Does Understanding Psychosis and Schizophrenia exploit, disrespect, and marginalize service users?
The 180-page Understanding Psychosis and Schizophrenia produced by the British Psychological Society Division of Clinical Psychology is a puzzling document. We need to know its genre to decide what standards we apply in evaluating it. The authors tell us:
The report is intended as a resource for people who work in mental health services, people who use them and their friends and relatives, to help ensure that their conversations are as well informed and as useful as possible. It also contains vital information for those responsible for commissioning and designing both services and professional training, as well as for journalists and policy-makers. We hope that it will help to change the way that we as a society think about not only psychosis but also the other kinds of distress that are sometimes called mental illness.
“Well-informed” by what or whom? How is the information “vital”? Does “vital” assume “trustworthy” and “credible”?
As I will cover in a later blog issue, the document strikingly lacks the transparency that it would need to be taken seriously. Understanding Psychosis conforms to none of the well-defined processes and standards – checks and balances – expected to be met by professional organizations producing a report aimed at policy-makers and the general public.
For now, note these psychologists did not engage other professionals with complementary viewpoints and expertise. And the writing was closed to anyone not already expressing strongly held particular opinions. When critics nonetheless provided a detailed analysis of some crucial points at the popular blog, Mental Elf, the authors of Understanding Psychosis retweeted and favorited a denunciation of them as a “circle jerk,” i.e., mutually masturbating.
Key stakeholders were simply excluded – primary care physicians, social workers, psychiatrists, police and corrections personnel who must make decisions about how to deal with disturbed behavior, and –most importantly- the family members of persons with severe disturbance. There was no check on the psychologists simply slanting the document to conform to their own narrow professional self-interests, which we are asked to accept as “expertise.”
Is Understanding Psychosis evidence-based?
Understanding Psychosis occasionally cites some empirical findings, but can’t be seen as evidenced-based. That would require transparent, systematic strategies for gathering, interpreting, and integrating evidence that are simply not there.
Indeed, I think it is an excellent document for PhD students and trainees to practice debunking the creation of false authority by selective citation and miscitation and ignoring of contradictory studies. I suggest that they arm themselves with Google Scholar and tools provided in
Greenberg, S. A. (2009). How citation distortions create unfounded authority: analysis of a citation network. BMJ, 339.
Then start checking the citations provided for seemingly evidence-based statements in Understanding Psychosis. Ask questions like “What relevant studies are not cited? What studies are misinterpreted or simply cited for findings they did not contain?” Go to Google Scholar or Web of Science and find out.
For instance, take the opinion
In view of the problems with diagnoses, many researchers and clinicians are moving away from using them, and recent high-profile reports have recommended this. 55 56.
Check the references and see that the authors of Understanding Psychosis are the “many researchers and clinicians.” They are praising their own opinion pieces as “high-profile.”
55. British Psychological Society (2013). Division of Clinical Psychology position statement on the classification of behaviour and experience in relation to functional psychiatric diagnoses: time for a paradigm shift. Leicester: British Psychological Society.
56. Division of Clinical Psychology (2011). Good practice guidelines on the use of psychological formulation. Leicester: British Psychological Society.
The authors of Understanding Psychosis would have embarrassed themselves if they stated outright “It is our opinion that…and we consider our opinion high-profile and you should be duly impressed.” They depend on readers not checking references.
Understanding Psychosis is a collection of quotes. We might be inclined to interpret this as a strength, a sign of collaborative participatory research.
Or maybe this represents qualitative research allowing people to speak for themselves, rather than requiring that their experiences be processed through others’ filters and concepts. But bona fide, credible qualitative research requires that biases of investigators not intrude upon what they report. Some controls must be visibly present preventing the investigators from doing so.
Quotes are carefully selected to support by the psychologists opinions expressed before the document was prepared – like 15 years ago in their Recent Advances in Understanding Mental Illness and Psychotic Experiences.
Many quotes are not from people suffering from schizophrenia. In most instances, we are not given sufficient information to determine this. The authors systematically withhold information that would allow readers to determine who is and who is not a service user.
