The British Psychological Society recently produced a document entitled #UnderstandingPsychosis, which outlined views on definitions, aetiology, treatment and suggestions for improving services for people with psychosis and schizophrenia.
The first edition of this report was covered in a Mental Elf blog in 2014 (Understanding Psychosis and Schizophrenia: a critique by Laws, Langford and Huda), which focused on the sections on medication, CBT and the medical model (Understanding Psychosis and Schizophrenia, 2014).
In this blog we focus on revised sections, pertaining to definitions, aetiology and treatment (Cooke, 2017).
Methods
This is a narrative review, with evidence cited.
The report has been co-authored by a group of 25 people, which includes service users with lived experience of psychotic experiences, as well as influential senior psychologists. [Above paragraph added: 6/11/17].
Results
Psychosis is defined by hearing voices, paranoia, differences in thinking, problems concentrating and difficulty completing activities (they eschew the term “negative symptoms”).
Causes are limited to social deprivation (inequality) and life events (racism, discrimination and childhood trauma).
The authors state:
Experiencing multiple childhood traumas appears to give approximately the same risk of developing psychosis as smoking does for developing lung cancer.
They cite a study where items on a screening questionnaire correlated with recall of adverse events, with an odds ratio of 11 (Bentall et al., 2012).
They state half of people who experience psychosis will experience problems only once, and recover completely, quoting a review which cites 9 studies.
There is a section on treatment, including psychosocial interventions and medication, and concluding chapters covering implementation and thoughts regarding service provision.
Is it reasonable to compare the risk of developing psychosis after experiencing childhood trauma to the risk of developing lung cancer from smoking?
Conclusions
The main conclusions drawn are that conventional concepts of psychosis are flawed, with inadequate provision of psychological therapies for people with what is termed “psychosis”, services needing to change.
Strengths and limitations
This document aims to cover a wide remit, which is laudable.
It involves people who feel their needs are not addressed by conventional services. It emphasises choice and collaborative decision-making. It highlights what, a number of years ago, psychiatrists may have ignored regarding social environment, aetiology and outcome of psychosis. (The need to align with biology may have been a reaction to previous dominance of psychoanalysis). Aspects of the section on medication regarding collaboration and use of high dose antipsychotics are conventional.
Definition
In defining psychosis widely, it becomes difficult to comment on current practice. The authors state the prevalence of hearing voices is 10%, a recent WHO study finding this nearer 5% (McGrath et al., 2015), the authors acknowledge that what is picked up on screening questionnaires for psychotic experiences do not readily overlap with what a diagnostic interview for schizophrenia picks up (Kendler et al., 1996; Ochoa et al., 2008). In other words, they are defining a population of people with “psychosis” who do not meet conventional criteria, and appear to have over-estimated the prevalence.
The authors ignore symptoms conventionally viewed as psychotic symptoms, including bizarre delusions (Cermolacce, Sass and Parnas, 2010), flattened affect, movement disorder (seen before the advent of antipsychotics), thought disorder (which linguists have linked to speech problems seen in Neurology (McKenna and Oh, 2005)), ipseity disturbance (breakdown of ego boundaries and passivity) and cognitive impairment, which can be seen before illness onset. Symptoms given weight in the document, auditory hallucinations and suspiciousness are seen in 11.6% and 25.2% of people with diagnosed schizophrenia respectively, two years after acute exacerbation (and about 50% in acute illness), which would hardly make them pathognomonic of diagnosed schizophrenia (WHO, 1979). Murray and van Os have made the astute observation that: “the boundaries between normal mentation, common mental disorder and schizophrenia become blurred, if positive psychotic symptoms are used as a distinguisher” (van Os and Murray, 2013).
Crucially, symptoms omitted are seen in people with the highest level of impairment, who would fulfil criteria for treatment-resistant psychotic illness; the people for whom secondary services were originally set up for. One of the paradoxes in modern mental health services, is that there is under-allocation of resource to those suffering from the most disabling psychiatric syndromes, such as negative syndrome schizophrenia, and a shift of resource to the detection and probable over-treatment of relatively mild psychological issues (de Leon, 2014).
Criticism is made of the reliability of diagnoses, though the literature cited does not present peer-reviewed scientific literature.
There is no mention of bipolar psychosis, which has differences in aetiology, natural history and treatment response to non-affective psychoses. It also has a high degree of reliability (Tolin et al., 2016) . By ignoring this, and lumping “psychosis” together, they ignore the increased relapse rate in this, as well as greater number of hospitalisations (Chang et al., 2016).
The authors are apparently describing people not seen by mental health services; a point they acknowledge.
It is therefore unclear how they can comment on care provided to people within current services; a different population to what they define.
The authors of Understanding Psychosis ignore symptoms conventionally viewed as psychotic symptoms.
Outcome
The review stating 50% of people have recovery at follow-up is not a systematic review. A more recent systematic review suggested that only 13% of people with a diagnosis of schizophrenia met the criteria for recovery (Jääskeläinen et al., 2013). Long-term follow-up of people presenting with first episode psychosis show significant heterogeneity in symptomatic and functional outcome: a multi-centre UK first-episode study showing, in geographically defined populations, that 50% were in symptomatic remission at 10 years (a number of whom were taking antipsychotics), though only 15% fulfilled criteria for functional recovery (Revier et al., 2015).
Aetiology
The authors ignore aetiological factors, including head injury, cannabis, and psychoses caused by general medical conditions, e.g. epilepsy, and autoimmune conditions. Missing an organic cause of psychosis constitutes a serious clinical error. The evidence for discrimination is based on a preliminary report, and findings of delusional-like ideas in 7 people, with perceived discrimination, using the CIDI, which has poor psychometric properties compared to diagnostic interview (Jauhar and Lawrie, 2011).
It is mathematically impossible to explain how the factors they give could contribute to the prevalence they mention; the odds ratio for childhood trauma is between 2-4 in most meta-analyses (Morgan and Gayer‐Anderson, 2016) (with methodological limitations). The odds ratio for smoking and lung cancer varies depending on smoking status and cell type, anywhere up to around 100 (Pesch et al., 2012) and evidence they put for a similar association is based on items from a screening questionnaire that measures phenomena that are not related to what people conventionally call psychosis. Even then, the odds ratio of 11 does not sit well with odds given for current smokers and lung cancer.
Put simply, not everyone who experiences psychosis (however defined) has these risk factors, and not everyone who has these risk factors develops psychosis.
Missing an organic cause of psychosis constitutes a serious clinical error.
Treatment
In the section on psychological therapies they state:
On average, people gain around as much benefit from CBT as they do from taking psychiatric medication.
The authors cite various meta-analyses, but the effect sizes given are not comparable to those for psychotropic medication, especially when considering effects of blinding, even taking into account criticisms regarding included studies (Jauhar et al., 2014), see below.
No comment is made on relapse, the best-conducted study showing no benefit (Garety et al., 2008), which contrasts to evidence for antipsychotics (see below).
The section on medication has factual errors.
They state meta-analyses: “suggested that many people experience only slight benefits and only about 20 percent experience a significant improvement or prevention of reoccurrence”. The citation was not available, though the paper we assume they are referring to has caveats to this proclamation, and the article also reports reasonable effect sizes for functioning and quality of life (Leucht et al., 2017). This refers primarily to people with longer-term illness with acute exacerbation, as opposed to first-episode illness. In reference to the statement above, the effect size is still more than twice that for CBT for overall symptoms in blinded trials, and five times that for positive symptoms (Jauhar et al., 2014).
Regarding the 20% figure regarding relapse, meta-analysis by the same authors indicating 27% versus 64% of people had a relapse at one year after medication discontinuation, a relative risk of 0.4 (Leucht et al., 2012).
The authors are selective in quoting two observational studies which suggest improved outcome where medication was either stopped naturalistically (Harrow and Jobe, 2013) or decreased (Wunderink et al., 2013), whilst ignoring in this context an observational study showing poorer outcome in never treated people with schizophrenia followed up after 14 years (Ran et al., 2015), and a national register study showing longer life expectancy for people with schizophrenia taking antipsychotics (Tiihonen et al., 2009). They do not mention in citing the Wunderink study that at 18 months relapse rates were doubled in the discontinuation group, and only 20% of people actually discontinued medication at 18 months (Wunderink et al., 2007). Furthermore, in the study they cite, people in the discontinuation group were still taking an efficacious, albeit lower dose of antipsychotic than the other group (Wunderink et al., 2013).
The authors of Understanding Psychosis have not provided an independent and unbiased summary of treatments for people with psychosis and schizophrenia.
Implications for practice
This document gives theoretical views on what constitutes psychosis and what a group of influential senior psychologists and service users who have had psychotic experiences think would be helpful for people who experience the phenomena they define. The principles for care of people with psychosis emphasise collaborative and informed decision-making. [Above paragraph edited: 6/11/17].
However, given the definitions used, selective citing of evidence regarding aetiology and treatment, it is unclear how (or why) this guidance should be implemented within current services. It ignores a significant number of people currently seen in secondary services, and by selectively citing literature that corroborates their views, and making errors throughout, it is difficult to know how the conclusions drawn are justified, on the basis of evidence.
Selectively citing literature that corroborates a particular viewpoint is not evidence-based and ultimately unhelpful for people affected by psychosis.
Conflicts of interest
None.
Links
Primary paper
Cooke A. (Editor) (2017) Understanding Psychosis and Schizophrenia: Why people sometimes hear voices, believe things that others find strange, or appear out of touch with reality, and what can help: Revised version (PDF). A report by the British Psychological Society Division of Clinical Psychology.
Other references
Understanding Psychosis and Schizophrenia: a critique by Laws, Langford and Huda
Bentall, R. P. et al. (2012) ‘Do Specific Early-Life Adversities Lead to Specific Symptoms of Psychosis? A Study from the 2007 The Adult Psychiatric Morbidity Survey’, Schizophrenia Bulletin, 38(4), pp. 734–740. doi: 10.1093/schbul/sbs049.
Cermolacce, M., Sass, L. and Parnas, J. (2010) ‘What is Bizarre in Bizarre Delusions? A Critical Review’, Schizophrenia bulletin, 36(4), pp. 667–679.
Chang, W. C. et al. (2016) ‘Three-year clinical and functional outcome comparison between first-episode mania with psychotic features and first-episode schizophrenia’, Journal of Affective Disorders, 200, pp. 1–5. doi: 10.1016/j.jad.2016.01.050.
Garety, P. A. et al. (2008) ‘Cognitive–behavioural therapy and family intervention for relapse prevention and symptom reduction in psychosis: randomised controlled trial’, The British Journal of Psychiatry, 192(6), pp. 412–423. doi: 10.1192/bjp.bp.107.043570.
Harrow, M. and Jobe, T. H. (2013) ‘Does Long-Term Treatment of Schizophrenia With Antipsychotic Medications Facilitate Recovery?’, Schizophrenia Bulletin, 39(5), pp. 962–965. doi: 10.1093/schbul/sbt034.
Jääskeläinen, E. et al. (2013) ‘A systematic review and meta-analysis of recovery in schizophrenia’, Schizophrenia Bulletin, 39(6), pp. 1296–1306. doi: 10.1093/schbul/sbs130.
Jauhar, S. et al. (2014) ‘Cognitive-behavioural therapy for the symptoms of schizophrenia: systematic review and meta-analysis with examination of potential bias’, The British Journal of Psychiatry, 204(1), pp. 20–29. doi: 10.1192/bjp.bp.112.116285.
Jauhar, S. and Lawrie, S. M. (2011) ‘Are these results clinically relevant?’, BMJ, 342.
Kendler, K. S. et al. (1996) ‘Lifetime Prevalence, Demographic Risk Factors, and Diagnostic Validity of Nonaffective Psychosis as Assessed in a US Community Sample: The National Comorbidity Survey’, Archives of General Psychiatry, 53(11), pp. 1022–1031. doi: 10.1001/archpsyc.1996.01830110060007.
de Leon, J. (2014) ‘Paradoxes of US psychopharmacology practice in 2013: undertreatment of severe mental illness and overtreatment of minor psychiatric problems’, Journal of Clinical Psychopharmacology, 34(5), pp. 545–548. doi: 10.1097/JCP.0000000000000126.
Leucht, S. et al. (2017) ‘Sixty Years of Placebo-Controlled Antipsychotic Drug Trials in Acute Schizophrenia: Systematic Review, Bayesian Meta-Analysis, and Meta-Regression of Efficacy Predictors’, American Journal of Psychiatry, 174(10), pp. 927–942. doi: 10.1176/appi.ajp.2017.16121358.
Leucht, S. et al. (2012) ‘Antipsychotic drugs versus placebo for relapse prevention in schizophrenia: a systematic review and meta-analysis’, The Lancet, 379(9831), pp. 2063–2071. doi: 10.1016/S0140-6736(12)60239-6.
McGrath, J. J. et al. (2015) ‘Psychotic Experiences in the General Population: A Cross-National Analysis Based on 31,261 Respondents From 18 Countries’, JAMA psychiatry, 72(7), pp. 697–705. doi: 10.1001/jamapsychiatry.2015.0575.
McKenna, P. J. and Oh, T. M. (2005) Schizophrenic Speech: Making Sense of Bathroots and Ponds that Fall in Doorways. Cambridge University Press.
Morgan, C. and Gayer‐Anderson, C. (2016) ‘Childhood adversities and psychosis: evidence, challenges, implications’, World Psychiatry, 15(2), pp. 93–102. doi: 10.1002/wps.20330.
Ochoa, S. et al. (2008) ‘What is the relative importance of self reported psychotic symptoms in epidemiological studies? Results from the ESEMeD–Catalonia Study’, Schizophrenia Research, 102(1–3), pp. 261–269. doi: 10.1016/j.schres.2008.04.010.
Organization, W. H. (1979) ‘Schizophrenia : an international follow-up study’. Available at: http://www.who.int/iris/handle/10665/41598 (Accessed: 22 October 2017).
van Os, J. and Murray, R. M. (2013) ‘Can we identify and treat “schizophrenia light” to prevent true psychotic illness?’, BMJ (Clinical research ed.), 346, p. f304.
Pesch, B. et al. (2012) ‘Cigarette smoking and lung cancer – relative risk estimates for the major histological types from a pooled analysis of case-control studies’, International Journal of Cancer. Journal International du Cancer, 131(5), pp. 1210–1219. doi: 10.1002/ijc.27339.
Ran, M.-S. et al. (2015) ‘Different outcomes of never-treated and treated patients with schizophrenia: 14-year follow-up study in rural China’, The British Journal of Psychiatry, p. bjp.bp.114.157685. doi: 10.1192/bjp.bp.114.157685.
Revier, C. J. et al. (2015) ‘Ten-Year Outcomes of First-Episode Psychoses in the MRC ÆSOP-10 Study’, The Journal of Nervous and Mental Disease, 203(5), pp. 379–386. doi: 10.1097/NMD.0000000000000295.
Tiihonen, J. et al. (2009) ‘11-year follow-up of mortality in patients with schizophrenia: a population-based cohort study (FIN11 study)’, The Lancet, 374(9690), pp. 620–627. doi: 10.1016/S0140-6736(09)60742-X.
Tolin, D. F. et al. (2016) ‘Psychometric Properties of a Structured Diagnostic Interview for DSM-5 Anxiety, Mood, and Obsessive-Compulsive and Related Disorders’, Assessment. doi: 10.1177/1073191116638410.
