison clinician with responsibility for advising about and overseeing services and liaison with relevant statutory and 3rd sector organisations, as has been recommended to improve healthcare for people with a learning disability.
I was struck by this week’s variously-reported claim from Adrian James, the current president of RCPsych, that the pandemic is “the biggest hit to mental health since World War 2” (Mail Online) or “poses the greatest threat to mental health since second world war” (Guardian). My initial response was heartsink – yet more melodrama with yet another wartime analogy, especially something I could do without as plucky Britain goes it alone again as we leave the EU. But then I got thinking – where would you look for comparator epochs if you wanted to take this claim at face value? Two candidates come to mind; each covers 5 years.
First up, the post-war years 1947-1951. Winter 1946/47 was one of the worst winters on record, exacerbated by a fuel shortage for which the Labour Govt (personified in Manny Shinwell) was blamed, at least by the press. Industrial output is estimated to have fallen by 10% in the following year. The Labour Party held on at the 1950 general election but lost the snap election called the next year. In that year, 1951, there was a major influenza epidemic which is estimated to have increased all-cause mortality in those over 65 years by about 50% and causing the greatest number of excess winter deaths in any year in the second half of the twentieth century. Peak death rates in Liverpool were higher than during the Spanish flu epidemic of 1918.
My runner up is the years 1980-84. Thatcherism had a grip and there was social unrest with riots in 1981 in Brixton and Toxteth. On the economic front unemployment ran at 2.5-3 million (more than 10% of the working age population) and the hugely disruptive and divisive miners’ strike dominated 1984.
Set against these threats we have to ask about resilience in the population. The post-war years saw continued rationing and poor housing and poor physical health at levels we go nowhere near approaching. The NHS was founded but will have had little impact on mental health provision. It is difficult to know what to make of any sense of national unity and social solidarity at this time; much is made of growing disillusion with Attlee’s government but in 1951 they still gained more of the popular vote than did Churchill. They lost to our electoral system. Society in the 1980s was more affluent and physically healthier and the NHS had grown hugely, but it was undoubtedly troubled. Thatcher was a divisive leader of a divisive government, notwithstanding populist moves like selling off our social housing and privatising services in support of the idea of a laughably-named share-owning democracy.
So, there are elements of our current predicament in these previous epochs. How could we judge each in terms of their mental health impact? I find this pretty much impossible to say and we don’t get a clue from the press coverage. As with all NHS bed numbers, psychiatric bed numbers have fallen dramatically from about 155,000 (1953/54) to 67,000 (1987/88) and 18,000 (2019/20) so numbers of admissions won’t help. The Mental Health Acts of 1959 and 1983 will have dramatically changed practice and patterns of service delivery. The only robust measure of population mental health – the suicide rate – has fallen pretty steadily over the decades, with the most consistent evidence for deterioration coming at times of economic recession and mass unemployment.
It would be interesting to see a thoughtful analysis of these questions about the nature of major social upheavals and their consequences for mental health, but if it’s going on it’s not making it into the public domain. A note from March 2020 states that SPI-B received input from academic specialists in history; that committee’s terms of reference for October 2020 do not mention historians as one of the academics from whom advice is being sought. What a pity.