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.
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.
One dismaying feature of our public debate about responses to the pandemic is the way that some high-profile academics and clinicians have chosen to make their contributions. That is, there’s a big problem not with what they have to say, but how they are saying it. I recognize at least three undesirable communication styles:
Lancet editor Richard Horton has made no bones about his opinions – he describes the UK’s response as “‘the greatest science policy failure of a generation’. But whatever his views, did he need to describe the SAGE committee as “The public relations wing of a government that has failed its people”? Many of the academics on that committee and its working groups are doing the best they can in a fast-moving and unfamiliar world, where they are dealing with a near-impossible set of politicians and their advisers. Under the circumstances the remark by Robin McKie, the reporter sent to cover the puff of Horton’s book about COVID that “Horton can sound strident, even arrogant” seems a little understated.
Horton’s abrasiveness is as nothing compared with Carl Heneghan’s, Professor of Evidence Based Medicine in Oxford, who has said that the government’s scientific advisers “specialise in causing panic and little else”. Insulting people who disagree with you is no way to conduct a debate about research and its interpretation.
Independent SAGE is a minor variant of this adversarialism –it’s not their message I’m bothered about, it’s the mode of its delivery, where the mechanism is not simply to propose different ideas but to establish a forum defined as oppositional.
Melodrama and shroud waving
The current President of the Royal College of Psychiatrists and his predecessor have both used the word tsunami to describe apparent increases in mental health problems during the pandemic. Metaphors are tricky ambiguous things – what is this one supposed to mean? That what’s happening is a highly visible, immediately destructive result of a force of nature? That people with mental health problems represent a threat we should run away from as fast as possible? Actually, it doesn’t seem to mean much more than – there’s a lot of it about and we ought to be planning a response.
I’d much rather hear exactly what the problem is, how we know, and exactly what the proposed solution is. By which I don’t mean statements like Professor Neil Ferguson’s flamboyant claim that 20,000 people died because we started the first lockdown a week late. Exact perhaps, with an implicit message about a proposed solution – do what I tell you next time – but rather short on the robustness of the “how we know” element (see later in this piece).
Writing in the journal Lancet Psychiatry in November this year. Psychologist Professor Ellen Townsend says: “…UK residents have all been punished by new limits to the number of people socialising together, and have been warned that further restrictions could be imposed unless their supposedly reckless social behaviour improves.” Social media have more of this sort of thing – mandated mask-wearing as an abuse of human rights for example. The rhetoric conflates two ideas – it is perfectly possible for something to be punishing (such as a physical training regime or schedule of book signing events) without it being administered as a punishment.
Being economical with the truth.
Since its use by cabinet secretary Robert Armstrong during the Spycatcher hearings “economical with the truth” has been taken to mean “lying” whereas its wider meaning is (as the words suggest) something like – “being strategic about the degree to which truths are revealed.”
REACT-1 is a major study in the UK’s epidemiology of the COVID, and especially during the early months the media pounced on its interim results, presented by Neil Ferguson (again). A fine example was the splash a couple of months ago that across the UK R=1.7, with important implications for numbers of cases that might be expected. The withheld truth here is that REACT-1 is one study of one sample, results modelled by one group, and results should be treated with caution until a better estimate can be obtained by pooling or at least comparing results from all available studies. A non-trivial suggestion, given that – certainly at this time – the estimates from REACT-1 modelling were considerably in excess of those from other groups, as revealed during the press conference which presaged the rationale for our second national lockdown.
Writing in the Spectator Carl Heneghan (again) and a colleague presented the results of a Danish trial evaluating the effect of wearing face masks on the likelihood of the wearer contracting a C-19 infection. The original title “Landmark Danish study shows face masks have no significant effect” proved too much for the journal to defend so it became “Landmark Danish study finds no significant effect for face mask wearers.” The article noted that since the study was an RCT it represented “highest quality scientific evidence” but failed (oddly) to mention that the medical journal in which it was published carried an accompanying editorial explaining why they had accepted a paper describing a study with so many flaws. The study’s estimate of effect was so uncertain that the authors noted that they couldn’t rule out a significant effect on mask wearers infection rates – also not mentioned in the Spectator article. And of course the Danish researchers didn’t look at rates of transmission from mask wearers to others. It’s only by leaving out all these facts that the Spectator article can conclude: “And now that we have properly rigorous scientific research we can rely on, the evidence shows that wearing masks in the community does not significantly reduce the rates of infection.”