In this issue of Mind the Brain, I examine implications of this heavy dependence on these particular quotes. I will question whether Understanding Psychosis involves using and even exploiting service users, pitting more highly functioning ones against those who are functioning less well and their families who have to deal with them when they cannot take care of themselves.
Where do the quotes in Understanding Psychosis come from?
Some quotes were simply pasted in from the 2000 Recent Advances in Understanding Mental Illness and Psychotic Experiences.
Presumably people had relevant experience in the interim for our grasping the relevance to what it like living with schizophrenia and other psychoses – if that was actually their circumstances. Unfortunately, no follow-up is provided. The authors did not respond to repeated inquiries to asking whether they even obtained permission to use these quotes.
The quotes also have been trimmed of most details about their context that are available in original sources. Going to the original sources, we find the sources deliberately sampled people who were not service users.
Yup, people stripped of their identities are paraded out without the benefit of information that would render their experiences meaningful. Readers can’t independently assessment the uses to which the psychologist authors of Understanding Psychosis put these quotes.
What is not at issue is whether people with unusual experiences can get our attention when they talk about them. What is at issue is that a group of professionals take these quotes out of context and insist that they be accepted as the primary basis for – as their title states – our understanding of psychosis and schizophrenia.
Some of the quotes come from sources like
Jackson, L., Hayward, M. & Cooke, A. (2011). Developing positive relationships withvoices: A preliminary grounded theory. International Journal of Social Psychiatry, 57(5), 487–495.
Freeman, D., Garety, P.A., Bebbington, P.E., Smith, B., Rollinson, R., Fowler, D. et al. (2005). Psychological investigation of the structure of paranoia in a non-clinical population. British Journal of Psychiatry, 186, 427–435.
Heriot-Maitland, C., Knight, M. & Peters, E. (2012). A qualitative comparison of psychotic-like phenomena in clinical and non-clinical populations. British Journal of Clinical Psychology, 51(1), 37–53.
Jackson et al report
Five men and seven women were recruited through local NHS services, community advertisement and the local branch of the Hearing Voices Network.
Freeman et al report
An anonymous internet survey [was]… e-mailed the address of a website where they could take part in a survey of ‘everyday worries about others’.
Heriot-Maitland et report interviewing 12 participants, who reported “psychotic-like ‘out-of-the-ordinary’ experience (OOE) in the past five years.”
The quotes come from persons who are lucid enough to be recruited for small studies of , highly selected articulate persons. They certainly don’t display the distorted thought and behavior disorder and simple incoherence of many people with acute and chronic schizophrenia.
I agree with the Understanding Psychosis authors that few people who have ‘psychotic-like’ experiences meet criteria for a diagnosis of schizophrenia. But should we accept a carefully cherry-picked and edited group of quotes as the basis for revising our understanding of people who do meet criteria?
A number of quotes sound like people who are high functioning and showing an unusual degree of fantasy-proneness:
P 29 I work four days a week in a professional job; I own my own house and live happily with my partner and pets. Occasionally I hear voices – for example when I have been particularly stressed or tired, or I have seen visions after a bereavement. Knowing that many people hear voices and live well, and that some cultures see these experiences as a gift, helps me to never catastrophise or to worry that it may be the start of a breakdown. Although I am lucky that the experiences have never been as upsetting as some people’s, if someone had told me it was madness I could have got into a vicious cycle and struggled to get out.
Some of the quotes seem to represent clinically significant distress, but probably not psychosis or schizophrenia.
p 53 One thing that you might hear a lot about is that anxiety is a trigger of suspicious thoughts. I have never been that good at recognising my own anxiety. Quite a high level of anxiety is pretty normal for me. So normal that I wouldn’t normally do anything about it, but I now recognise that it sets the background for the expected potential threats in any situation, and so the suspicious thoughts and ideas of reference can pop right in there. I find people as having the most potential as a source of threat and because of that I am prone to suspicious thoughts about others. So now what I do is try to address the level of anxiety I feel in these situations. Adam
We’re not provided any information suggesting this suspiciousness is the psychotic symptom, paranoia.