Understanding Psychosis and Schizophrenia (2014) National Elf Service. Available at: https://www.nationalelfservice.net/publication-types/report/understanding-psychosis-and-schizophrenia-a-critique-by-laws-langford-and-huda/ (Accessed: 22 October 2017).
Wunderink, L. et al. (2007) ‘Guided discontinuation versus maintenance treatment in remitted first-episode psychosis: Relapse rates and functional outcome.’, Journal of Clinical Psychiatry.
Wunderink, L. et al. (2013) ‘Recovery in remitted first-episode psychosis at 7 years of follow-up of an early dose reduction/discontinuation or maintenance treatment strategy: long-term follow-up of a 2-year randomized clinical trial’, JAMA psychiatry, 70(9), pp. 913–920. doi: 10.1001/jamapsychiatry.2013.19.
Photo credits
- Photo by Amritanshu Sikdar on Unsplash
- Photo by Hush Naidoo on Unsplash
- Photo by Max Sandelin on Unsplash
This review is a joke. Firstly, they both work for the Institute for Psychiatry so when you state ‘no conflict of interest’ then that’s clearly nonsense as they are both invested in promulgating psychiatry’s hegemony . Secondly, the entire review is carried on psychiatries terms, i.e. its entirely positivist. The belief that investigations into humans where they are both object and subject can be objective is naive at best and delusional at worst. Thirdly (and most damningly) they are failing to see the wood for the trees. The fact is psychiatry has failed in managing and curing mental illness long term on objective terms (when compared to the developing world). They can ‘bike shed effect’ as much as they like but it won’t change their shitty patient outcomes. This is the first time I have heard of this website and to claim impartiality and ‘scientific debate’ makes it a complete joke and those whose who run it indescribably naive and ignorant. Its 2017. Get with the (interpretivist) programme.
Incorrect.
It is
The Institute of Psychiatry, Psychology and Neuroscience.
P
Can hardly take issue with his comment when your little bio at the bottom just says “Institute of Psychiatry”! And being terse in your response about this point makes you look 12.
Sorry David,
P
David, many of the authors of this very report are from the IoP/IoPPN.
I’m not sure why people are calling this review balanced and fair when it is entirely focussed on perceived limitations. A focus on limitations is not necessarily scientific. with no room for scientific discourse. If you read the blog alone it seems like the document has nothing worthwhile to offer. It’s a huge piece of work with many perspectives so I’d firstly ask interested lay people to read it & see what they find helpful/unhelpful.
I will in no way do the piece justice (partly why such a short blog on it may also not have been able to) but some highlights for me:
Definitions include applied examples of people’s experiences and highlight people’s cultural circumstances. Aetiology includes helpful experiences of psychosis (not all pathological) and people’s lived experiences. Treatment recommendations include experiential examples of how to collaboratively formulate a person’s experience with them. Service user choice, community/systemic response and self-help in treatment are novel and applied practical implications.
Above all, Parts 2 & 4 (which seem to be ignored entirely in the review) offer hugely practical and forward-thinking learnings on making sense of why people experience psychosis and guidance on a paradigm shift that takes service users’ perspectives into account (which has been lacking until recently).
I also don’t understand the overtly negative trajectory of Mental Elf’s output. Why are all positive comments about the blog being retweeted yet critical ones are not? The totality of one tweet in particular is again about what Understanding Psychosis does not provide (i.e. independent and unbiased summary)…but surely we know that nothing is independent or free of bias?!
A False and dangerous prospectus….?
Understanding Psychosis and Schizophrenia:
British Psychological Society (BPS), Division of Clinical Psychology (2017)
The Understanding Psychosis and Schizophrenia (UP&S) document was written by Anne Cooke and 24 prominent psychologists including Peter Kinderman, Richard Bentall and Lucy Johnstone. Anne, Richard, Peter and Lucy have contributed to a lively debate which followed the publication of our critique on the mental-elf web-site. Debate was also exchanged on Twitter.
Here we cover some aspects of our critique of the UP&S document, and the debate which followed.
– Politics + science, an uncomfortable mix –
1.1 The UP&S document is a policy document, a manifesto. It is a political document. Presumably, the desire of the authors is to enhance their influence over policy-makers.
1.2 Statements in the foreword such as “It contains vital information for those responsible for commissioning services and professional training, as well as for journalists and policy-makers”, makes the political aims of UP&S clear to readers from the outset.
1.3 The main policies of UP&S are outlined in the executive summary, but for a proper critique of UP&S, it is necessary to go through the scientific arguments and the references in the main body of the text. The headline political statements in the executive summary are made on the basis of the science in the main body of the text. Those scientific arguments have been debunked in a series of comments by Sameer and I posted below.
1.4 We have gone through the main body of the text in detail, debunking the scientific arguments one by one. Having done so, we conclude that the headline statements in the UP&S document are unfounded. We consider that the UP&S document is a false prospectus.
– Nothing new in UP&S, it is Neo-Freudianism all over again –
2.1 It is surely no coincidence that the opening quote in UP&S is from Karl Menninger. Menninger was a leading authority when talking therapy (neo-Freudianism) dominated teaching, research and thinking in American Psychiatry. Until the 1970s, so-called ‘biological’ psychiatry was in a subordinate position in America. Many in the UK may not be aware of this.
2.2 The manifesto of the neo-Freudians in American psychiatry has many parallels with the UP&S document. The main elements at the core of neo-Freudianism are the same as the UP&S document.
2.3 The core of Neo-Freudianism and UP&S are as follows.
A) Psychiatric diagnoses are to use Menninger’s phrase “useless, restrictive and obstructive”. B) There is no fundamental difference between major psychiatric syndromes and normal human distress. Again in the words of Menninger “it is now accepted that most people have some degree of mental illness”.
c) The roots of mental illness are to be found in early relationships (e.g. parenting-style) or in society (e.g. racism)
d) The approach to treatment should be talking therapy, either analysis (for the neo-Freudians) or CBT (for UP&S).
e) Mental illness can be prevented by social change. For the neo-Freudians “If we can improve society, then we can eradicate mental illness”. In UP&S “We need to invest in prevention by taking measures to reduce abuse, deprivation and inequality”.
2.4 Neo-Freudianism was dominant in American psychiatry between the late 1940s and 1970s. Academic positions and training were dominated by neo-Freudians. Resistance to the neo-Freudian view was met with harsh criticism.
2.5 In the neo-Freudian era concepts such as “refrigerator mother”, “schizophrenogenic mother” and “schizophrenogenic family” were invoked as the causes of major mental illness. The UP&S document resonates “…difficult relationships in childhood and adolescence, which can arise for all kinds of reasons, may be an important contributing factor for some people. In some cases they might be highly significant”.
2.6 We conclude that there is very little separating the neo-Freudian and UP&S manifestos.
– Argumentum ad absurdum –
3.1 The authors of the UP&S document were asked to consider DiGeorge syndrome. This is a condition caused by a loss of 20 or so genes. Sufferers have a very high risk of schizophrenia. Compared to the general population people with DiGeorge syndrome are over 60 times more likely to have schizophrenia.
3.2 In regard to DiGeorge syndrome, Richard Bentall responded, “Stop this unthinking neuro-reductionist crap! Nobody knows why DiGeorge syndrome is associated with psychosis. Could easily be socially mediated (increased adverse experience).”
– Exposing dangerous dogma –
4.1 The UP&S document had no mention of an important condition called postpartum psychosis. The facts of this condition are as follows. It occurs in about 1 in 1000 pregnancies. Women with bipolar disorder have a very high risk of postpartum psychosis, with over 60% being affected if un-medicated. Postpartum psychosis can be very severe and escalates quickly. About 40-50% of mothers will have delusions regarding their baby. In about 4% of cases there is the tragic consequence of infanticide. For cases such as this the court will invariably judge that the mother was suffering from a mental disorder and thus cannot be held responsible for her actions. Mental disorder is a legal concept which predates the emergence of psychology and psychiatry as disciplines. The legal concept can be traced back centuries across cultures. It is an important part of the law.
4.2.1 But according to Anne Cooke, an author of UP&S and another BPS document called Understanding Bipolar disorder, “’Postpartum psychosis’ even the name reflects historical colonisation by male professionals come to think of it”. ”we need to offer care, but there is no need for reductionist, imposed explanations”.
4.2.2 Another UP&S author Lucy Johnstone had this take, “Physical invasion by professionals, loss of control of body size and shape, feeling trapped, feeling scared, feeling alone, plus huge social expectations to be happy.”
4.2.3 For Richard Bentall, causation seemed to be more important than the clinical picture, “Just wondering, have you noticed that, for many women, childbirth is a physically and psychologically traumatic event?”
4.4.4 Referring to the concept of mental disorder, an adherent of the UP&S view wrote “The term “disorder” is one we seem to be stuck with, but it has some rather unhelpful connotations, as Peter Kinderman et al argue.”
4.4.5 Anne Cooke added, “It all depends on what you mean by ‘mental disorder’”.
4.4.6 I responded, “Mental disorder is a legal (not a medical) term. It allows the poor woman to be treated as a patient, and not be punished again in the criminal justice system”.
– Addressing very dangerous dogma –
5.1 The facts on postpartum psychosis are as follows We have repeatedly pointed this out to the authors of the BPS documents.
5.2 Firstly, discontinuation of bipolar medication during pregnancy is associated with very high rates of relapse. Those who stop medication have an 85% chance of relapse during pregnancy versus a 37% chance for those who remain on medication.
5.3 Secondly, for women with bipolar, stopping medication during pregnancy increases the chance of relapse in the post-partum period from 66% off-medication to 23% on-medication.
5.4 The Understanding Bipolar Disorder by the BPS has a very small section on postpartum psychosis.
5.5 In the BPS document, the following statement is made “Firstly, medication may not be an option, for example in the case of pregnant women, as the potential side effects of the medication are too dangerous”.
5.6 We have asked the BPS authors to review the point made above. We believe that it needs to be addressed. It is completely at odds with a body of research findings and clinical practice. The advice in the BPS document on Bipolar disorder, if followed, constitutes a serious risk of harm to bipolar women and their newborns. It needs addressing.
5.7 So far there has been no answer except for:
Richard Bentall, “I don’t think you’re interested in well thought out responses TBH. Everything I’ve seen from you seems confrontational/point scoring so I’ll pass and keep on working on my next book”.
Anne Cooke: “I’m muting this conversation”.
– We invite readers to share their thoughts and opinions –
PM & SJ
I believe this document is compiled by persons who volunteer their time and skills. I think it is a good alternative resource from just reading NICE guidelines, research and text books as it has real stories throughout. Our psychologist has created a training package from it which is going down well in our recovery college and with staff.
I want to preface my comments by making it clear that I think the developers of Understanding Psychosis came at this with the best of intentions, their goal to either counter or counter-balance the sort of overdone “doom and gloom” narratives and limited treatment options we so often encounter in first person accounts. Unfortunately, the existence of one real or perceived extreme does not justify another and the true victims here are those with psychotic disorders/diagnoses/disabilities whose lives are in fact severely impacted, who have or will experience decades of “real” disability, who have or will end up unemployed, in poverty, living on the streets or in board-and-cares or state facilities. (The long-term schizophrenia outcomes literature has documented these grim realities about as thoroughly as one can.)
Voices and paranoia are currently the sexy, in vogue, symptoms but, as the blog’s authors point out, in no way saturate the experience (or formal diagnosis) of psychosis, particularly in its more chronic and disabling forms. Indeed the current UP document essentially erases domains such as the major linguistic/cognitive/communicative challenges found in psychosis/schizophrenia and along with them the individuals whose lives they have indeed hijacked or detailed. While I completely agree that temporary ostensible disorganization or symbolic thinking can and should be grappled with as a meaning laden , resolveable experience, this sort of scenario is a far cry from the realities and challenges of the individual, for example, who 24/7 and for decades on end is unable to communicate, unable to understand or track what is said to them and descends into poverty/homelessness as a result. Do these stories–and, empirically speaking, the fact that they characterize an enormous proportion of those provided intensive services for long-term disability–really just not matter? I very much doubt that the UP authors think this–again, these are people who deeply care–but the fact remains that UP perfornatively, in the relative space it affords certain stories and voices and not others, in its rhetorical flourishes and emphases, in the underlying research it chooses to draw on or sidestep, only further marginalizes these experiences, these people, their stories and the work of the carers and clinicians who work with them.
Are we really doing justice to the issues here? Are we validating or rather invalidating the very population that, I hope we all agree, has been subject to true extremes of marginalization? And can we discuss this without the conversation devolving into polarities and disciplinary bickering, can we ask ourselves the truly hard questions about social justice and equity and what, in this space, these terms might actually mean?
James, your insights reminded me of two pieces, which I’ll quote below.
The first is by Femi Oyebode in his “Madness at the theatre, 2012”. The second is from Jacques Derrida’s “Cogito and the history of madness, 1967”.
Femi Oyebode…
“…the delusional content of speech is carefully searched for meaning and the noise of formal thought disorder is scanned for a comprehensible signal. But, perhaps more importantly, the transgressive source of the affliction is sought. Parents feel guilt for the illness of their children, continually seeking the moral origins of this terrible affliction. The logic of narrative coherence demands that events in the social world have a morally comprehensible origin. Greek tragedy operates at this level of reasoning, as does all literature.”
Jacques Derrida…
“The misfortune of the mad, the interminable misfortune of their silence, is that their best spokesmen are those who betray them best. When one attempts to convey their silence
itself, one has already passed over to the side of the enemy, the side of order, even if one fights against order from within it.
The unsurpassable, unique and imperial grandeur of the order of reason, that which makes it not just another structure, is that one cannot speak out against it except by being for it, that one can protest it only from within it; and within its domain.
Derrida goes on, The admission of the difficulty can be found in sentences from Foucault, which I simply cite, in order not to deprive you of their dense beauty: ‘The perception that seeks to grasp the miseries and murmurings of madness in their wild state, necessarily belongs to a world that has already captured them. The liberty of madness can only be understood only from high in the fortress that holds madness prisoner. And there madness possesses only the morose sum of its prison experiences, its mute experience of persecution’
Psychotic symptoms in the setting of childhood trauma are more typical of borderline personality disorder than schizophrenia and, as such, are unlikely to respond to the same treatments.
This comment assumes a clear distinction between ‘schizophrenia’ and ‘borderline personality disorder’ – that is, that they are natural kinds – which is one of the issues in contention. If ‘schizophrenia’ and ‘borderline personality disorder’ are diagnoses with poor validity, it does not much make all that much sense to argue whether childhood trauma is more closely associated with one diagnosis rather than the other.
In fact, the limitations of psychiatric diagnoses have been debated for decades and there is now widespread recognition that categorical taxonomies of the sort found in the DSM or ICD have little or no scientific validity. Indeed, this recognition has led to concerted efforts to develop alternative taxonomies based on the analyses of processes (NIMH’s RDoc programme; Insel, T., et al. (2010). Research Domain Criteria (RDoC): Toward a new classification framework for research on mental disorders. American Journal of Psychiatry, 167, 748-751), empirical studies of symptom covariation (e.g. the HiTOP programme; Kotov, R., et al. (2017). The Hierarchical Taxonomy of Psychopathology (HiTOP): A dimensional alternative to traditional nosologies. Journal of Abnormal Psychology, 126, 454-477) or causal relationships between symptoms (network models; e.g. Borsboom, D., & Cramer, A. O. J. (2013). Network analysis: An integrative approach to the structure of psychopathology. Annual Review of Clinical Psychology, 9, 91-121).