Does any of this matter?
Some of this has been noted before. For example, writing in The Conversation on 6 October Danny Dorling deprecated the polarised approach to the specific question of lockdown policy. But does it really matter? Is the style of communication noted here just what’s necessary to get debate about science into a media that is largely scientifically-illiterate?
Public communication about the implications of the COVID-19 pandemic has not been good. The government has led the way with inconsistent messages, untrusted presentation of results aimed at boosting their image rather than telling the truth, and a prime minister whose incoherence and vagueness has ceased (if it ever was) to be amusing. In that context this academic behaviour could be seen as doing no more than adding a little to our woes – making it that much harder to guide the public response to risk.
Unfortunately it goes further than that, as misrepresented science is picked up by those lobbying for a particular viewpoint. It suits the libertarian perspective to present modellers as hopeless, biased academics who present misleading findings to politicians and use them to press for draconian interventions – a pitch that is easier to make when bolstered by hints that perhaps over-confident prediction and error-proneness go together.
In the longer-term the damage comes from a dogmatic and attention-seeking style that misrepresents science – when natural uncertainty and healthy debate are portrayed as incompetence and division, there will inevitably be a loss of public confidence in the role of science in policy making.
Much has been made of the re-set in Government that is likely to follow the departure of the poisonous Dominic Cummings. Surely now is the time to re-set the tone of the scientific debate – there are enough thoughtful, articulate academics out there. We need to be pressing for a change in tone by challenging unhelpful communication – not for what is being said but for how. And a research idea: behavioural science hasn’t contributed much to thinking about how we should respond in the pandemic – perhaps research is needed into the impact on behaviour of declining interest in listening to over-confident and over-definite experts, what we might call rhetoric fatigue.
Is covid-19 really a justification for more funding for behavioural science?
Behavioural science (essentially health psychology) came to applied health research with a big promise – that the application of psychological theory would lead to effective interventions for changing important health-related behaviours. In its strongest form the claim was that it was only such theory-based interventions that could be effective.
This promise was taken up enthusiastically by the UK’s main research funders, the MRC and NIHR, so that in recent years it has become a default expectation that all interventions aimed at changing any aspect of the behaviour of patients or populations should be informed by behavioural science. Their committees started to include behavioural scientists along with statisticians and economists – experts whose knowledge was required to make a decision regardless of the specific topic being considered for funding.
There have always been straws in the wind that this idea might have been a tad oversold. Initially it was individual evaluations of theory-based interventions that failed to deliver as expected. A discussion paper in 2013 found no evidence that the approach had generated cost-effective interventions for common behaviour-related health problems like obesity and smoking. And then a major review of the evidence for the so-called theory-effectiveness hypothesis, published in 2019 in the British Journal of Health Psychology, concluded “Theory-based interventions as currently operationalized in systematic reviews were not found to be more effective than non-theory-based-interventions.”
Still, the idea has taken root. As everybody knows, even that great thinker the former Prime Minister David Cameron was convinced. So when the COVID-19 pandemic arrived it was no surprise that one of the SAGE subcommittees, SPI-B, was charged with applying behavioural science to the problems posed by a need for widespread adoption of changes in lifestyle and day-to-day activities. What has come as a surprise is how little we hear about that committee compared with, for example, SPI-M the committee which is concerned with measuring and modelling the progress of the pandemic. A March statement about the role of behavioural science in the coronavirus outbreak consisted mainly of platitudes and an appeal for urgent research, and since then we have heard hardly anything.