P 43 After being almost killed by my ex-boyfriend when I was 16 I have had OCD. I have also developed paranoia about someone trying to kill me. If I have conflict with someone over anything I worry they are going to kill me or have someone come and kill me. I wake up worried someone is in my bedroom. I think about trying to be ready to protect myself if someone comes at me. I don’t think I would have this if I had not been traumatised half my life ago. Josephine
Yale Professor Joan Cook and other colleagues and I recently published a mixed method study of a national sample of psychotherapists providing residential treatment to veterans for posttraumatic stress disorder. A number reported difficulties deciding whether the “voices” that some veterans describe represented schizophrenia or vivid re-experiencing symptoms consistent with posttraumatic stress syndrome, for which exposure therapy is indicated.
The authors of Understanding Psychosis express a clear disdain for making diagnostic distinctions. But, it is important for clinicians to decide about the nature of clients’ distress in order to decide how to treat it. They best do so by formulating a hypothesis based on evidence tied to diagnoses, and then sympathetically probing. Gradual exposure to past trauma would likely tame the distress of someone meeting criteria for PTSD. But this could prove absolutely terrifying and decompensating for someone whom additional information suggested a diagnosis of psychosis. So clinicians have to have some evidence-based ideas to probe and make decisions or proceed blindly.
Some quotes probably refer to brief psychotic reactions. Responding to Understanding Psychosis, Allan Frances noted
Brief psychosis is considered a mental disorder, but it is just a transient one with excellent prognosis and no reason to expect long-term impairment. The symptoms emerge suddenly in response to stress and usually disappear just as suddenly (especially if the stress is removed), often never to reappear. This is common in many cultures, and I have seen it fairly often in college students away from home for the first time, in travelers in strange lands, and in people who have had something terrible happen to them. Antipsychotic medicine is needed only briefly, if at all.
Quotes were selected to fit the authors’ conviction that what other professionals call psychosis or schizophrenia is an understandable reaction to life events. But if we go to the larger literature, the associations between adverse experiences and psychosis, even in a meta-analysis of one of the authors of Understanding Psychosis, are not large enough that would suggest such strong causality. Adverse experiences are linked to lots of negative outcomes, but generally do not lead to psychosis or schizophrenia, even if there is a significant, but not overwhelming correlation.
Understanding Psychosis is not a transparent, systematic review of available evidence. Authors are mustering quotes to fit their preconceived notions. And leaving out quotes and details that don’t fit.
American psychiatrist Bernard “Barney” Carroll slammed the arrogant response of President of the American Psychiatric Association President Jeffrey Lieberman to media coverage of Understanding Psychosis. Barney called it over-the-top” and a “disservice to psychiatry.” Yet, this was not before he nailed the report for its “domesticating psychosis”:
Hallucinations become the experience of hearing voices; delusions become the experience of unusual beliefs; paranoid thinking becomes the experience of anxiety – never mind that the great majority of patients with clinical anxiety disorders are not at all paranoid in the way that psychotic patients are. They also make much of the fact that milder forms of these “experiences” are common in the general population – as are milder forms of many clearly medical symptoms. In short, they fail to acknowledge the state transition that demarcates mild or prodromal symptoms from outright psychotic illness.
… The BPS document fails adequately to convey the range of symptoms and associated behaviors in psychosis/schizophrenia. Even when these are mentioned, they are not addressed in a way that matches their clinical salience. Thus, decompensating psychotic crises are discussed unhelpfully in the framework of poor sleep habits. Acute inpatient psychiatric units are discussed in a patronizing way and are faulted as being unhelpful for some patients – never mind their rescue function. Catatonia as a common feature is not acknowledged. Psychotic terror and panic are not acknowledged. Formal thought disorder with truly crazy speech is not acknowledged.
A disclosure of my past.
I’m struck by the huge gap between the clear, articulate statements in the quotes provided in Understanding Psychosis and the incoherent mumbling and sometimes raging of people who are acutely psychotic. I wonder how many of the authors have ever tried to conduct an interview with someone in that state.
My clinical training involved six years of live supervision at the Mental Health Institute (MRI)provided by professionals widely recognized for their innovative work in analyzing the communication of persons considered as having schizophrenia – Paul Watzlawick, John Weakland, and Richard Fisch – although they would have objected to that diagnostic label.