That said, the close association between childhood trauma and ‘schizophrenia’ or related diagnoses in adulthood is uncontestable. The best evidence can be found in my meta-analysis of case-control, epidemiological and prospective studies (Varese, F., Smeets, F., Drukker, M., Lieverse, R., Lataster, T., Viechtbauer, W., Read, J, van Os, J.& Bentall, R. P. (2012). Childhood adversities increase the risk of psychosis: A meta-analysis of patient-control, prospective and cross-sectional cohort studies. Schizophrenia Bulletin, 38, 661-671. doi:10.1093/schbul/sbs050). The risk of psychosis given childhood trauma is indeed comparable to the risk of cancer given smoking. The resistance of some (but by no means all) in psychiatry to recognise this association baffles me and I can only assume that it is every bit as ideological as the BPS Understanding Psychosis report is falsely claimed to be.
History repeats:
Richard is right about the limitations of psychiatric classification systems. And this is nothing new; The 19th century continental psychiatrists struggled to systematise in exactly the same way. Islamic medicine in the golden era (circa ~1000 AD), similar themes.
Given the history, I don’t share Richard’s enthusiasm that someone, somewhere will finally succeed and end the confusion, by grouping and re-arranging words into a pattern, that leaves no loose threads of inconsistency for the next generation of angry young taxonomists.
Real-world clinical practice:
Such thoughts are irrelevant of course, for clinical practice in the UK. The system demands a recorded ICD-10 diagnosis. Clinicians find a way to work around such orders.
In early intervention services, the wonderfully ambiguous, catch-all, F29: non-organic psychosis otherwise un-specified (or some such language) avoids indiscriminate use of the term “schizophrenia”.
That said, there are a proportion of patients who exhibit such marked social decline and loss of personality for whom no alternative descriptor is forthcoming. A lot of clinicians feel this group are being short-changed by modern mental health services, but that is another story.
Fuzzy boundaries:
Richard talks about the emotional unstable / borderline category. If my interpretation is correct, he thinks there is no clear distinction between borderline personality disorder (PD) and schizophrenia.
My strong impression is that EI clinicians who have gained some experience of the range of presentations, can fairly easily ‘spot’ PD on referral, as the story is heard. And I’m talking about clinicians from across the different disciplines.
The language is awful of course, “personality disorder” (if ever there was a judgement on another). But the system is set up so that PD patients get sent on to another service.
The presence of voices or paranoia can evoke some ‘debate’ at the interface between the services, and quite often, PD patients remain in the EI team, which is fine. But the overall clinical picture is not schizophrenia, or even psychosis and the better approach is psychological (around relationships, coping, personal growth, maturation) rather than drug treatment, which is often not very helpful.
Core prototypes:
The fuzzy boundaries pre-suppose a central core, a prototype. The obsessional prototype differs from the ADHD prototype. The bipolar I prototype is different from the delusional disorder prototype. And the Alzheimer’s prototype…
Although Richard might disagree, the schizophrenia prototype(s) differ from the borderline PD prototype.
I think a lot of experienced psychiatrists pay more attention to the presence of negative symptoms rather than voices and paranoia (unless the voices and paranoia have certain characteristics). The negative symptoms point to schizophrenia; voices and paranoia are non-specific.
A question of respect:
Anyway I’m going to end with a question, actually 2 related questions, mainly because I clearly don’t have any answers.
Before I set my question I want to acknowledge respect to all clinicians, regardless of school or background training, who endeavor to maintain a listening ear and try their hardest for the well-being of their patients, despite all the pressures, bureaucracy and so forth. Enough said.
Q. Are we over-diagnosing mental/psychological illness?
Q. Is our culture really so psychologically toxic?
Perhaps concentrating on solving the problems a person has with living instead of the seemingly fixated approach reliant of diagnoses we have now would help?
In response to the first question prehaps the question needs reframing into a more marcocosmic enquiry of “what are we doing as a society that’s causing such high levels of emotional and cognitive distress in increasing numbers of people?”
I also question where long term use of high doses of nueroleptic medication is helpful or infact extremely damaging. How is someone who jerks and drools supposed not to be a victim of hate crime when walking around their community?
I’d also be interested if anyone knows of any studies regarding negative symptoms that start after the introduction of medication. The criteria for diagnosis of schizophrenia lists positive symptoms only. So many of the people given that horrendous label of schizophrenia are in fact so gentle with ‘innocent’ natures it raises more questions around the high doses of medication which has the potential to completely zombifie them and lower they’re already low resistance to exploitation. Ask a person labeled with schizophrenia if you can have a cigarette or borrow money and by and large they will find it harder than most to say no due to lack of boundaries.
Professor Bentall’s points illustrate that there are similarities and differences in views between the writers of the blog and views of people who wrote the BPS document.
Professor Bentall has undoubtedly made a significant contribution to the literature on childhood trauma and risk of psychosis. I would agree with the concept of the RDoC criteria-indeed our recent JAMA Psychiatry article suggested this for dopamine synthesis capacity and presence of positive psychotic symptoms in people with diagnoses of bipolar psychosis and schizophrenia (1). However, there still exists significant debate regarding validity and utility of psychiatric diagnoses-differing opinions to Professor Bentall do exist regarding validity and utility of diagnostic constructs, including criticisms of some of the techniques he has cited (2,3).`A recent blog summarises these issues more eloquently than I could (4).
The meta-analysis he cites (5) has been cited over 700 times on google scholar, which is quite an achievement, given it was only published 5 years ago. We do not dispute these odds ratios, though do cite a recent review that goes through this literature in more depth, so that interested readers are aware of methodological issues and the current state of play (6).
I still cannot concur, however, with the comments on this risk being equivalent to smoking and lung cancer. The study we cite shows that odds ratios vary from 2 in female former smokers and adenocarcinoma to over 100 in male smokers of more than 30 cigarettes daily (7). Table 1 in the study we cite gives the spread for Odds Ratios, and for most doctors, small cell and squamous cell carcinoma are the classical tumours associated with smoking.
Even taking a generic, and less specific approach (smoking and risk of lung cancer), the CDC quotes the risk as 15-30 times higher for smokers than non-smokers (8).
I cannot see how the odds ratios Professor Bentall has published in his meta-analysis are equivalent to these figures.
1. Jauhar S, Nour MM, Veronese M, Rogdaki M, Bonoldi I, Azis M, et al. A Test of the Transdiagnostic Dopamine Hypothesis of Psychosis Using Positron Emission Tomographic Imaging in Bipolar Affective Disorder and Schizophrenia. JAMA Psychiatry [Internet]. 2017 Oct 11 [cited 2017 Oct 12]; Available from: https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2656683
2. Lawrie SM, Hall J, McIntosh AM, Owens DGC, Johnstone EC. The “continuum of psychosis”: scientifically unproven and clinically impractical. Br J Psychiatry. 2010 Dec;197:423–5.
3. Guloksuz S, Pries L-K, van Os J. Application of network methods for understanding mental disorders: pitfalls and promise. Psychol Med. 2017 Jun 5;1–10.
4. vaughanbell A. Why we need to get better at critiquing psychiatric diagnosis [Internet]. Mind Hacks. 2017 [cited 2017 Nov 2]. Available from: https://mindhacks.com/2017/09/19/why-we-need-to-get-better-at-critiquing-diagnosis/
5. Varese F, Smeets F, Drukker M, Lieverse R, Lataster T, Viechtbauer W, et al. Childhood Adversities Increase the Risk of Psychosis: A Meta-analysis of Patient-Control, Prospective- and Cross-sectional Cohort Studies. Schizophr Bull. 2012 Jun 18;38(4):661–71.
6. Morgan C, Gayer‐Anderson C. Childhood adversities and psychosis: evidence, challenges, implications. World Psychiatry. 2016 Jun;15(2):93–102.
7. Pesch B, Kendzia B, Gustavsson P, Jöckel K-H, Johnen G, Pohlabeln H, et al. Cigarette smoking and lung cancer – relative risk estimates for the major histological types from a pooled analysis of case-control studies. Int J Cancer. 2012 Sep 1;131(5):1210–9.
8. CDC – What Are the Risk Factors for Lung Cancer? [Internet]. [cited 2017 Nov 2]. Available from: https://www.cdc.gov/cancer/lung/basic_info/risk_factors.htm
I decided to read the Understanding Psychosis and Schizophrenia report after Dr Ben Goldacre and Professor Simon Wessely endorsed this critical blog. I wanted to see for myself whether the Mental Elf critique is justified. I am commenting anonymously because I have no interest in entering into acrimonious debates with some of the more unpleasant critics of the Understanding Psychosis report. I have no connection with this report, although I am broadly sympathetic to its general principles.
I think the Mental Elf is a good resource, however I can only say I was shocked by the inaccuracies in this particular blog:
First, according to the blog: “There is no mention of bipolar psychosis, which has differences in aetiology, natural history and treatment response to non-affective psychoses. It also has a high degree of reliability (Tolin et al., 2016) . By ignoring this, and lumping “psychosis” together, they ignore the increased relapse rate in this, as well as greater number of hospitalisations (Chang et al., 2016).”
This statement is not true. The report authors did not ignore this issue; rather, they refer the readers to an entirely separate report. According to page 10: “A tendency to experience extreme moods has also sometimes been seen as mental illness, in this case ‘bipolar disorder’. Whilst many of the issues are similar, ‘bipolar disorder’ is the subject of a separate report 3 and so will not be discussed at length here”.
Second, according to the blog: “The authors are apparently describing people not seen by mental health services; a point they acknowledge. It is therefore unclear how they can comment on care provided to people within current services; a different population to what they define.”
This statement is partly untrue and partly reflective of an inexplicable misunderstanding of the report. The report clearly discusses people seen by mental health services at great length throughout. However the whole point of the report, seemingly completely missed by the blog authors, is to draw attention to how the experience of people seen by mental health services exist within the context of a much wider psychosis continuum. The Mental Elf critique makes sense only if you fundamentally reject that such a continua exists, but one of the blog authors (Jauhar) has himself relied on it in other published work (e.g., Bhavsar et al., 2017), so it is hard to give him benefit of the doubt here. It is a shame that the Mental Elf blog did not engage with this genuinely important issue, and the underlying thrust of their critique really seems to be built on a sort of category error, as well as problematic reasoning. It’s a little hard to discern, but this appears to be:
If psychosis is not always severe, then the report is useful.
Psychosis is sometimes severe, therefore the report is not useful.
Third, the blog states “Criticism is made of the reliability of diagnoses, though the literature cited does not present peer-reviewed scientific literature.”
This statement is also not true. Both citations 19 and 20 on p22 of the report are peer-reviewed scientific literature. Reference 18 is to an accessible work by a major philosopher of science, Ian Hacking.
Fourth, the blog authors claim the report overestimates recovery from psychosis, but they do so by misrepresenting the report’s arguments. The report states “Even for those whose experiences are distressing and lead to contact with services, the outlook is much better than is commonly assumed. About half will experience problems on one occasion only and then recover completely.” Although a little unclear, the report is either referring to those who have experienced a first episode, or those at risk of psychosis.
However the Mental Elf blog states “The review stating 50% of people have recovery at follow-up is not a systematic review. A more recent systematic review suggested that only 13% of people with a diagnosis of schizophrenia met the criteria for recovery (Jääskeläinen et al., 2013). The Jääskeläinen review includes studies of people at various stages of their illness, and applies a very stringent definition of clinical recovery. By making this point, the blog unfairly makes the report look ill-informed. Had the blog authors engaged with the report’s actual argument, they would have found a more recent meta-analysis, published in the British Journal of Psychiatry in June this year, that suggests 58% of those with a first episode will experience remission, and that 36% will experience recovery (Lally et al., 2017). This is still a lower estimate than the report provides, but I am not sure whether this review was even available to the report authors when they prepared this section.
Fifth, the blog claims that “The authors ignore aetiological factors, including head injury, cannabis, and psychoses caused by general medical conditions, e.g. epilepsy, and autoimmune conditions. Missing an organic cause of psychosis constitutes a serious clinical error.”
Although the report does not discuss epilepsy or autoimmune conditions specifically, it is clear they are referring to people who have psychotic symptoms ‘not secondary to a general medical condition’. The idea that the role of cannabis or other drugs is not acknowledged is simply false. Here are some quotes from the report:
“Firstly, people who use a lot of cannabis appear to be more at risk of developing psychosis, 15 although it is not always easy to separate the effects of the drug from the circumstances that may have led people to seek solace in drug use in the first place…We can exercise caution with recreational drugs, even very commonplace drugs such as alcohol or cannabis.”
“Sam first heard distressing voices in her teens after being raped. She coped by using illegal drugs. She came to the attention of services after hitting the man who had raped her. She found hope through reading other people’s recovery stories, making sense of her own experiences and taking control of her life.”
“Biological factors can play their part, and there are clearly cases where they are important, for example when someone has a psychotic experience when they are physically ill or have taken particular drugs.”
“Drugs such as amphetamines, which increase dopamine production, can also produce psychotic-like experiences.”
“Sometimes – for example when we’ve drunk alcohol or taken drugs, or sometimes even when we haven’t – the way our brain is functioning can affect our judgement. But in each case, we are actively making sense of our world.”
“He had initially developed these experiences and beliefs after a prolonged period of heavy use of drugs and alcohol three years earlier.”
“In traditional clinical language, such difficulties have sometimes been referred to as ‘negative symptoms’. Sometimes they can be reactions to, or ways of coping with voices or paranoia. Sometimes they are related to prescribed or other drug.”
“Alcohol is unquestionably the most serious substance-related public health issue, but cannabis and other drugs have been associated with mental health problems in general and psychosis in particular. Over-use of recreational drugs appears to make it more likely that someone will experience a psychotic crisis.”
Sixth, the blog criticises the report for claiming only 20% of people experience a good response from antipsychotics. The authors gesture towards “caveats” provided by the authors who provided this meta-analytical evidence (Leucht et al., 2017). However 20% is actually an overestimate. Only around 9% of people in this meta-analysis had a good response that was due to the antipsychotics and not the effects of placebo or bias.
To address the report’s claim that effects for psychological treatments are comparable in size to antipsychotics, the blog authors then refer uncritically to their own meta-analysis of CBT for psychosis. Readers may be unaware one of the blog authors published this work, because it was not registered in the ‘conflicts of interest’ section. The reader may also be unaware that this review suffered from a number of methodological flaws, as highlighted in many letters published in the British Journal of Psychiatry afterwards. Other meta-analyses of this evidence are available, and largely contrast with the negative and highly critical conclusions of the meta-analysis provided by Dr Jauhar.
There are other problems with the Mental Elf critique of the Understanding Psychosis report. However the above is sufficient evidence that their critique is unreliable, and there is a distinct risk of patients and clinicians who trust the Mental Elf being misled by it.
As the anonymous writer has made vague claims about methodology in our paper (Jauhar et al 2014 http://bjp.rcpsych.org/content/204/1/20), I will make a brief reply.
First, debate and progress in science all is about opposing views ….it would be unscientific or even ‘anti-science’ to avoid debate. So we welcomed comments upon our paper – this was one of the key reasons why (unlike other meta-analyses published in this area) we published our primary data for interested readers to re-analyse as they wished (e.g excluding studies, including additional studies and re-examining how the effect size might change).
To return directly to the letters on our meta-analysis, we replied to each and showed that in each case the claims were unfounded (indeed, in some instances this could have been done by the authors themselves by referring to our freely available meta database). If the anonymous commentator has additional or specific outstanding points concerning our methodology, then please raise them here and I am very happy to reply.