In the past week that relative silence has been broken twice. First has been a vehement denial that the idea of behavioural fatigue comes in any way from the behavioural science stable – an intriguing entry into public debate coming just as it’s clear that whole sections of the public are no longer taking any notice of pleas to maintain social distancing or wear face masks.
Second, an article has appeared in this week’s British Medical Journal with the rather belated acknowledgement that “there is almost no relevant evidence on how to promote adherence to behaviours such as distancing from other people and households, hand cleansing, effective use of face coverings, and avoiding touching one’s eyes nose or mouth with contaminated hands.” They might have added “or willingness to collaborate with contact tracing agencies”.
Why has behavioural science ended up in this position? Michie and West suggest that it’s because they haven’t had enough research funding. More to the point are two features inherent to the whole enterprise. Modern health psychology has taken a robustly individualistic approach – privileging psychological characteristics (such as self-efficacy) and psychological processes (such as the forming of action intentions) to the neglect of interpersonal, social and cultural influences on behaviour. And in its incarnation in health, behavioural science has privileged theory as the foundation of its claims to truth, neglecting the sorts of research approaches that would test those theories in real world settings.
Where next? “…we urgently need a major coordinated programme of research to develop and evaluate behavioural, environmental, social and systems interventions that will be effective and viable in tackling the covid-19 and future pandemics.” Well maybe, but it isn’t at all clear, given the history, that “behavioural” should be at the front of that list – except that it makes the acronym snappier. There are other ways to think about the rationale for population-level interventions and we should be conducting a wider search for answers – for example through the social and political sciences and humanities. And adding “political” to the list of interventions would help: any applied health researcher will vouch for the ineffectiveness of the cleverest interventions if they aren’t implemented competently, consistently and comprehensively.
There’s plenty of time to consider the options here. The UK’s pandemic response is in the hands of a government that is influenced by many factors, and high on its list of priorities is not attention to the complexities of science as it applies to population health behaviours. I’m sure they won’t be pressing for answers before Christmas, although they might be looking for people to blame when it’s clear they don’t have those answers…
Another NHS review is trailed in our newspapers – this one apparently aimed at clipping the wings of NHS England and Public Health England. Anyone who knows the first thing about British politics will know that neither Boris Johnson nor Matt Hancock has the ability or the interest to lead a strategic overhaul of our health service, so no doubt the output will be determined to a large extent by the prime minister’s Svengali, Dominic Cummings. What does that tell us about the likely consequences for mental health care in this country?
Cummings likes to pose as an outsider but his scruffy T shirt and stubble is as much an affectation as his employer’s tousled hair and faux-Churchillian gestures. He is a mainstream Tory – privately educated, Oxbridge humanities degree, socially and politically connected. His interest in IT and modelling is a quirk; his real drivers are authoritarianism and disdain for Little People – justified to himself by his self-appraisal as the cleverest man he knows. Cumming’s foot soldiers are the SPADS he employs to run the prime minister’s (and Number 11’s) office. What he seems to be creating sounds a long way from the team of talented weirdos and misfits he famously advertised for and more like just another insiders’ clique.
Cumming’s place man as Number 10’s adviser on Health & Social Care, Life Sciences and Technology is one William Warr, who fits the bill nicely. A standard issue arrogant white man, he has no claim to expertise in health and social care apart from entry-level training in public health and failing to complete his PhD, but he has connections and holds the right political opinions. And those opinions, outlined in (of course) The Daily Telegraph, don’t bode well for our health services – antipathy to an NHS that wastes all its resources treating ill people, overvaluation of the role of tech, tired ideas about smartphone apps and nudge interventions, unthought-through ideas about personalised medicine based upon genetic testing. And Warr seems to have skipped the modules in his MPhil on social determinants of health and on secondary and tertiary prevention.