At the time, I probably was more anti-diagnosis than many of the authors of Understanding Psychosis are today. But then as Director of Research at Mental Research Institute, I witnessed the disaster of its Soteria Project. I’ll leave that for another time, but Wikipedia states
The Soteria project was admired by many professionals around the world who aspired to create mental health services based on a social, as opposed to a medical, model. It was also heavily criticized as irresponsible or ineffective. The US Soteria Project closed as a clinical program in 1983 due to lack of financial support, although it became the subject of research evaluation with competing claims and analysis. Second generation US successors to the original Soteria house called Crossing Place is still active, although more focused on medication management.
While Paul, John, and Dick were widely recognized for their work analyzing communication with severely disturbed persons, they operated with a sense that at some point the disturbance of thought and behavior could became too much to carry on a discussion. And talking to highly disturbed persons, they knew not to take what was being said literally.
Who was selected for inclusion in Understanding Psychosis and who was excluded and left silent?
Many patients with acute and chronic psychosis are essentially nonverbal and cannot communicate their distress. Sure, they can’t provide coherent quotes for the psychologists who assembled Understanding Psychosis, but it is irresponsible for those psychologists to pretend these people don’t exist or that the quotes they assembled represent their best interest.
Many patients who meet criteria for schizophrenia will times be unable to take care of themselves or to make basic decisions. The burden of caring and decision-making will fall on family members if they are available. The alternative for persons with schizophrenia is to become homeless or go to jail or prisons because more appropriate beds and hospitals are not available. Nowhere in Understanding Psychosis are we reminded that persons with schizophrenia sometimes need sanctuary in hospitals.
Nowhere are we reminded that 10% of persons with schizophrenia will die by suicide. There is recent evidence that psychotic people may account for nearly 1/3 of suicide attempts with intent to die.
If I were a family member of someone with schizophrenia, I would be damn angry at the gap between the quotes in Understanding Psychosis what I knew about the person for whom I had to provide care. I’d also be angry that no one in my situation had been invited to participate as a stakeholder.
Psychologists in search of opportunities to work with YAVIS clients
The carefully selected quotes suggest people who would be more satisfying to work with than many persons with psychosis and schizophrenia. Reading them, I was immediately reminded of William Schofield[‘s 50-year-old book Psychotherapy: The Purchase of Friendship in which he lamented the strong tendency of mental health professionals wanting to work with the YAVIS: clients who are young, attractive, verbal, intelligent, and successful. One of the authors of Understanding Psychosis also co-authored the widely misrepresented Lancet study of cognitive behavioral therapy for psychosis and could tell us how difficult and ineffective it was doing therapy in that study with the older patients who had more psychotic episodes.
Despite the authors of the Lancet study having distanced themselves from earlier claims showed cognitive therapy had effects equivalent to antipsychotic medication, authors of Understanding Psychosis persist in making the claim to service users:
It would also appear that CBT can bring comparable benefits even when people choose not to take medication.
As we would expect from recommendations produced by tightly knit groups representing single professions, Understanding Psychosis is a bid for more resources for its authors to work with clients with whom they want to work. But like any policy recommendations, we need to examine the evidence and look at where those resources would come.
I’ll leave that discussion to another blog post, but take a look at the graph on the left. It represents the dramatic shift in resources from inpatient beds to outpatient treatment settings. The profoundly disturbed persons who need those beds would undoubtedly be less suitable for the conversations that the Understanding Psychosis psychologists want to be having. The long term reduction in inpatent services represents not so much deinstitutionalization as transinstutionalization. A lack of those beds means that persons in need of them are being relegated to jails and prisons. In the United States, the Los Angeles jails represent the largest mental health treatment facility in the United States and the conditions for the severely disturbed are abominable. Similar situations hold in the UK.
An inpatient psychiatrist recently wrote in the New York Times:
We also need to rethink how we care for another group of vulnerable patients who have been just as disastrously disserved by policies meant to empower and protect them: the severely mentally disabled.