Contrary to the claim, our findings do not essentially diverge from those of any other meta-analysis published in over a decade – any beneficial effect of CBT is ‘small’ on positive or total symptoms and reduces further in blind trials. For negative symptoms, CBT has no significant benefit (e,g. Velthorst et al 2014; Baandrup et al 2016; Jauhar et al 2014). As a related point, the claim in Understanding Psychosis concerning comparable effect sizes for CBT and the averaged effect of antipsychotics… this is – at best – an unacceptable misrepresentation of data.
Finally the anonymous commentator seems to misunderstand the nature of ‘conflict of interest’ – if writing upon an area in which you write is a conflict of interest, then we are reduced to absurdity; the authors of Understanding Psychosis would also undoubtedly have undeclared conflicts of interest; and indeed, by writing anonymously, the author has diligently avoided being open about any possible conflict of interest themselves.
I notice anonymous researcher chucked in an ad hominem about “unpleasant critics” of Understanding Psychosis
The author seems to ignore that unpleasant ad hominems have been made by some authors of the Understanding Psychosis towards people they disagree with
My original comment was never posted by Jauhar and Morrison, so I’d like to thank everyone who wrote comments that debunked their anti-Mad “review” of “Understanding Psychosis”. As a psychiatric survivor, that paper has helped me tremendously. It was geared for Mad people, not for clinicians. So, my comrades, DON’T let this review scam you out of seeking help from “Understanding Psychosis”. It doesn’t matter what psychiatrists think of that paper. All that matters is what YOU think of it.
Agreed. Everyone makes sense of their own experience if they can. I don’t need to be a professional to make sense of mine, although I can be swayed by what is written by others sometimes.
I’m wondering where comments are from people like myself who actually experiences what is often called ‘psychosis’. After all aren’t we the ones who would be a able to explain better than any professional what language is used or how we have made sense of our experiences.
I would like to see a paper written by people with lived experience only. I won’t give my own opinion as this would not be a balanced view as I can only talk about my own experiences.
I am fed up of professionals arguing and infighting about the experiences I ‘live’ with to be perfectly honest. I am more than happy to ask for others who experience ‘psychosis’ to put together an article which takes into account differing views and opinions.
Surely people like myself should be the ones who inform practice.
These comments from people with lived experience are very important.
We do not intend to prolong what has often been an unhelpful discussion about alleged misinterpretations of the evidence in this report. However, writing as two of the authors, we do wish to repeat a request which has been supported by a number of others, to amend or delete the factually incorrect summary statement: ‘This document gives theoretical views on what constitutes psychosis and what a group of influential senior psychologists think would be helpful for people who experience the phenomena they define.’ As is clearly stated in the report, one quarter of the authors (not all of whom are psychologists) have had personal experience of psychosis.This is a fact, not open to differences of opinion, and as such the error needs to be corrected. We are very unhappy that service user contributions and voices have been marginalised and silenced in this way. This act of omission is particularly ironic given the reviewers’ strong claim that the report excludes some service user perspectives. Equally ironic is the fact that the authors whose contributing role has been airbrushed out – as also happened in reviews of the 2014 version – have collectively experienced all the ‘bizarre delusions’, ‘negative symptoms’, ‘thought disorder’, ‘ipseity disturbance’ and alleged cognitive impairments that the report allegedly fails to consider, along with inpatient care and the message that they had serious lifelong ‘psychotic illnesses.’
We do not understand why this incorrect, misleading, and, from a service user perspective, marginalising and excluding statement has not been removed. We call upon Mental Elf and the reviewers to do so now.
Lucy Johnstone and Jacqui Dillon.
Hi, yes this is an error and I apologise unreservedly for any offence caused to service users. I am glad you have been able to put the record straight here. We do not moderate responses, and welcome debate relating to the blog.
So when will the mischaracterisation of the authorship be retracted and corrected?
Lucy and Jacqui…
Come, come!
What sort of debating style is this. To bring one’s own medical history to the table as objective evidence.
Surely one is not an expert in respiratory medicine,
for having gotten over the flu.
Recovery stories?
Great! celebrate! keep hope alive for families.
But surely, most would want to be seen (or have their loved ones seen) by an expert when things start to get really, really spooky. The expert has seen thousands of cases, in addition to any personal experience they may, or may not have suffered.
Let’s keep our personal selves out of it. Having had a migraine does not make one an authority in neurology. Case closed? Agreed? – agreed.
The reality is, a lot of our psychology pals are being forced into being CBTp machines by diktat.
Our psychology pals have so much more to offer – as sensitive, intelligent, creative, wise therapists.
Truth be known, many of them resent having their skills coerced into a treatment modality (CBTp), which can be very mechanical and (keep it quiet) isn’t that effective for major mental illness.
The CBTp merchants have taken steps to reduce any other psychotherapeutic approaches. Their assault on biological psychiatry is as nothing compared to their assault on other psychotherapies.
Reflect, think deeply.
P
We have no idea how this response relates to our request. We repeat: Your blog seriously misrepresents the authorship of the report and in doing so is dismissive and silencing of service user voices and contributions. Such a basic error, which you are apparently so reluctant to correct, is bound to cast doubt on the accuracy of your other assertions about the report as well. We ask you and your co-author to acknowledge your inaccuracy and retract your erroneous statement. Lucy Johnstone and Jacqui Dillon
Ok Lucy & Jacqui, I think I can see now.
It is the bit about the authorship being not just senior psychologists but service-users as well. Sorry.
I think Sameer (see above) was more switched on to this, and apologised. Same here, accept my sincere apologies for any offence caused.
Does the addition, “Another strength of this report was that service-users were involved in its writing” suffice? Or please can you change as you see fit. No worries. Andre could you update, thanks and check with Lucy/Jacqui.
With that sorted (hopefully), can we debate other issues again. (Sameer and I have surely demonstrated that we can change our minds, if an argument is persuasive, and issue an apology for having gotten it wrong).
I make a plea:
Can anyone show me a persuasive argument that, the young person who dropped out of the 6th form, now languishing in a back bedroom, with no friends, no interests, no emotion, no communication with family, disregard for their appearance, no ambition – and with whom the clinician endures the same long silences as the parents or doesn’t get beyond, “I’m fine, I don’t need help”.
has the same psychological condition as;
the young person, who trashes their room, cuts their wrists, gets into fights with their partner, feels depressed, takes overdoses, goes to A&E in crisis – but with whom the clinician can make a space to acknowledge the horrors that the person lived through in the past, by connecting with the healthier parts of the young, still developing personality.
I ask this question with 100% seriousness.
The report seems to be saying these two conditions are the same.
Colleagues of any school or background training, please show me how? Thanks.
Paul
Dr Morrison
Are you taking these issues seriously? You’re blog was replete with errors and false statements, but you seem unconcerned. May I remind you that as a medical Doctor, you have a responsibility to communicate honestly with the public? You are representing your profession here, and your continued failure to engage with the issues – or indeed correct your blog – is concerning.
Paul,
Your acknowledgement of the inaccuracies and subsequent apology are appreciated.
The correct wording to address the issue is this:
‘Input from service users who have collectively experienced the whole range of severe psychotic experiences is a main strength of the report. These authors include internationally respected trainers who have used non- medical interventions successfully with people experiencing an equally wide range of severe psychotic distress.’
Sincerely,
Dr Jacqui Dillon
Having re-read this piece by Sameer and Paul it’s impossible to avoid the fact that it’s a dishonest review. Here are a couple of examples:
1. They criticise the BPS report for comparing the risk of psychosis given childhood trauma to the risk of lung cancer given smoking, saying that, “It is mathematically impossible to explain how the factors they give could contribute to the prevalence they mention; the odds ratio for childhood trauma is between 2-4 in most meta-analyses….The odds ratio for smoking and lung cancer varies depending on smoking status and cell type, anywhere up to around 100….” What they omit to mention is that, for both types of exposure, there is a dose-response relationship so that, the more severe the exposure, the higher the risk. For example, in the US NCS the OR for psychosis given exposure to 5 different kinds of trauma was above 50 (Shevlin, Dorahy, & Adamson, 2007). A meta-analysis of the risk of squamous cell carcinoma given smoking found ORs rising from 3 to 33 for smoking between 1 and 40 years (Khuder, 2001), so in the same ball-park. Of course, Sameer and Paul might argue that few people smoke for only one year but, there again, adverse life experiences tend to cluster in disadvantaged families so children who experience one often experience others. It is also worth pointing out that the reported risk of psychosis given childhood trauma does not take into account other toxic childhood influences such as living in poverty (Wicks, Hjern, & Daman, 2010) or urban environments (Pedersen & Mortensen, 2001).
The important point is that the evidence on childhood trauma and psychosis meets recognized criteria for causality (ironically, drawn up in response to the observed association between smoking and cancer; Hill, 1965). The BPS report was right to draw attention to this association, which has been neglected by mainstream psychiatry until very recently, but which is very important to patients.
2. Sameer and Paul also criticize the BPS report for ignoring bipolar disorder, “which has differences in aetiology, natural history and treatment response to non-affective psychoses”. As others have pointed out, the BPS report actually points readers to a separate report on bipolar symptoms but the complaint is disingenuous in other ways.
As Sameer and Paul surely know, it has long been recognized that patients with a mixture of the two groups of symptoms are commonly encountered in psychiatric services and can be placed on a schizophrenia-bipolar spectrum, which has no clear boundaries (Keshavan et al., 2011); although it is true that outcomes tend to be less benign towards the ‘schizophrenia’ end of the spectrum, there is no clear distinction between the outcomes of patients with the two diagnoses (Kendell & Gourlay, 1970). As Sameer and Paul also surely know, the recent scientific literature is entirely inconsistent with their suggestion that the two hypothesized diagnostic entities have separate aetiologies; recent studies using behavioural (Lichtenstein et al., 2009) and molecular approaches (Owen, 2012) have demonstrated a shared genetic risk for the two diagnoses, and a recent meta-analysis has revealed that, as in the case of ‘schizophrenia’, childhood trauma is a potent risk factor for an adult diagnosis of bipolar disorder (Palmier-Claus, Berry, Bucci, Mansell, & Varese, 2016). Although cognitive impairment seems to be greater at the ‘schizophrenia’ end of the spectrum, this appears to be a difference in degree rather than kind (Tamminga et al., 2014).
Even if, for some reason, they do not know these things, what Sameer and Paul do know is that schizophrenia patients and bipolar patients have similar neurochemical abnormalities. Indeed, an excellent PET study, published by Sameer almost simultaneously with their review found that dopamine dysregulation was linked to the presence of psychotic symptoms in both bipolar and schizophrenia patients (Jauhar, Nour, & Veronese, 2017).
This last observation raises the interesting question of why Sameer and Paul would choose to ignore their own research findings in order to score a point in their critique of the BPS report? For some reason it is more important to them to trash a well-intentioned attempt to communicate a positive perspective on psychosis to the general public than to provide a balanced account of the evidence themselves. I leave it to others to judge the explanation for this, except to say it probably has something to do with professional partisanship. Whatever the reasons, Sameer and Paul have not written a serious review and it is difficult to believe they had the best interests of the public or services users in mind when they constructed their critique. For this reason, I see no purpose in debating with them beyond this point.
References
Hill, A. B. (1965). The environment and disease: Association or causation? Proceedings of the Royal Society for Medicine, 58, 295-300.
Jauhar, S., Nour, M. M., & Veronese, M. (2017). A test of the transdiagnostic dopamine hypothesis of psychosis using Positron Emission Tomographic Imaging in bipolar affective disorder and schizophrenia. JAMA psychiatry. doi:10.1001/jamapsychiatry.2017.2943
Kendell, R. E., & Gourlay, J. A. (1970). The clinical distinction between the affective psychoses and schizophrenia. British Journal of Psychiatry, 117, 261-266.
Keshavan, M. S., Morris, D. W., Sweeney, J. A., Pearlson, G., Thanker, G., Seidman, L. J., . . . Tamminga, C. A. (2011). A dimensional approach to the psychosis spectrum between bipolar disorder and schizophrenia: The Schizo-Bipolar Scale. Schizophrenia Bulletin, 133, 250-254.
Khuder, S. A. (2001). Effects of cigarette smoking on major histological types of lung cancer: A meta-analysis. Lung Cancer, 31, 139-148.
Lichtenstein, P., Yip, B. H., Bjork, C., Pawitan, Y., Cannon, T. D., Sullivan, P. F., & Hultman, C. M. (2009). Common genetic determinants of schizophrenia and bipolar disorder in Swedish families: a population-based study. Lancet, 373, 234-239.
Owen, M. J. (2012). Implications of genetic findings for understanding schizophrenia. Schizophrenia Bulletin, 38(5), 904-907. doi:10.1093/schbul/sbs103
Palmier-Claus, J. E., Berry, K., Bucci, S., Mansell, W., & Varese, F. (2016). Relationship between childhood adversity and bipolar affective disorder: systematic review and meta-analysis. British Journal of Psychiatry. doi:10.1192/bjp.bp.115.179655
Pedersen, C. B., & Mortensen, P. B. (2001). Evidence of a dose-response relationship between urbanicity during upbringing and schizophrenia risk. Archives of General Psychiatry, 58, 1039-1046.
Shevlin, M., Dorahy, M. J., & Adamson, G. (2007). Trauma and psychosis: An analysis of the National Comorbidity Survey American Journal of Psychiatry, 164, 166-169.
Tamminga, C. A., Pearlson, G., Keshavan, M., Sweeney, J., Clementz, B., & Thaker, G. (2014). Bipolar and Schizophrenia Network for Intermediate Phenotypes: Outcomes across the psychosis continuum. Schizophrenia Bulletin, 40 suppl 2, S131-S137. doi:10.1093/schbul/sbt179
Wicks, S., Hjern, A., & Daman, C. (2010). Social risk or genetic liability for psychosis? A study of children born in Sweden and reared by adoptive parents. American Journal of Psychiatry, 167, 1240-1246.
Ach, that’s a pity Richard. Think again.
I hoped you would stick around, and we could take these discussions way higher. A paradigm shift is needed – I’m sure we agree on that.
And I hoped that we could move beyond stats. Heaven forbid that the mind can be explained by p-values.
Childhood trauma:
Oh yes. Adverse early environments are bad for the psyche in later life; self-evident. The animal studies, in which extraneous variables can be controlled, show that stress (removal from mum, being in a tight situation with a dominant animal) exert long-term detrimental effects on the mind/brain, which can manifest in later life.
And it is obvious that childhood/adolescent trauma can cause psychological problems; self-evident. We see alcohol, drugs, eating-disorder, mood-swings, cutting, poor self-esteem, flashbacks, voices, anger, toxic relationships, splitting, dissociation, depression, guilt, sexual problems, phobia, paranoia, cognitive distortions, aggression, anxiety, acting-out, identity-confusion, projection, panic, para-suicide….and so forth. I’m going to be asking my psychology (or psychoanalytic) colleagues to see if they can help this person by talking to them, fairly early on. Bottom line, I need their expertise.
Different beasts:
Madness is a different beast. Here I am deliberately using the term (madness), which became standard terminology in 1960s anti-psychiatry, but may now be pejorative, I don’t know. We see acute, florid forms, in which the personality remains intact, cognition also. In 20 years of trying I have never been able to talk a person out of this state (can anyone?) – so it has to be the prescription pad as a first-line. Things usually resolve within 24 hours, low dose as well. But, thank goodness it was just a little “puff of madness”, not the real thing, however wild and frightening at the time. And we can talk again and marvel at the terrific power of the mind.