I’m wondering what all this has to offer people struggling with long-term mental illness, or with the unglamorous admixture of physical and mental disability, poverty and educational under-achievement described so well in Frances Ryan’s book Crippled. The answer is, I’m afraid, nothing. The ability to exercise informed choice about lifestyle is not to be dismissed, but it is overprivileged by those who don’t like the idea of a welfare state. A Zoom chat with a mental health support worker and an offer of gene sequencing is no substitute for good housing, education, a safe environment, proper treatment from a multidisciplinary team of specialists, and a society that values support and participation over competition and acquisition.
Another missed opportunity in the Molly Russell case
are two views of how people with mental health problems experience social media.
In one view they are places where you wander alone, drawn into an immersive atmosphere
of depressive messages and images – self-harm and enticement to suicide
everywhere you look. In the other they offer a space where you can come out of
hiding, share otherwise secret fears with peers, gain an element of support and
In the former view, risk of suicide is increased by the mood lowering effect of the content and by a sort of creeping familiarity with the idea of self-harm or suicide – called sometimes desensitisation or normalisation – and greater awareness of the methods involved. In the latter view the social or networking function creates opportunity for reducing the sense of disconnection or lack of belonging, and the sharing of detail allows some alleviation of the burdensomeness of feeling uniquely troubled 1.
The Janus-faced nature of social media is outlined in a report by Barnardo’s about young people, social media and mental health – Left to Their Own Devices. The natural conclusion is that different people are likely to be affected differently by their online experiences, and the same person may be affected differently on different occasions. Which raises the question – how to minimise risk without at the same time suppressing useful content? It’s a tricky question and one that requires (you might hope) a careful public debate involving as many interested parties as possible in coming to a solution that considers all the competing demands of the situation.
In the UK, a fair bit of this public debate has centred recently around the suicide of teenager Molly Russell, not least because her father has pressed forcibly the case for the damaging effect of social media and the need to suppress content that might (in his view definitely does) encourage suicide.
Once the case surfaced, the early signs were not encouraging for those of us looking for a wide-ranging and informed discussion. The BBC opened their coverage with an oafish interview of Steve Hatch, the MD for Facebook in Europe, by the BBC’s Media Editor Amol Rajan who, as far as I am aware, knows nothing about self-harm or suicide.
After some grandstanding political outrage by the likes of health secretary Matt Hancock the government produced a White Paper – Online Harms – that bundled encouraging self-harm or suicide with incitement to terrorist activities, dissemination of child pornography, and drug dealing in the dark web. The main direction hasn’t therefore been about self-harm and suicide prevention at all, it’s been about steps to regulate the tech giants.
The response from the principal player in this case – Facebook/Instagram – has been as dispiriting as one might expect. After a laughable attempt to use Nick Clegg as a front man to reassure us of their good intentions, they announced earlier this year a ban on images of self-harm described as graphic or explicit – with no definition of either offered by way of clarification. Now Instagram has announced a ban on drawings or cartoons. There’s again lack of clarity about exactly what this means; in the linked article the specific example is of text linked to an innocuous drawing.
is the commission-like meeting of organisations, clinicians, academics, people
with personal experience, that should be leading the debate and informing the
decisions? The social media companies don’t want it – they want to manage the
debate and avoid swingeing statutory regulation. The government doesn’t seem want it – they’ve
had long enough to organise it if they did. The mainstream media don’t want it –
they just want a story to tell, sentimental or sensational if possible. Samaritans
has an interest but it’s a slow train coming.
are the professional bodies in all this – my own Royal College of
Psychiatrists, the British Psychological Society, the Royal College of Nursing,
the Health and Care Professions Council? I don’t mean where are they in
offering uncontentious opinions, I mean where are they in organising the high
profile, mature debate that’s needed to replace what’s going on now? They are nowhere, and that failure of
leadership is what represents the real missed opportunity.
other ideas about risk of suicide are covered in Thomas Joiner’s book Why People
Die by Suicide (Harvard UP 2005)
Cricketer Geoffrey Boycott has been in the news
recently, following the award of a knighthood in outgoing Prime Minister Theresa
May’s honours list. The coverage has not been celebratory, with criticism of
the decision focusing on Boycott’s conviction in a French court for beating up
his then partner in 1998.