He went on:
We have worked to minimize the use of restraint and seclusion on my unit, but have seen the frequency of both skyrocket. Nearly every week staff members are struck or scratched by largely nonverbal patients who have no other way to communicate their distress. Attempting to soothe these patients monopolizes the efforts of a staff whose mission is to treat acute psychiatric emergencies, not chronic neurological conditions. Everyone loses.
Somebody in the UK should be speaking up for the inarticulate vulnerable persons with schizophrenia needing inpatient beds who are silenced and marginalized by the authors of Understanding Psychosis. Where the hell is Simon Wessely when they need him?
Promoting an unrealistic view of schizophrenia?
If the authors of Understanding Psychosis were truly interested in providing authoritative information for persons with schizophrenia or psychosis, their family members, and professionals who come into contact with them, they would’ve provided the latest evidence about long-term course and outcome.
For instance, a key English study provides a 10 year follow-up individuals with a first episode of psychosis initially identified in either southeast London or Nottingham.
Morgan, C., Lappin, J., Heslin, M., Donoghue, K., Lomas, B., Reininghaus, U., … & Dazzan, P. (2014). Reappraising the long-term course and outcome of psychotic disorders: the AESOP-10 study. Psychological medicine, 44(13), 2713-2726.
At follow-up, of 532 incident cases identified, at baseline 37 (7%) had died, 29 (6%) had emigrated and eight (2%) were excluded. Of the remaining 458, 412 (90%) were traced and some information on follow-up was collated for 387 (85%). Most cases (265, 77%) experienced at least one period of sustained remission; at follow-up, 141 (46%) had been symptom free for at least 2 years. A majority (208, 72%) of cases had been employed for less than 25% of the follow-up period. The median number of hospital admissions, including at first presentation, was 2 [interquartile range (IQR) 1–4]; a majority (299, 88%) were admitted a least once and a minority (21, 6%) had 10 or more admissions. Overall, outcomes were worse for those with a non-affective diagnosis, for men and for those from South East London.Conclusions Sustained periods of symptom remission are usual following first presentation to mental health services for psychosis, including for those with a non-affective disorder; almost half recover.
Put differently, overall
12% (9% for non-affective) of our sample recovered within 6 months of contact with services and did not have a further episode, 20% (14% for non-affective) never had an episode lasting more than 6 months, and around 50% (40% for non-affective) had not experienced symptoms in the 2 years prior to follow-up.
And then there is the most recent comprehensive systematic review and meta-analysis.
Jääskeläinen, E., Juola, P., Hirvonen, N., McGrath, J. J., Saha, S., Isohanni, M., … & Miettunen, J. (2012). A systematic review and meta-analysis of recovery in schizophrenia. Schizophrenia Bulletin, sbs130.
We identified 50 studies with data suitable for inclusion. The median proportion (25%–75% quantiles) who met our recovery criteria was 13.5% (8.1%–20.0%). Studies from sites in countries with poorer economic status had higher recovery proportions. However, there were no statistically significant differences when the estimates were stratified according to sex, midpoint of intake period, strictness of the diagnostic criteria, duration of follow-up, or other design features. Conclusions: Based on the best available data, approximately, 1 in 7 individuals with schizophrenia met our criteria for recovery. Despite major changes in treatment options in recent decades, the proportion of recovered cases has not increased.
One in 7 people with schizophrenia meet criteria for recovery, and the portion has not increased in recent decades. Compare that with the unrealistically cheery assessment offered in Understanding Psychosis:
Even if people continue to hear voices or hold unusual beliefs, they may nevertheless lead very happy and successful lives. Sometimes a tendency to ‘psychosis’ can be associated with particular talents or abilities.
p 30 People who continue to have severe and distressing experiences may lead happy and successful lives in all other respects, such as work and relationships.
Sure, the authors of Understanding Psychosis keep reminding us of the cliché that everybody is different. But they are asking us to make clinical and policy decisions that are life altering for some people and could be life-ending for others. We can’t afford to ignore a larger body of relevant data.
In light of the data from long term follow-up studies, Understanding Psychosis should be seen as a cruel hoax perpetrated against more typical severely disturbed mental health service users, their family, and policymakers