The real thing?
Well, we should take out mania as well. Impossible to talk down, and that awful feeling that the patient is sharper than you, usually true. But the meds work fast, 4 days for lithium, 6-24 hours for, that quite awfully-termed class, the anti-psychotics. Apparently it used to take months, before the meds were around. All stable? great, we can have a proper conversation now, and figure out how to reduce the chances of all that happening again, if you want.
But the real thing?
Thankfully we don’t see it so often in early intervention services. The inexperienced sometimes label it as autism, and yes, it can be hard to define. That’s because it involves a loss – a loss of the former personality. The loss encompasses; motivation, ambition, emotion, conversation, interests, family-life, friendships, romantic relationships and intellectual-life.
In terms of brain science, it is an impoverished ability to embody (select and initiate) psychomotor and emotional programmes.
Lived out in back bedrooms, easy for services to ignore. No voice. No complaints. No risk. No narrative. Usually no striking life event or trauma, certainly not always, although sometimes a catastrophic decline in high school or college.
Here, talking is painfully difficult; expect long silences. Unless one is an RD Laing type, therapy can’t even get off the ground. Of course we all try and keep trying. Aut the dopamine blockers don’t really work that well here either.
Only one therapy has a chance to bring the personality back, clozapine. And when it works, it is astonishing – a penicillin-like effect. It doesn’t block dopamine, to any great extent. Indeed, nobody knows how it works – which is a bit embarrassing for the field.
But the parents are so thankful to see the spark return, they don’t care how it works. And at last, my psychology pals can do their thing, and gently guide the person back to their former self.
Collaborative working. As clinicians we know our patch, we don’t need nice guidelines to tell us how to do our jobs.
As someone who ran the Russian roulette of have I still got an immune system with plastic covers on my pillows for 17 years I would dispute that clozapine which even the manufacturers say works in just 30% of cases is like penicillin. Does penicillin destroy the immune system? Does penicillin make you sell concious, drooling onto pillows or down you top of you happen to fall asleep in a chair? I was titrated off clozapine it took 3 years. I took my last half tablet over 3 years ago. The pains I got in my head as a result of the withdrawal stopped 2 years ago. But Clozipine is like penicillin it’s just psychiatrists don’t actually know how this potentially very dangerous drug works and the poor victim of this drug is on it for life in the majority of cases.
You do however mention a treatment that works but only if the psychiatrist is a RD Liang type. From this it’s hard to draw any conclusion that isn’t the psychiatrist has decided due to person prejudice to withhold a non toxic treatment in preference to a drug treatment that carrys potentially fatal results.
You know Paul, as a former clozapine taker/addict by proxy and having had many friends Dx with schizophrenia who died via suicide citing at times former treatments, that prejudice hurts.
I would like to thank Professor Bentall for his considered comments, and will answer his points, as they relate to evidence, and our blog.
1. He has quoted a study (1), stating it shows a dose response relationship between cumulative traumatic events and psychosis. This study used the CIDI to define psychosis, and as we pointed out in the review (and gave references for), this screening measure does not correlate well with conventional diagnostic instruments, with a positive predictive value of 0.2 and specificity of 0.6 (2). In fact, the reference we gave used the same survey that Professor Bentall cites, the NCS (3). As we stated in the blog, there is limited evidence to suggest these screening measures measure what we would conventionally diagnose as psychotic illness. This was one of the points of the blog.
In terms of the Bradford Hill criteria for causality, I used this in a meta-analysis of smoking and risk of psychosis, and would be exceptionally cautious about using this line of reasoning to equate this risk to that of smoking and lung cancer (4). The evidence for meeting the Bradford Hill criteria for smoking and lung cancer are strong. As far as I can see there is not the reciprocal degree of evidence for childhood trauma and psychosis to justify Professor Bentall’s assertions.
I would happily retract the comment on smoking and lung cancer if there was an equivalent body of evidence to suggest that childhood trauma was linked, with the same order of magnitude, to psychotic illness (diagnosed using a diagnostic and conventional interview, such as the SCID).
2. We did look at the document on bipolar disorder, though did not find any significant mention of bipolar psychosis within it. We did think bipolar psychosis is a specific entity within the spectrum of psychoses, and merits being thought of as such, regarding measures such as outcome and treatment-which differ from other forms of bipolar illness. I apologise if we did not make this clear- we would encourage interested readers to read the Bipolar document and make up their own mind.
3. Professor Bentall makes the point about no significant difference in outcome between bipolar illness and schizophrenia, citing Robert Kendell’s 1970 paper, which found no difference when using Discriminant function analysis (DFA) (5), though appears to have missed Kendell’s follow up of this very same cohort, which did find a difference, using DFA and taking into account follow-up data that included ourcome (6), as well as other studies that have found the same (7), and the study we cite in the blog (8).
We would like to reassure Professor Bentall that we think we are conversant with the literature that he cites (or try to be). There are indeed shared genes between the two diagnostic constructs, though the rules of statistics apply as much here as for risk factors and psychosis. The orders of magnitude for these genes and their effects are small, and though some are shared, that is not the case for all-for example a lot of the 108 associated loci picked up in the 2014 GWAS study in schizophrenia, published in Nature (9) have not been identified in bipolar illness (to the best of my limited genetics knowledge). Furthermore, the neurodevelopmental trajectories of the two constructs differ (10), and genetic abnormalities of neurodevelopment may be shared between schizophrenia and autism, though not bipolar illness (11).
A full discussion of the distinction and aetiological factors is beyond a blog, but, from the evidence cited by Professor Bentall and myself, neither side can legitimately argue one way or the other-as ever in psychiatry, things are not so clear.
Lastly, I would like to thank Professor Bentall for his comments in regard to our recent PET study. This showed, in people presenting with their first episode of psychosis, that dopamine synthesis capacity was associated with positive psychotic symptoms, regardless of diagnostic class. In other words, dopamine synthesis capacity explained around a quarter of the variance in positive psychotic symptoms. Whilst I am gratified that Professor Bentall enjoyed this paper, I am not sure how this goes against anything we said. We stated that positive psychotic symptoms are not particularly good in distinguishing between what we consider to be different classes of psychotic illness, and we quoted Van Os and Murray in the blog, regarding this.
It is also worth noting that in the PET study we found a difference in negative symptoms in people presenting with what was diagnosed as bipolar illness and schizophrenia (12). It is also worth acknowledging the results of a PET study that failed to find a difference in dopamine synthesis capacity in healthy people who were experiencing auditory hallucinations (ie would not meet diagnostic criteria for psychosis) and volunteers (13). I acknowledge caveats regarding all these studies, and they require replication.
In writing this blog we wished to draw attention to factual errors that we thought exist in the document, and cite references that would let interested readers make up their own minds as to whether they agree with us or not.
I do not understand how this has been construed as disingenuous, and hope that, by quoting the literature, interested readers and the general public make up their own minds-in regard to the document itself and our blog.
I would add that we both work as NHS Consultant Psychiatrists with people with psychosis, and sincerely hope that the blog would not have a detrimental effect on the people we provide care for. Furthermore, we work with Psychology colleagues and consider their input, as well as nursing and occupational therapy colleagues, to be vital to ensure optimal care for our patients.
References
1. Shevlin M, Dorahy MJ, Adamson G. Trauma and psychosis: an analysis of the National Comorbidity Survey. Am J Psychiatry. 2007 Jan;164(1):166–9.
2. Jauhar S, Lawrie SM. Are these results clinically relevant? BMJ. 2011;342.
3. Kendler KS, Gallagher TJ, Abelson JM, Kessler RC. Lifetime prevalence, demographic risk factors, and diagnostic validity of nonaffective psychosis as assessed in a US community sample: the National Comorbidity Survey. Archives of General Psychiatry. 1996;53(11):1022.
4. Gurillo P, Jauhar S, Murray RM, MacCabe JH. Does tobacco use cause psychosis? Systematic review and meta-analysis. The Lancet Psychiatry. 2015;2(8):718–725.
5. Kendell RE, Gourlay J. The Clinical Distinction between the Affective Psychoses and Schizophrenia. BJP. 1970 Sep 1;117(538):261–6.
6. Brockington IF, Kendell RE, Wainwright S, Hillier VF, Walker J. The distinction between the affective psychoses and schizophrenia. BJP. 1979 Sep 1;135(3):243–8.
7. Johnstone EC, Frith CD, Crow TJ, Owens DGC, Done DJ, Baldwin EJ, et al. The Northwick Park ‘Functional’ Psychosis Study: Diagnosis and Outcome. Psychological Medicine. 1992;22(02):331–46.
8. Chang WC, Lau ESK, Chiu SS, Hui CLM, Chan SKW, Lee EHM, et al. Three-year clinical and functional outcome comparison between first-episode mania with psychotic features and first-episode schizophrenia. Journal of Affective Disorders. 2016 Aug;200:1–5.
9. Schizophrenia Working Group of the Psychiatric Genomics Consortium. Biological insights from 108 schizophrenia-associated genetic loci. Nature. 2014 Jul 24;511(7510):421–7.
10. Payá B, Rodríguez-Sánchez JM, Otero S, Muñoz P, Castro-Fornieles J, Parellada M, et al. Premorbid impairments in early-onset psychosis: Differences between patients with schizophrenia and bipolar disorder. Schizophrenia Research. 2013 May 1;146(1):103–10.
11. Carroll LS, Owen MJ. Genetic overlap between autism, schizophrenia and bipolar disorder. Genome Medicine. 2009 Oct 30;1:102.
12. Jauhar S, Nour MM, Veronese M, Rogdaki M, Bonoldi I, Azis M, et al. A Test of the Transdiagnostic Dopamine Hypothesis of Psychosis Using Positron Emission Tomographic Imaging in Bipolar Affective Disorder and Schizophrenia. JAMA Psychiatry [Internet]. 2017 Oct 11 [cited 2017 Oct 12]; Available from: https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2656683
13. Howes OD, Shotbolt P, Bloomfield M, Daalman K, Demjaha A, Diederen KMJ, et al. Dopaminergic Function in the Psychosis Spectrum: An [18F]-DOPA Imaging Study in Healthy Individuals With Auditory Hallucinations. Schizophr Bull. 2013 Jul;39(4):807–14.
Thanks for the invitation to comment Paul. I had hesitated from commenting before because- 1. Psychosis is not my main area of empirical work. 2. When I worked in EIP I saw multiple aetiological pathways (trauma, drug induced, and occasionally something that appeared more organic and harder to understand psychologically) into psychosis that has left me unwilling to take too strong a position either way. 3. Do we really need another privileged male academic/clinician in this discussion? However Paul’s request came from a terse twitter exchange which he seemed hurt by so I wanted to take him at his word and write a reflective response. It is noteworthy that what I write here comes from a position of both someone with an experience of psychosis as well as an academic/clinician (for those interested in this dual role my first paper on the subject can be accessed here http://www.bps.org.uk/system/files/Public%20files/DCP/EbE%20CSA.pdf). This multiple position explains in part my critical response to Paul’s suggestion that maybe medical treatment should be left to people with expertise and not those ‘who are lying in the bed next to me.’ This is what I want to reflect on for Paul and others. For me there is much to be learnt from the insights of people with lived experience. While research has typically shunned ‘I’ statements with some good reason, I think with any complex social problem we need a plurality of epistemologies to triangulate our knowledge. This includes an objective positivism sure but also requires what Peter Beresford refers to as ‘experiential knowledge’. While the proximity and emotional attachment to the subject has been historically cautioned against in research, he argues convincingly that in many ways our closeness to the subject of psychosis makes us key informants. For me as a scientist and survivor, the most impressive feature of the BPS report, which is entirely unacknowledged in this blog, is the prominence of experts by experience as not only sources of data but actually as co-authors in their own right. This adds a layer of methodological sophistication alongside an ‘epistemic justice’ to the report that is simply absent from most psychosis research and theorising. So for those wishing to critique the BPS report fine, but what I invite you to reflect on is how you plan to include similarly experiential knowledge forms in your research. And if you think that the methodology doesn’t fit then I invite you to think what this says about the appropriateness of a methodology that has no room for ‘I’ in it given that the ‘I’ is also caught up intrinsically with the very object of study i.e. the person’s ‘mind’. For while I agree with Paul that there are many overlaps between physical and mental health (the psychosocial risk factors of coronary illness and psychosis being a good example) what is distinct is that the object of study in psychosis is often some aspect of ‘mind’ and that while we are studying it, there is a person looking back out at us making sense of what we are doing. It is a great waste of resources to not include their expertise as co-researchers.
Very interesting paper Danny,
and beautifully written.
Not often I see Kant cited!
P
I understood that the new wording was going to be checked with me. It has not been. Your amendment, while welcome, does not sufficiently acknowledge the expertise of the SU co-authors or make full amends for the earlier false statement. Please would you demonstrate your commitment to respecting and including SU voices by negotiating the wording with me as promised.
Of course Jacqui.
Let’s find a position.
About 4 comments above this you expressed,
quite elegantly…
“The correct wording to address the issue is this: Input from service users who have collectively experienced the whole range of severe psychotic experiences is a main strength of the report. These authors include internationally respected trainers who have used non-medical interventions successfully with people experiencing an equally wide range of severe psychotic distress.”
Am I permitted to debate some of it? Can we have a Socratic dialogue?
Unconditional positive regard.
P
This is the sequence of events so far.
1. Mental Elf (as with the original report) does not ask any SUs to review it, despite the fact that they are the main intended audience.
2. The two psychiatrist reviewers make a false statement about the authorship of the report, thus marginalising and excluding the voices of one quarter of contributors who have had personal experience of psychosis.
3. At least half a dozen requests to amend or retract this false statement are ignored.
4. Reviewer SJ finally offers an apology, but no change is made to the blog itself, or to yet more requests asking for this to be done.
5. Reviewer PM posts a long comment evading the question and strongly implying that service users have nothing to offer to the treatment debate anyway.
6. PM finally acknowledges the reviewers’ false statement and invites two of the contributors to suggest an appropriate re-wording.
7. One of the service user contributors (JD) suggests a form of re-wording.
8. This is ignored, and Mental Elf posts a minimal change of wording with no apology.
9. JD points out that her voice has once again not been taken into account and the promised negotiation about wording has not happened.
Do we need to point out how appalling this whole process has been?
We are bound to ask: How could the reviewers (and Andre Tomlin) have made so basic, serious and offensive an error in the first place? Were they trying to support another obviously false statement, that the report describes an essentially non-clinical population? And in the circumstances, can we trust anything else they have said about the report?
JD has no intention of engaging in a long public ‘Socratic dialogue’ about the exact form of wording. She suggests that Andre Tomlin contacts her directly so that the matter can be resolved as soon as possible.
Jacqui Dillon and Lucy Johnstone
Sorry folks.
I had only asked if I was being permitted to talk. To be heard. To have a voice. To communicate. To express – not as a label, like ‘doctor or psychologist or clinician’ – but just as a human.
Obviously not!
But, is that not at odds with your, very laudable, principle that all voices deserve to be heard?
Isn’t there a logical inconsistency at the very heart of your own argument?
Come on! Reconsider. Come and debate, no labels, no pre-conceptions. All are welcome to talk surely?