It’s a shabby affair, and I followed it up mainly because I wanted to understand more of the French investigatory (rather than adversarial) approach to testing evidence – described disinterestedly by Boycott as being assumed guilty unless you can prove yourself innocent. In the middle of the contemporaneous coverage of the original verdict in the Independent newspaper I came across this striking paragraph about an aspect of the case I hadn’t previously seen reported:
The judge, Dominique Haumant-Daumas,
indulged Boycott and his lawyer when they presented hours of muddled evidence
from, among others, a psychiatrist who had never met the victim, Margaret
Moore, 46. (He judged her, from television clips and conversations with a
former husband, to be a “hysterical psychopath”.)
The case was dug up again by The
Telegraph newspaper in 2015, with the assertion that “Geoffrey Boycott ‘must
be knighted’ after new evidence points to his innocence over domestic abuse
case.” The paper was more expansive about the nature of the psychiatric
Dr Peter Wood, a consultant forensic
psychiatrist who was consulted by Boycott’s legal team, concluded that Miss
Moore: “Has a diagnosable psychiatric disorder in the form of a personality
disorder with hysterical and psychopathic features. It is likely that there is
an additional factor, namely chronic excessive intake of alcohol, probably
alcoholism…there is clear evidence of her lying on a repeated basis. She is
probably a pathological liar.”
I have no idea if Theresa May thinks Boycott is
innocent – after all it was only a French court in which he was tried – or whether
she accepts the verdict but thinks it’s irrelevant to the award of a national
honour. I don’t know anything about the psychiatric report(s) seen by the
court, beyond what is quoted in the national press. What I do know is that this
way of describing somebody’s personality as a mental disorder offers an
uncomfortable illustration of one reason why so many people find psychiatric practice
objectionable. The roots of the
diagnosis of personality disorder are in pejorative and misogynist labelling
and no amount of “destigmatising” can change that. It’s time we dropped the whole
idea – neither medicine nor the law would be any the poorer if we did so.
Professor June Andrews discusses her discomfort about advocacy based upon the questionable (but unquestioned) personal experience of individuals.
Dementia is in the news.
Stories about it could be described as fashionable. Advocacy organisations understand the power
of hearing the voice of a person who is experiencing dementia themselves, and
so they are on the hunt for people, preferably famous, who can come to
represent the disease. They can be
people with dementia, or the relatives of people with dementia. At a push, they can be people who sympathise
with dementia, if they are famous enough to be influential even though they
don’t have a back story.
Advocates have an honourable role in the campaign of any
charity to raise funds. It’s often
described as raising awareness. But in
truth, awareness is already pretty high so you can be sure the main aim is to
get funding for the charity, which is often focussed on a cure.
There are two problems with this sort of representative
Problem 1 – the unquestionable legitimacy of “personal
The press officer at the charity is not a clinician, so when
someone turns up with a diagnosis, they take it on face value. The way news is
curated by media editors and controllers demands tropes like “victim” or “hero”
and some virtue signalling or novelty. If
the person with the diagnosis is articulate and personable, they will be good
to undertake media roles for the charity. The public gets most of their
information from general media, so that’s the way to let them know they need to
fund a particular charity and secure a cure.
Media coverage is so relentless and fast, the representative needs to be
nimble and well prepared to get the best from any opportunity that arises.
Dementia is a progressive degenerative condition, but the
press officer can’t stop to ask any questions when the person is still stable,
at the same level, years later. By that
time the dementia representative patient is busy and in demand for appearances world-wide. So pervasive is the idea of “nothing about me
without me” that conference organisers know they will be heavily criticised if
they fail to put a person with dementia up on the platform. The media-experienced-dementia-experienced
personalities get heavily worked. They
see it as a duty and a mission, whatever it costs them.