P
Can anyone see me? Am I invisible? Why is it that I seem to be completely left out of this debate? This is the point I was making earlier. It’s people like me who are under MH services that I think should be involved in writing what we think. I take in board that professionals and people with lived experience have contributed to the articles but I wonder if there are any articles published solely by people in MH services suffering from what you term ‘psychosis’? Would be great if someone could reply.
Yes, I can see you. Maybe, just a suggestion, because I am not taking part in the match for the trophy of who is (absolutely and for ever and ever) right. I will not offer more comment on this, as they are likely to be too ‘controversial’.
I am not aware of academic/research papers authored solely by people suffering from what is termed ‘psychosis’. There are a number of reasons for it, but the one I would suggest is that academic writing involves a particular set of writing skills and practices. They are not mysterious or secret, nor particularly difficult to master, still but they are peculiar enough that it takes some learning and practice to be able to produce a text that will be acceptable to gate-keepers of academic writing.
But just because I am not aware, doesn’t mean they are not there.
You seem to be implying that people who experience altered states are do not have the skills to write an academic piece! I find this very offensive as I myself do have these skills when not acutely ‘psychotic’. Why does an acedemic piece need to be written in a certain way anyway? Furthermore, people like myself should be allowed to have academic papers published however we write them. This is the very essence of why people such as myself are left out of important work to ‘educate’ professionals. Please can you reply.
Hi, I really enjoyed your piece.
Blogs like this will be read by more people than an article in a formal journal. The majority of academic papers are hardly read at all, so you are already talking to a wider audience.
Of course for a young researcher, it is a real thrill seeing your name on a paper. Your name will be in the middle of a list of names, (the prestige slots are the 1st and last author) but it is still great. And then it can get a bit competitive. Fights over who gets to be the first author and so forth.
Sometimes the really junior staff, don’t even make it onto the list of names on the front page. Instead they find their name in the acknowledgements – a tiny section, in a tiny font just before the references. It doesn’t quite look so good on the cv, or for showing to your pals and family. Not quite so thrilling. Actually, quite irrelevant. Thanks for being there.
And here’s a thing…
Sameer and I took a well-deserved series of thrashings (see above) for a mistake about not realising that service-users were co-authors in the Understanding Psychosis document from the British Psychological Society (BPS).
https://www.bps.org.uk/system/files/user-files/Division%20of%20Clinical%20Psychology/public/CAT-1657.pdf
So I went back to the document to look. There are really lively sections, in inverted commas. I liked these sections first time around. They sounded authentic and natural. Snippets from Graham, Rachel, Amber, Laura Lea, Henry, and many others. These were the patient experiences, the service user voices that Sameer and I failed to mention.
But do you know, I couldn’t see Graham or Rachel or any of these names on the front page, in amongst all the professors and consultants. If Graham, Rachel, Amber, Laura Lea, Henry and the others were authors, why were they not on the front page? Are they lesser authors, or junior authors? Why are they not given the full status of the academics?
Ok I thought, maybe they are acknowledged at the end. There is a section called, About the contributors. Again no mention of Rachel and the others. Just more details about the consultants and professors of psychology.
Two days ago, Dr Dillon wrote that Sameer and I “did not sufficiently acknowledge the expertise of the service user co-authors”. The Understanding Psychosis document seems to be doing the exact same thing.
Feelings:
I actually feel quite saddened by this.
Looks like it is still all about power.
I’m actually hoping I’ve made a mistake in my reading of it.
Hello Paul,
Yes you have misunderstood. The co-authors with expertise by experience are all listed at the front in the list of 25 co-authors. They were fully involved in the process of drafting and editing. Some had been diagnosed with schizophrenia and had been in receipt of services for many years. Some are professionals or academics too. As you know these things are not mutually exclusive: indeed the rate of mental health problems is higher than average among mental health workers. The people who gave us permission to use quotes from them were of course contributors in a sense too, but the one quarter refers to the 25 co-authors as listed. There are quotes from some of them too, for example Laura Lea and Eleanor Longden. I hope this clarifies things.
Your fears can be put at rest, Paul. You have indeed made a mistake in your reading of it. Several, in fact. Repeatedly.
But specifically with respect to the contributors, I’m not sure whether to be amused or angered by the fact that you have completely missed the point that the contributors are listed on inside cover / page 2 of the report, and some of those contributors have personal experience of psychosis. There are indeed professors and consultants, people with doctorates and some without. The contributors are listed conventionally. There aren’t additional, special, ‘service user’ contributors listed only by their first names or with pseudonyms. The point is, and it’s pretty simple… many of those consultants, Drs, professors, have personal experience of psychosis. You know what… we’re just like everybody else.
It would indeed be “all about power” if the people with the diagnosis were specially labelled, referred to only by their first names, denied their professional and academic qualifications, segregated into a different section of the list of contributors. We didn’t do that. Nevertheless… many of the contributors had and have personal experience of psychosis.
All contributors – experts by profession, experts by learning, experts by qualification and experts by experience – were acknowledged. They are all given full, and equal, status. I find it sad that this relatively simple point isn’t recognised.
I’m very sorry that this is how I was understood. The point I made was that academic writing pertains to a particular community of practice and if you’re not part of that community it’s difficult to partake in such writing.
I certainly didn’t want to, and I am fairly certain I didn’t imply that people with a spectrum of experiences cannot become part of that community. Of course, they can and many do. There are many academics who both write about their ‘mental illness’ (I understand that this phrase is contested and that’s why I put it in quotes) both as experts by experience and, indeed, as researchers.
As much as I hope I made my intention clear as to what I wrote, I accept that texts are received and I am sorry that I didn’t make what I wrote clearer.
Thanks for the explanation
Hello and thank you for your interest in our report. Yes there is lots written by people who have experienced psychosis. Some but not all of them are academics as well. See the final section of ‘Understanding Psychosis’ called ‘Useful Books and Websites’: pp 118 to 119 are ‘First Person Accounts and Service User/Survivor Websites and pp 126 to 127 are books written by people who have experienced psychosis.
Thank you Anne. I wonder if these accounts are given as much validation as the views of those which are co-written with ‘service users/survivors’ and professionals who have not experierenced ‘psychosis’?
Indeed. Our report tried to redress the balance a little. I am excited in this regard about the increasing involvement of people who have experienced psychosis as researchers, and about the advent of ‘mad studies’: https://www.theguardian.com/society/2014/oct/07/mad-studies-voice-of-sanity-psychiatry
Given that I wrote one comment, I will write another one. It’s a minor issue, but an irritating one.
Your claim that linguists can make a point about neurology is a strange one. Though there are plenty of linguists who look at the brain, I doubt very much they make claim about a ‘thought disorder’. You must understand very little about language to make a claim about thinking on its basis (as many psy-people do). In fact, in a little project I did, there were no psychiatrists who, like Prof Bentall, decided that ‘thought disorder’ is a misnomer and were in fact confident that thinking can be ascertained on the basis of speaking. Yes, if you speak slowly, you apparently think slowly.
In addition – given that you make a reference to that book – I think it’s important to understand that any claims about ‘language in schizophrenia’ or ‘schizophrenic language’, regardless of what you think about schizophrenia itself (I don’t feel qualified to comment, I’m also too old to think there is an easy and simple answer), is very suspect. It is very unlikely that a set of experiences will create a whole ‘language’, whatever it might mean.
People with a diagnosis of schizophrenia speak, they might even speak in a particular way, but making a claim that it’s because of schizophrenia is a leap of faith that even Indiana Jones would be too hesitant to make. Alas, there is some research that suggests that ‘schizophrenic language’ is full of mistakes, logical errors etc., yet there there is no evidence at all that somehow the participants lost their ability to speak in a wonderfully correct and proper way.
And so, I would urge the authors and, indeed, the readers, to take the language claims about schizophrenia with a bucket of salt.
Check out @mjac1985’s Tweet: https://twitter.com/mjac1985/status/926590186632499200?s=09
President of the RC of psychiatrists, one day we will find the same voice!
I hope we will find the same language too. Cheers.
Just to say that Peter Kinderman and I have written a response to Sameer and Paul’s blog: https://thecookehut.wordpress.com/2017/11/09/understanding-psychosis-and-schizophrenia-a-response-to-jauhar-and-morrison/
A repeated assertion in by the authors of Understanding psychosis and Schizophrenia (UPS) requires some comment – it is the ‘parity’ claim i.e. that “On average, people gain around as much benefit from CBT as they do from taking psychiatric medication”
The position on evidence is quite simple and the authors …and especially BPS …need to seriously reflect on the reality of the existing data and correct this misleading assertion – this false claim undermines the UPS authors as scientists and practitioners, it is clearly not in the best interests of service-users and it casts the BPS in a poor light
In their response to this blog (see https://thecookehut.wordpress.com/2017/11/09/understanding-psychosis-and-schizophrenia-a-response-to-jauhar-and-morrison/ ) Cooke and Kinderman state that “Peter has published a detailed explanation of the comparison between the effectiveness of CBT and antipsychotic medication elsewhere (Kinderman, McKenna & Laws, 2015). Briefly here we note that Sameer and Paul cite only one meta-analysis of CBT for psychosis, namely one authored by Sameer. Other meta-analyses have drawn different conclusions (see Wykes, 2014).”
The cited reference to Kinderman, McKenna & Laws (2015) is here to read http://onlinelibrary.wiley.com/doi/10.1002/pnp.365/pdf
In this debate between Professor Kinderman, myself and Professor McKenna, Kindrman references a recent antipsychotic medication meta-analysis by Leucht and colleagues, we explained why his response was irrelevant and that -even if it were relevant – it would contradict his and the UPS argument about parity of CBT and medication effect sizes. Please note that the reference to Wykes provides neither a meta-analysis nor empirical support for the claim but is an invited editorial…as an aside , Kinderman and Cooke fail to reference our response to Wykes’ editorial piece- but it may be read here http://ebmh.bmj.com/content/17/3/67.responses – and outlines evidential problems with the position Wykes presents in that invited piece
But to return to the key point regarding the claim about effect size parity between medication and CBT
First, not one trial has ever compared the efficacy of CBT versus any form of (antipsychotic) medication – so, we might ask….why are we even discussing this issue…the ‘parity’ claim is not based on ‘good evidence’ or ‘poor evidence’…it’s based on ‘no evidence’!
Second, even if –like Kinderman and UPS – we wanted to compare meta-analyses for CBT and meta-analyses for medication, which is an extremely dubious (methodological) enterprise anyway given basic design and meta-analysis differences across CBT and medication domains – it still would not support the ‘parity’ claim. The effect size for medication (from Leucht et al) – as referenced by Kinderman shows that in blinded assessment trials, medication effect sizes ranged from 0.88 for clozapine down to 0.33 for Iloperidon: (clozapine 0·88, amisulpride 0·66, olanzapine 0·59, risperidone 0·56, paliperidone 0·50, zotepine 0·49, haloperidol 0·45, quetiapine 0·44, aripiprazole 0·43, sertindole 0·39, ziprasidone 0·39, chlorpromazine 0·38, asenapine 0·38, lurasidone 0·33, and iloperidone 0·33).
How does CBT fare by comparison – well, UPS has a selective, curious and outdated series of citations on this issue – Pfammatter et al (2006); Wykes, et al (2008). Turner, D.T., et al(2014,). National Institute for Health and Care Excellence (2014). Correll, C.U. & Carbon, M. (2014) and Burns, et al (2014).
Pfammater et al is not a meta-analysis but an outdated overview referencing pre 2006 meta analyses. Wykes et al is also now nearly a decade out-of-date and so does not incorporate any of the many new better controlled RCTs (which are overwhelmingly showing no significant benefit of CBT)
The citation of NICE relates to meta-analyses that have not been updated since 2008 – indeed, more RCTs have been published since NICE did their last CBT meta-analysis than are actually included in that analysis…so this recommendation is woefully (and needlessly) outdated both for patients and for clinicians
They also vite Correll & Carbon, which again is not a meta-analysis, but a commentary on a meta-analysis and the only relevant data in that meta-analysis shows that medication is significantly more efficacious than pschotherapy!
So, we are left with Burns et al, which –calculated the effect size in a very different manner from every other published meta-analysis – they looked at pre-post change differences in just 12 trials rather than end of trial differences. More importantly perhaps, they contravened their own inclusion criteria by including a non-randomised trial – which happened to produce by far the largest effect size in the small number of trials they examined in medication resistant individuals and around a third of the trials were non-blind
Meta analyses that the ups authors failed to reference include our own – Jauhar et al 2014 with an effect size of 0.15 (blinded assessment)- and clearly UPS have an issue with Jauhar et al (having spuriously cited it as evidence for parity in the first edition and removing all reference to it in the latest edition); nonetheless, others exist such as Turner et al (2014) who produced an effect size of 0.12 (for trials not at high risk of bias); Velthorst et al (2014) found no benefit for negative symptoms in 30 trials 0.09
Third, in the one trial where individuals who were not taking medication (by choice) but were randomly assigned to receive CBT or no intervention at all (i.e. nothing) by Morrison et al (2014), the CBT group were no significantly different from the controls at the end of the 9 month trial…so in a trial where people received CBT and no medication, their outcome was no better than those randomly assigned to receive nothing whatsoever!
Given no evidence exists or could be rallied for the ‘Parity’ claim, how and where did it emerge?
Well, it first appeared in the 2014 paper by Morrison et al just mentioned — where they claim that “the size [of CBT] on psychiatric symptoms in our study is similar to the median effect size reported for overall symptoms in a large meta-analysis of 15 antipsychotic drugs vs. placebo” Morrison et al Lancet Feb 2014
Now, Professor Morrison is also an author on Understanding Psychosis…but more importantly, he later clarified the situation by clearly stating “It’s not a definitive trial, and we can’t say anything about how effective CBT is in comparison to antipsychotic medication.” Morrison in CQ Researcher Dec 2014
So, even a co-author of Understanding psychosis recognises that the claim is untenable and unevidenced
Again, I would call upon the British Psychological Society (BPS) to carefully check and verify this claim, which is made with their endorsement…and as clinicians and researchers, the Understanding Psychosis authors should reconsider what they have written and amend it to accurately reflect the existing evidence…as it exists…rather than as they wished it were
We are grateful to Professor Kinderman and Dr Cooke for responding to our blog. In retrospect, we should have acknowledged not only the survivors and those with lived experience who contributed (this was a mistake, as we did not understand this from the author list), and the tone of the document. It espouses holistic treatment and emphasises collaborative decision-making-ideals that we would wholly support.
However, our reason for writing the blog was our assertion that there are factual errors permeating throughout the document.
We hope that Professor Kinderman and Dr Cooke stay with the scientific debate here as it develops.
We will address the points raised, in order. Our comments are in bold.
1. Definition and nature of psychosis
Professor Kinderman & Dr Cooke state:
“Here the argument seems to be that we are not talking about ‘real schizophrenics’. Sameer and Paul are right – one of the messages of the document is that there is no underlying ‘thing’ or disease called schizophrenia that causes these experiences; these are just labels we give to particular experiences which some of us have more of, or experience more frequently or intensely than others. So it is not a question of separating out ‘real schizophrenia’. This is a concept which many people, immersed in the traditional idea of mental illness, find it hard to understand. For example, workers sometimes say to us: ‘Come to the ward where I work and I’ll show you schizophrenia exists’. We have each worked on both acute and long-stay mental health wards, and are only too aware that some people have multiple complex and severe problems and need ongoing help and support. The difference is that for reasons outlined in the report, we do not think that it is scientifically or ethically justified to insist that those problems are ‘positive and negative symptoms’ of a mental illness called schizophrenia. It is, of course, true that people in receipt of different forms of care (or none) are likely to have different problems, but this is not the same as assuming that conventional criteria define an underlying illness entity distinguishable from normality. One of the central theses of the report is that these conventional lines of demarcation do not necessarily reflect valid ‘natural forms’. It is a thesis with which Sameer and Paul, by merely repeating these definitions, do not really engage.