I have recently been alerted to the fact that any question
of whether they actually have what a clinician would think of as dementia is blocked. Dementia clinical experts are puzzled,
because mild dementia is a transitional phase but these mildly affected media
representatives go on for years. If
someone has been on the circuit for a long time, clinicians can with confidence
say that this person is definitely not like any other dementia case. The charity can’t afford to go anywhere near
this. However odd it might seem to people who really know about dementia, the
representative (who almost certainly has some other complex illness) is put up
in public as just “a person with dementia”. News values demand an interesting
person with dementia who is happy to be exposed in the media. If you have one, you keep them as long as
possible and are, to be honest, grateful
if they seem to survive longer than usual because it’s hard work to keep
finding people with a fatal, progressive, cognitive disease and a thirst for
publicity. You invest in what you’ve got.
Any suggestion that the patient’s sense of entitlement is
out of control is taboo. When organising dementia events, you may sympathise
with requests for free places for people with dementia. When they then expected travel and hotel
accommodation for themselves and their partners, with a few days on either side
to overcome their fatigue, organisers can’t always afford it. My own
experience is that refusal causes profound offence, and can give rise to well
publicised anger and unfavourable comparisons with other conference organisers.
We’d get accused of profiteering on the backs of people with dementia and
failing to give voice to people with dementia.
Actually our job was not to give them voice. It was to educate professionals about the
latest research, and practical things like how to manage continence, and terminal
care. The person with dementia talking at the event
was usually preaching to the converted. We had more educative value from
dramatic representations of the sort of complex problems that could never be
revealed in the first person account of one individual.
Problem 2 – erosion of the legitimacy of professional
The second problem is related. In the environment that has
been developed with the strong encouragement of the advocacy organisations, any
one of these “dementia-experienced” selected representatives trumps the
knowledge or experience of the rest of the world. The individual is sanctified with an almost
religious fervour, in that anything they say cannot be contradicted. Crossing
them gives rise to shock and outrage. Those
who might be seen to hold heretical positions such as questioning the diagnosis
or wanting to meet without a token dementia person in the room often do so
secretly because to speak openly about this sort of thing can affect your
funding or your job prospects. You risk
a sort of excommunication. Or you hide.
When you’ve upset the
dementia lobby, they mobilise an articulate person with dementia who goes along
with their mainstream view to attack you. From experience, it is personal and vicious. If I was earlier in my career, I believe I’d
be silenced by them. The decider is that
I don’t have dementia and they do, so anything I say that they disagree with is
evidence that I have no knowledge. In this way, people who have worked with
hundreds of affected families and people are marginalised. One individual can
say on the basis of their personal experience, with the backing of an
organisation, that this is only a “so-called” expert. Social media heats up. It’s dangerous to come out with an alternate
point of view because you’ll get attacked.
I understand fear and rage, and as a psychiatric nurse, I’ve
worked with lots of that. What offends
me is the channelling of that by organisations and lobbies for their own ends,
using people with dementia, patients, dementia sufferers – whatever you are
allowed to call them – as a human shield. They like to imagine they have the
moral high ground, but they don’t. For
them, it’s just business and the sooner we reveal that, the sooner other sorts
of experts will be able to say what they know without needless anxiety.
An intriguing recent study was done no favours by melodramatic misreporting of its findings.
Substitutes or proxies for self-harm include doing painful but non-damaging things like holding on to ice cubes or eating hot peppers. They are quite commonly cited in advice about self-harm. For example, when I put <How can I stop self-harm?> into a search engine recently, using substitutes came up in the advice offered by my own Royal College, by a private healthcare chain and by a 3rd sector organisation. There’s actually very little evidence behind this advice, so it was good to see a recent study exploring the experiences of young people with such approaches.
The study had two parts: an online questionnaire to which
758 people replied, and an interview with 45 people. What were the main findings?
Only 7/758 people who completed the questionnaire said they had used any of the
techniques; it isn’t known why the other 99% hadn’t. In the interviews, 29
people said they’d used at least one of the techniques – some found they didn’t
help at all, some found they did.