That said, we disagree with their argument that the report refers to a different population to those seen within current services. Indeed, there has been an overwhelming response from current and former service users who feel that the report speaks to precisely the problems they have experienced. Some of the report’s authors had themselves been in receipt of mental health services for long periods and had been diagnosed with schizophrenia.
Sameer and Paul now respond:
We do not recognise the term “real schizophrenics”, and would hopefully not define a person by the illness that they have, or are thought to suffer from-we accept that historically this has happened within Medicine.
We acknowledge a difference of opinion regarding the concept of mental illness. Irrespective of whether one believes the construct to have validity there is little doubt that a significant number of people whose illness/problems fulfil this construct have significant disability, as defined by the WHO (1).
Throughout the Understanding Psychosis (UP) document, references are made to psychotic experiences. A key point is that the authors cite research that has used self-report/ screening questionnaires to measure how common psychosis is in the population.
But – there is a significant discrepancy between what is picked up on self-report, screening questionnaires and what is picked up on a detailed phenomenological interview.
Consider the following:
Screening questionnaires and a phenomenological, structured interview do not identify similar phenomena. We cited references for this in the blog (2–4).
– In a meticulous Finnish study, only around 36% of those people who screened positive for psychosis on screening measures (self-report, questionnaire, physician assessment and hospital records) actually met phenomenological/DSM IV criteria for having a psychotic disorder (5).
– In the same study, around a third of people with conventional diagnoses of non affective psychoses would have been missed on self-report of psychosis. This dropped to 25% for people with any conventional diagnosis of psychotic disorder.
These figures are in keeping with the literature we cite for screening measures, above.
The rate of agreement between self-report of psychosis and DSM IV diagnosis of psychosis was a kappa of around 0.38, which is considered minimal, with around 15% of the data reliable (6).
Thus: taking an estimate of the UK population as 65.6 million, and lifetime prevalence of psychosis as 3% (from the same study, above), would mean that the definition used in the Understanding Psychosis document from the BPS would possibly fail to identify up to around 1.47 million people with a conventional diagnosis of psychosis.
References
1. Mathers C, Fat DM, Boerma J. The global burden of disease: 2004 update. World Health Organization; 2008.
2. Kendler KS, Gallagher TJ, Abelson JM, Kessler RC. Lifetime prevalence, demographic risk factors, and diagnostic validity of nonaffective psychosis as assessed in a US community sample: the National Comorbidity Survey. Archives of General Psychiatry. 1996;53(11):1022.
3. Ochoa S, Haro JM, Torres JV, Pinto-Meza A, Palacín C, Bernal M, et al. What is the relative importance of self reported psychotic symptoms in epidemiological studies? Results from the ESEMeD–Catalonia Study. Schizophr Res. 2008 Jul;102(1–3):261–9.
4. Jauhar S, Lawrie SM. Are these results clinically relevant? BMJ. 2011;342.
5. Perala J, Suvisaari J, Saarni SI, Kuoppasalmi K, Isometsa E, Pirkola S, et al. Lifetime prevalence of psychotic and bipolar I disorders in a general population. Archives of General Psychiatry. 2007;64(1):19.
6. McHugh ML. Interrater reliability: the kappa statistic. Biochem Med (Zagreb). 2012 Oct 15;22(3):276–82.
Some many misrepresentations of the Adverse Childhood Experience Checklist (ACE) going on here. It is not an umambiguous measure of trauma and summed scores are not interpretable. I was inspired to write a blog about this.
https://www.coyneoftherealm.com/blogs/mind-the-brain/stop-using-the-adverse-childhood-experiences-checklist-to-make-claims-about-trauma-causing-physical-and-mental-health-problems
• Discontinuation of medication: A critical issue.
Sameer + Paul said…
“
The authors are selective in quoting two observational studies which suggest improved outcome where medication was either stopped naturalistically (Harrow and Jobe, 2013) or decreased (Wunderink et al., 2013), whilst ignoring in this context an observational study showing poorer outcome in never treated people with schizophrenia followed up after 14 years (Ran et al., 2015), and a national register study showing longer life expectancy for people with schizophrenia taking antipsychotics (Tiihonen et al., 2009).
They do not mention in citing the Wunderink study that at 18 months, relapse rates were doubled in the discontinuation group, and only 20% of people actually discontinued medication at 18 months (Wunderink et al., 2007). Furthermore, in the study they cite, people in the discontinuation group were still taking an efficacious, albeit lower dose of antipsychotic than the other group (Wunderink et al., 2013).
“
Anne + Peter responded…
“
We stand by our interpretation of the literature base. There is not space here to outline all the relevant debates and (rapidly accumulating) research to which we would wish to draw readers’ attention: for a fuller critical examination see e.g. the work of Robert Whitaker (e.g. Whitaker,) and Joanna Moncrieff (e.g. Moncrieff, 2013). It is also worth reiterating that the report is not ‘anti-medication’: we acknowledge that many people find medication helpful. What we are advocating is openness on the part of clinicians that (to quote the report) “Neuroleptics can only be used pragmatically – trying a particular medication and seeing what happens. We need to be honest and take a pragmatic (‘suck it and see’), collaborative approach, talking through options and enabling the person to try different things to see what helps” (page 98).
We would agree that withdrawal from antipsychotic medication is often a difficult process and it can be difficult to distinguish discontinuation effects from a re-occurrence of the original difficulties (‘relapse’). It will be interesting to see the results of the current RADAR trial (Moncrieff, 2016) which directly compares ‘maintenance medication’ with a gradual and supported programme of antipsychotic reduction.
“
Sameer + Paul now respond…
“
We would respectfully suggest that this comment be reviewed by Prof Kinderman and Dr Cooke. The concerns we raised in the blog have not been addressed. The literature on discontinuation of antipsychotic medication is quite clear. In people whose illness fulfils diagnostic criteria for non-affective psychosis/schizophrenia, every studies where medication has been discontinued have shown evidence of relapse in a significant proportion of people. These studies are included in the following systematic reviews (1–3). Interpretations of reasons may be varied, and are hypotheses, but the overall findings are clear. This is not explicit or clear in the document.
Caution!!
It should be noted that a Dutch trial WAS STOPPED EARLY, on account of significant worsening in the discontinuation group. In the discontinuation group 88% of patients had a relapse at 9 months, compared to only 12% in the continuation group. (4).
Dr Cooke and Prof Kinderman are incorrect in their assertion that relapse cannot be differentiated from discontinuation effects. Relapse can occur months after an antipsychotic has been stopped. The longest half-life of the oral antipsychotics is Aripiprazole, which is 72 hours.
As we stated, the report has a well-written section on collaborative decision-making, and use of high doses of antipsychotics. We pointed out that the Wunderink study they cite illustrates this-lower doses of antipsychotic medication and letting people make decisions about antipsychotic treatment appear to have improved functioning in the discontinuation group. Around just under 10% were able to stop antipsychotic medication in the long term. We predict that the RADAR study will show similar results in terms of reduction of dose, which we advocate.
The response given illustrates two important points-Prof Kinderman and Dr Cooke cite narrative opinions of Whitaker and Moncrieff. We cite systematic reviews of published evidence.
Also, given our comments in regard to nosology (in the blog and response, above), we do not advocate widespread use of antipsychotic medication for people with paranoia and voices.
We respectfully ask that if an organisation is to produce evidence relating to medication they seek the opinion of pharmacists and/or pharmacologists, and represent the evidence as it stands. To do otherwise may incur unnecessary risk to the health and well-being of patients suffering from major psychiatric illness.
References
1. Leucht S, Tardy M, Komossa K, Heres S, Kissling W, Salanti G, et al. Antipsychotic drugs versus placebo for relapse prevention in schizophrenia: a systematic review and meta-analysis. The Lancet. 2;379(9831):2063–71.
2. Zipursky RB, Menezes NM, Streiner DL. Risk of symptom recurrence with medication discontinuation in first-episode psychosis: a systematic review. Schizophr Res. 2014 Feb;152(2–3):408–14.
3. Alvarez-Jimenez M, O’Donoghue B, Thompson A, Gleeson JF, Bendall S, Gonzalez-Blanch C, et al. Beyond Clinical Remission in First Episode Psychosis: Thoughts on Antipsychotic Maintenance vs. Guided Discontinuation in the Functional Recovery Era. CNS Drugs. 2016;30(5):357–68.
4. Boonstra G, Burger H, Grobbee DE, Kahn RS. Antipsychotic prophylaxis is needed after remission from a first psychotic episode in schizophrenia patients: results from an aborted randomised trial. Int J Psychiatry Clin Pract. 2011 Jun;15(2):128–34.
Response to
• Ignoring negative symptoms
•
In regard to the Understanding Psychosis Document,
Sameer + Paul said:
“
Crucially, symptoms omitted are seen in people with the highest level of impairment, who would fulfil criteria for treatment-resistant psychotic illness; the people for whom secondary services were originally set up. One of the paradoxes in modern mental health services, is that there is under-allocation of resource to those suffering from the most disabling psychiatric syndromes, such as negative syndrome schizophrenia, and a shift of resource to the detection and probable over-treatment of relatively mild psychological issues (de Leon, 2014).
”
Anne + Peter responded
“
This is the argument often made by American psychiatrist Allen Frances: Anne outlined her reasons for disagreeing with it in a co-authored blog (Frances & Cooke, 2014) with him. We acknowledge that some people (for example an anonymous commenter on Sameer and Paul’s blog) feel that the report de-emphasises the severe and ongoing nature of some people’s problems, and their need for support…
That said, it is also important to reiterate that disputing one particular interpretation of problems (e.g. that they are ‘positive and negative symptoms of schizophrenia’) is absolutely not the same as denying they exist. The report argues that each of us develops our unique set of characteristics and problems for a unique and complex set of interacting reasons. Some of us, for a variety of reasons, experience more, or more severe, problems than most and may need long term support.
Ironically, for many people the reasons for ongoing disability can include, amongst other things, iatrogenic effects of drugs and institutionalisation, and the hopelessness induced by being told you have a progressive illness called schizophrenia.
Sameer + Paul respond
– Clinicians find a way to work around such awful words such as “schizophrenia”. In early intervention services, the wonderfully ambiguous, catch-all, F29: non-organic psychosis otherwise un-specified (or some such language) avoids indiscriminate use of the term “schizophrenia”.
– But there are a proportion of people who exhibit such marked social decline and loss of personality for whom no alternative descriptor is forthcoming.
– We would also remind Peter and Anne that the negative syndrome can exist prior to a psychotic episode, and persistent negative symptoms have been reported in around a quarter of people with first episode psychosis (1).
– A skilled clinical eye can easily tell the difference between the negative syndrome and Parkinsonism.
– The skilled clinician will ask very gentle questions to try to discern between primary and secondary negative syndromes. In the former, the person is tormented by hallucinations and/or delusions, but rather than talking about them, the person withdraws from the world in silence.
– The negative syndrome carries much more prognostic and diagnostic weight than the positive symptoms. Negative symptoms are associated with poorer long term outcomes.
– The Understanding Psychosis document tends towards under-recognition of severe and enduring mental illness, such as negative syndrome, while over-pathologising relatively mild problems such as paranoia and voices (positive symptoms,which, on the whole, have lesser effects on functioning (2).
That is what the kappa value of <0.4 in the paper we cited (3) shows-screening questions about positive symptoms will not pick up people whose presentation fits the construct of non affective psychosis-where negative symptoms play a significant part.
– The following question was asked.
No response was given.
Here we ask again…
“Do any of the authors of the Understanding psychosis document have a persuasive argument that, the young person who dropped out of the 6th form, now languishing in a back bedroom, with no friends, no interests, no emotion, no communication with family, disregard for their appearance, no ambition – and with whom the clinician endures the same long silences as the parents or doesn’t get beyond, “I’m fine, I don’t need help”.
has the same psychological condition as;
the young person, who trashes their room, cuts their wrists, gets into fights with their partner, feels depressed, takes overdoses, goes to A&E in crisis – but with whom the clinician can make a space to acknowledge the horrors that the person lived through in the past, by connecting with the healthier parts of the young, still developing personality”.
…Because that is what the Understanding Psychosis document appears to be saying.
References
1. Hovington CL, Bodnar M, Joober R, Malla AK, Lepage M. Identifying persistent negative symptoms in first episode psychosis. BMC Psychiatry. 2012 Dec 6;12:224.
2. Chang WC, Hui CLM, Tang JYM, Wong GHY, Lam MML, Chan SKW, et al. Persistent negative symptoms in first-episode schizophrenia: a prospective three-year follow-up study. Schizophr Res. 2011 Dec;133(1–3):22–8.
3. Perala J, Suvisaari J, Saarni SI, Kuoppasalmi K, Isometsa E, Pirkola S, et al. Lifetime prevalence of psychotic and bipolar I disorders in a general population. Archives of General Psychiatry. 2007;64(1):19.
• Ignoring ‘bipolar psychosis’
In their blog, Sameer + Paul said…
“
There is no mention of bipolar psychosis, which has differences in aetiology, natural history and treatment response to non-affective psychoses. It also has a high degree of reliability (Tolin et al., 2016). By ignoring this, and lumping “psychosis” together, they ignore the increased relapse rate in this, as well as greater number of hospitalisations (Chang et al., 2016).
“
Anne + Peter responded
“
We refer the reader to our co-author Richard Bentall’s comments about this, and to the separate report on ‘bipolar’ experiences (Jones, Lobban & Cooke, 2011).
“
Sameer + Paul now respond…
Sameer has responded to Professor Bentall here https://www.nationalelfservice.net/mental-health/psychosis/understandingpsychosis/#comment-1045950
The authors of Understanding Psychosis on the one hand do not believe in diagnostic classification, though on the other hand point readers to the Bipolar disorder document.
We would consider bipolar psychosis to have significant differences in terms of the evidence for people whose illness fulfils this construct.
The medication section in Understanding Psychosis is broadly based on the schizophrenia literature, and though similarities may exist, eg in terms of acute response of positive symptoms, there are important differences in outcome (1–3) and response to treatments, including psychological interventions (4,5). It should be noted that the diagnostic construct has good reliability (as we pointed out in the blog)(6), and that diagnostic stability appears good from first episode of psychosis (7).
We do therefore feel justified in our assertion that the issue of bipolar psychosis has been neglected in both the Understanding Psychosis and Understanding bipolar disorder documents from the BPS.
– The evidence we cite shows that people with a bipolar illness have different outcomes which informs clinical management (1). Bipolar illness is a relapsing-remitting condition (8). The management of bipolar illness requires specialist expertise so that the chance of relapse can be minimised.
– Half of people with bipolar illness will have psychotic symptoms (9,10), as the BPS Understanding Bipolar disorder acknowledges, though this is not made clear in Understanding Psychosis.
– A significant numbers of people presenting with their first episode of psychosis will have a diagnosis of bipolar illness (11).
– Postpartum psychosis has strong associations with bipolar disorder. We are astonished that post-partum psychosis was missed in both the Understanding Psychosis and Understanding bipolar disorder documents from the BPS. This is an error in both documents, that has been acknowledged.