This sort of small numbers qualitative study can’t tell us how common certain experiences are, only what the nature of such experiences might be. So the Sky News opener “Many of the techniques used to reduce self-harm do not work for most people…” could only be accurate if the sentence had finished “…because most people don’t use them”. Unfortunately that wasn’t the message being conveyed.
There’s a further twist.
In the questionnaire study 18 people, and in the interview study at
least 6 people, said they had used one of the techniques (snapping an elastic
band against the skin) as a means to self-harm. Now, given that one sort of
harm reduction involves “strategies that aim to ensure that the same method of
self-harm [AOH: in this case damaging the skin] has less medically
severe consequences” this might be less of a bad thing than it sounds – elastic
bands do less harm than broken glass or razor blades. The news report (of course) took the opposite
tack “The therapies could even become abusive in their own right”.
My experience is that most mental health professionals are
rather sceptical about proxy or harm minimisation approaches, thinking that if
they do help some people then any effect is likely to be fairly weak or
transient given that they don’t tackle underlying problems. They might provide
a bit of breathing space but they can’t substitute for therapy. I don’t think
most will mind very much that such techniques get a poor press through this
report, although we could do with some more discussion about what part they
might play in selected situations. However, what they should mind is yet
another example of mental health reporting being slanted by poor understanding
of science and a need for dramatic headlines.
Here’s a typical news story from a local paper – about a police call that led to a house search prompted by smelling cannabis.
“The search of the property unearthed two dozen plants being
cultivated with a hydroponic system in a cupboard and two more in a nearby
wardrobe, said Mr David Swinnerton, prosecuting. Police estimated the crop had
a potential yield of over £7,000.
However it was claimed at court that […] might have been pressured
into growing the drugs. Mr Thomas Griffiths, defending, said unemployed […] who
had several previous convictions and had recently become a father, suffered
from a personality disorder and might have been exploited by others because of
What does it mean to say that a defendant in a case like this has
a personality disorder? Here’s the
answer from the NHS
“A person with a personality disorder thinks,
feels, behaves or relates to others very differently from the average person. There are several different types of
personality disorder. This page gives some information about personality
disorders in general, linking to other sources for more detail.”
In other words, personality disorder is a diagnostic label attached to who you are. To my mind this is psychiatry’s worst idea – the use of diagnostic labels to describe somebody’s personality.
“There are real problems with this way of thinking. First, and rather obviously, it leads to an emphasis on the individual as the source of their problems and therefore downplays the role of other people and circumstances…
…Second, the diagnosis is often experienced as a way of saying ‘the problem is about who you are as a person’ and it is widely used in a critical or dismissive way by professionals in health and social care. The person on the receiving end can easily be stigmatised and become (rightly) angry – that anger then being used as further evidence of what’s wrong with them. Not surprisingly, lots of people given this diagnosis don’t like it and don’t like the effect it has on the way others treat them.
isn’t to say that people don’t have recognisable and enduring characteristics.
We all know somebody who is particularly obsessional, prickly, paranoid or
prone to emotional outbursts. Sometimes these characteristics do indeed seem important
in explaining self-harm. For example, impulsivity is a tendency to act on the
spur of the moment, without much thought and without consideration of the
consequences. This characteristic is quite commonly associated with self-harm,
especially when it is coupled with negative ways of thinking.
isn’t right is elevating these observations into diagnostic statements –
putting people into categories as if somebody’s personality is a mental
disorder – which is indeed where personality disorder sits in the main
diagnostic systems used worldwide.
another practical problem with this ‘diagnostic’ approach to personality, which
is how little use it is in explaining anything… circular reasoning is really
common in practice, [for example] using repeated self-harm as part of the basis
for diagnosing a personality disorder and then using the diagnosed ‘condition’
to explain the repeated self-harm.”
And that’s not to mention the observation that a “disorder” that’s inherently part of who you are tends to “get better” over quite short periods of time.
perfectly possible to practice psychiatry, and the law, without this diagnostic
practice. Time we all started doing just that.