– In the Understanding Bipolar Disorder document, the only mention of ‘pregnancy’ is in the following sentence.
“Firstly, medication may not be an option, for example in the case of pregnant women, as the potential side effects of the medication are too dangerous”.
– Whilst the chapter on medication is written well, in terms of collaboration and decision-making, by not putting in the evidence regarding relapse and pregnancy the reader would be in doubt as to the true risks and benefits of medication.
– Discontinuation of bipolar medication during pregnancy is associated with very high rates of relapse. Those who stop medication abruptly have an 85% chance of relapse during pregnancy versus a 37% chance for those who remain on medication (12).
– For women with bipolar illness, stopping medication during pregnancy also increases the chance of relapse in the post-partum from 66% off-medication to 23% on-medication (13)
– We believe the BPS, as a scientific organisation, should consult with experienced pharmacologists in the field of bipolar illness, and if they are to give advice, incorporate evidence relating to risks, enabling people to make decisions based on evidence, as opposed to opinion.
References
1. Chang WC, Lau ESK, Chiu SS, Hui CLM, Chan SKW, Lee EHM, et al. Three-year clinical and functional outcome comparison between first-episode mania with psychotic features and first-episode schizophrenia. Journal of Affective Disorders. 2016 Aug;200:1–5.
2. Brockington IF, Kendell RE, Wainwright S, Hillier VF, Walker J. The distinction between the affective psychoses and schizophrenia. BJP. 1979 Sep 1;135(3):243–8.
3. Johnstone EC, Frith C, Crow T, Owens D, Done D, Baldwin E, et al. The Northwick Park “functional”psychosis study: diagnosis and outcome. Psychological Medicine. 1992;22(2):331–346.
4. Goodwin GM, Haddad PM, Ferrier IN, Aronson JK, Barnes T, Cipriani A, et al. Evidence-based guidelines for treating bipolar disorder: Revised third edition recommendations from the British Association for Psychopharmacology. J Psychopharmacol (Oxford). 2016 Jun;30(6):495–553.
5. Bipolar disorder: the assessment and management of bipolar disorder in adults, children and young people in primary and secondary care | key-priorities-for-implementation | Guidance and guidelines | NICE [Internet]. [cited 2015 Aug 14]. Available from: https://www.nice.org.uk/guidance/cg185/chapter/key-priorities-for-implementation
6. Tolin DF, Gilliam C, Wootton BM, Bowe W, Bragdon LB, Davis E, et al. Psychometric Properties of a Structured Diagnostic Interview for DSM-5 Anxiety, Mood, and Obsessive-Compulsive and Related Disorders. Assessment. 2016 Mar 17;
7. Fusar-Poli P, Cappucciati M, Rutigliano G, Heslin M, Stahl D, Brittenden Z, et al. Diagnostic Stability of ICD/DSM First Episode Psychosis Diagnoses: Meta-analysis. Schizophr Bull. 2016 Nov 1;42(6):1395–406.
8. Bipolar disorder – The Lancet [Internet]. [cited 2017 Nov 25]. Available from: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)00241-X/abstract
9. Dunayevich E, Keck PE. Prevalence and description of psychotic features in bipolar mania. Curr Psychiatry Rep. 2000 Aug;2(4):286–90.
10. Goodwin FK, Jamison KR. Manic-depressive illness: bipolar disorders and recurrent depression. Vol. 1. Oxford University Press, USA; 2007.
11. Salvatore P, Baldessarini RJ, Tohen M, Khalsa H-MK, Sanchez-Toledo JP, Zarate CA, et al. The McLean-Harvard First Episode Project: Two-year Stability of DSM-IV Diagnoses in 500 First-Episode Psychotic Disorder Patients. J Clin Psychiatry. 2009 Apr;70(4):458–66.
12. Viguera AC, Whitfield T, Baldessarini RJ, Newport DJ, Stowe Z, Reminick A, et al. Risk of recurrence in women with bipolar disorder during pregnancy: prospective study of mood stabilizer discontinuation. Am J Psychiatry. 2007 Dec;164(12):1817–1824; quiz 1923.
13. Wesseloo R, Kamperman AM, Munk-Olsen T, Pop VJM, Kushner SA, Bergink V. Risk of Postpartum Relapse in Bipolar Disorder and Postpartum Psychosis: A Systematic Review and Meta-Analysis. Am J Psychiatry. 2016 Feb 1;173(2):117–27.
Viguera AC, Whitfield T, Baldessarini RJ, Newport DJ, Stowe Z, Reminick A, et al. Risk of recurrence in women with bipolar disorder during pregnancy: prospective study of mood stabilizer discontinuation. Am J Psychiatry. 2007 Dec;164(12):1817–1824; quiz 1923.
Wesseloo R, Kamperman AM, Munk-Olsen T, Pop VJM, Kushner SA, Bergink V. Risk of Postpartum Relapse in Bipolar Disorder and Postpartum Psychosis: A Systematic Review and Meta-Analysis. Am J Psychiatry. 2016 Feb 1;173(2):117–27.
To PM
One of my biggest concerns is how current ‘best practice’ in psychiatry treats those with severe negative symptoms, It is my understanding (and experience) that antipsychotic medication does not improve negative symptoms and yet people are left on these medications for years without recovering. I have heard you say that clozapine is effective for some – but if it, or other medications are not effective, do you keep your patients on these medications? Or do you discontinue these medications to allow the potential or their own neuroplasticity to help them recover? Do you believe there is a possibility that being heavily medicated could in some cases prevent recovery? And are these patients ever forced to continue these medications despite the fact that they are not recovering on them?
I believe you that there are two very different types of conditions that you describe above, and that the Understanding Psychosis report deals mainly with the second condition. However I have concerns that the true horror of psychiatry may lie in the well intention efforts of psychiatrists towards those with severe negative symptoms, Saying that these people would be even worse without the medications is an argument I have heard that does not seem to have any evidence based back up. I think that if psychiatry was able to be more humble, and to admit that they just didnt know the answers, then at least people and their loved ones could try to make their best, most informed choice without the fear of coercion. This, in my opinion, is the true power and beauty of the Understanding Psychosis report: it breathes hope and empowerment and choice. Critiquing the science is very important but make sure you are being honest in your critique (For example, Robert Whitaker’s analysis of the Ran study (the Chinese study you or Sameer cites) really calls into question whether the study is actually comparing two similar groups when comparing those on antipsychotics with those never on antipsychotics). It was very telling that the review of the literature discussed in the Psychiatric Times of whether or not antipsychotics were harmful in the long run, found that the results were inconclusive, (….. and yet if you read the commentary….somehow psychiatry saw that as a win???? )
To PM I am not sure if my last comment ended up in the right place so I am hoping you know which of your discussion I was referring to :) I will (try) to put this additional comment next to my first:
I forgot to ask you about the following:
You say
” The skilled clinician will ask very gentle questions to try to discern between primary and secondary negative syndromes. In the former, the person is tormented by hallucinations and/or delusions, but rather than talking about them, the person withdraws from the world in silence.
– The negative syndrome carries much more prognostic and diagnostic weight than the positive symptoms. Negative symptoms are associated with poorer long term outcomes.” Can you explain more what you mean by the primary and secondary negative symptoms. I understand well what you mean by the ‘primary’ example. What is the secondary negative symdrome and which (or both) of these conditions do you think are related to poorer outcome?
…..and also could negative syndrome (either primary or secondary ) ever also look similar to what people call severe psychotic depression or severe PTSD. Thanks in advance for any further elaborating information you could give me about these
As I reread this blog again, I wish I had also asked SJ (as well as PM), or indeed anyone with relevant information to reply to my questions and concerns about the presentation and treatment of severe negative symptoms or negative syndrome. ( Or how about a whole blog post devoted to this issue?) It seems to me that there is very little information about this anywhere. I have often heard it said by psychiatrists that antipsychotic medication does not ‘treat’ negative symptoms, and yet people with these syndromes are left on these medications for years. (This is my big concern). There seems to be either an understanding or presumption (depending on how you look at it) that these people would be even worse off without this medication. There does not, however, seem to be any evidence -based research supporting this understanding or ‘presumption. .Some people say that these people are given ‘years of stability’ with antipsychotic medication. It would be great to get further elaboration of what that means, and how this stabilization looks different when compared to someone not medicated who suffers mainly from negative symptoms (of course not comparing them to those who are in the throes of intense positive symptoms), Any of the case studies I have heard of where people have recovered from these syndromes after YEARS, have been for people who were NOT medicated or who were taken off of medication (I am thinking of Katherine Penney, Silje Marie Strandberg,) If psychiatrists have case studies of people on antipsychotic medication who suffered from negative syndromes for years, and then later recovered while they were on medication, that would be great information to know. I think Paul Morrison talks about some people recovering (after years????) when they are treated with clozapine and it would be useful to know how that treatment ‘sticks’ (eg, do they continue to be recovered for years??)
For people who have mainly positive symptoms there seems to be many recovery stories both within and outside of psychiatry. (I understand that research needs to continue in this area to make sure people are not medicated unnecessarily, but it does seem to be talking about a completely different kettle of fish)
I have been checking back and will continue to do so to see if there is anyone out there who is still reading these comments and who would be willing to provide further elaboration on these issues or who would direct me to areas of research or discussion on these issues. [e.g. the difference between primary and secondary ‘negative’ syndrome, the prognosis of those two different types of negative syndromes, recovery stories both with or without medication of people who have these presentations for a long time, the overlap among the many conditions which seem to present like a negative syndrome (psychotic depression, catatonia, severe PTSD, schizophrenia, severe DID), whether patients who don’t recover on medication are taken off of it to see whether their recover better on their own]
I forgot one of my questions….Also I am curious what it means when people say patients (who are not recovered) experience ‘years of stabilization’ and how does this look different from non-medicated patients with negative syndrome (who are not in throes of an acute state ). I am assuming the authors at some point will be checking back for comments and I would so love to get a reply or direction to information….also I would appreciate input from anyone who is still reading this comments.
As the mother of a daughter living with schizophrenia, I deeply appreciate the work of Sameer Jauhar, Paul Morrison, Keith Laws and James Coyne. Their work keeps drawing attention to the needs of people living with the most severe mental illnesses.
I’m grateful that their conceptions of schizophrenia acknowledge the severe cognitive impairments that can occur with schizophrenia and other psychotic disorders. Some consumer leaders seem to be insulted if these cognitive problems are mentioned and believe that drawing attention to them creates stigma. However, NIMH points out that these cognitive losses are widespread and are often the biggest factor in ongoing disability. I know from mentioning these problems elsewhere, that some are quick to blame any cognitive problems on meds. Since public mental illness literacy programs in the US, Canada, and, I’m guessing, in the UK, are so inadequate, many of us never heard about these well-researched cognitive losses. I’ve met many other parents, like me, who were confused about the seemingly inexplicable cognitive losses we were seeing in our children. These losses appeared long before the onset of psychotic symptoms and the introduction of anti-psychotic medications. The sophisticated writing skills of the psychiatric survivors who have written their comments here are very impressive; however, readers need to remember that forums like this aren’t hearing from the people whose illnesses include significant cognitive impairments.
I was very happy to see clozapine mentioned especially since this medication saved my daughter from the horrors of psychosis when other anti-psychotics stopped working. It’s generally acknowledged that this medication is under utilized in the US and Canada. As well, families and some clinicians aren’t learning essential information about it. Apparently, agranulocytosis only occurs in !% of the people who use clozapine. Nevertheless, I’ve met many parents who bemoaned the fact that their daughters and sons were doing so well when they were on this medication, but that they developed this rare disorder. My daughter once had a problematic blood test. Fortunately, her very collaborative psychiatrist let us know that she should exercise for 20 minutes and retake the test. Her subsequent blood test was fine as have all the others been in the many years since then.
As an American-Canadian, I’m very interested in mental illness policies. (www.huffingtonpost.ca/susan-inman/) In both countries, I’m very connected to other families who share similar perspectives. I haven’t been able to locate these kinds of families in the UK and, if there is a group with a website, I’d very much appreciate learning about them. I wonder if the abuse/trauma rhetoric about the origins of schizophrenia has left these family caregivers too shamed and blamed to speak out. People with the most severe illnesses often rely on family caregivers; when these people’s illnesses prevent them from being outspoken advocates themselves and when their families aren’t given a voice, then crucial perspectives are missing from discussions about the most helpful mental illness policies and services.
I’ve never seen a forum like the Mental Elf in either the US or Canada. Being able to read and consider the opposing viewpoints expressed here is tremendously useful to those of us having to make decisions about these contentious issues.
Thanks for your comment Susan.
I know of many psychiatrists who came into the profession because they were inspired by the ideas of Ronald Laing and David Cooper (the original counterculture psychiatrists from the 1960s).
However, after a few on-call shifts, one soon realises that major psychiatric illness does exist, rather than being a social construct or whatever.
Laing was a brilliant thinker and writer, (and so much more persuasive than the present generation of anti-psychiatrists).
But – his legacy is severely tainted by the idea that parents were the root cause of their children’s schizophrenia. There is no merit in going back to those old, discredited ideas.
Paul
Thank you for this message, Paul.
I, too, was very interested in Laing/Cooper. I don’t share any ongoing positive feelings.
You may be interested in a piece I wrote for Psychiatric Services last year. It talks about the two competing paradigms informing mental health services:
https://ps.psychiatryonline.org/doi/full/10.1176/appi.ps.2016001
I’m very happy to say that Dr. Elinor McCance Katz, who wrote the expose on the US Substance Abuse and Mental Health Services Administration (SAMHSA) that I mention, is now overseeing SAMHSA. Several hundred activist American families worked for several years, with assistance from DJ Jaffe, to help bring about the legislative change that made it finally possible for a psychiatrist to have a leadership role in guiding mental illness policies. SAMHSA will now also be acknowledging and addressing the needs of people with severe psychotic disorders. A new and remarkable book by DJ Jaffe reveals the kinds of policies promoted by SAMHSA that have had dire consequences for people with SMI: Insane Consequences, How the Mental Health Industry Fails the Mentally Ill. Paul. I think you will be especially interested in this book given your observation that: “A lot of clinicians feel this group are being short-changed by modern mental health services, but that is another story.” I hope you will tell that story.
The careful analysis, in the critique and the comments, of research that I see used constantly is tremendously helpful to me.
With appreciation,
Susan
Dear Susan,
I found your piece in Psychiatry Services very helpful, and will be making it required reading for trainees. Thank you.
I have dropped you an email using the details from that article.
I would like to akcnowledge your courage and honesty in giving your views, and putting your name to them. We both work as Consultants within psychosis services, and sincerely appreciate your comments. It is important that evidence is disseiminated clearly and transparently, and this was one of our reasons for writing the blog.
Sincerely Yours,
Sameer
thanks for shoutout.
I noticed that one thread in these comments refers positively to the impact of the “Mad Movement.” In Canada, Mad Studies celebrate their influence in Disability Studies programs. This influence has very negative conserquences for people who are living with the most severe mental illnesses as I discuss in the article on “The BC Mental Health Act Protects My Daughter.”
http://www.huffingtonpost.ca/susan-inman/bc-mental-health-act-autism_b_14137954.html
I don’t know the situation in the UK. However, in the US and Canada, “advocates” successes in keeping very psychotic people from receiving the treatments they are too ill to know they need have had disastrous consequences. People with untreated psychotic disorders become victimized, homeless, addicted and, in shocking numbers, incarcerated.