A report, published by the British Psychological Society (BPS), critiques the current state of knowledge of psychotic symptoms and the harmful implications of standard treatments, and makes suggestions for what needs to change.
One week following the government’s announcement of its review of mental health legislation, the British Psychological Society’s Division of Clinical Psychology published an open-access report challenging the existing framework conceptualizing “psychosis.” The authors attempt to dismantle the notion that schizophrenia is a “brain disease” which results in violent behaviors best regulated by medical intervention.
“We hope that this report will contribute to a fundamental change that is already underway in how we as a society think about and offer help for ‘psychosis’ and ‘schizophrenia,'” the authors write. “For example, we hope that in future services will no longer insist that service users accept one particular view of their problem, namely the traditional view that they have an illness which needs to be treated primarily by medication.”
Aiming to impact service providers, users, and policy-makers, the report comprehensively reviews the current paradigm surrounding treatment for “psychosis,” as an updated version of a previous report, published in 2000. The authors include distinguished psychologists, representing eight universities and six NHS trusts, and people who identify with having experienced symptoms associated with “psychosis.” More than a quarter of the contributors come from the second group, referred to as “experts by experience.”
Taken together, the piece provides new insights by contextualizing psychotic presentations within interpersonal and sociopolitical contexts and repositioning what we know about psychosis within the current scientific literature.
The report begins by reviewing what has been commonly understood as psychosis (hearing voices, believing in things that others find strange, speaking in ways others find difficult to understand, and experiencing confusion that might be perceived as a loss of touch with reality). The authors underscore, however, how heterogeneous these experiences are, emphasizing the unique nature of these experiences across individuals and cultures.
Culture, they add, can radically influence the presentation of experiences (e.g. what kind of voices one might hear), how one understands and makes meaning of their experiences, and how one chooses to describe or explain their experiences to others. Misattributions by Western psychiatry have historically pathologized different groups or cultures in what some call a form of “cultural imperialism.”
Additionally, they cite research which finds that many people have beliefs which others consider to be strange and that up to 10% of the population hears voices at least once in their life. While some may be frightened or distressed by these experiences, others never seek help or come in contact with mental health services simply because they are not bothered by what they experience. Some people find hearing voices to serve a helpful function in their life, or see them as spiritually enriching.
“The main thing that appears to distinguish them from those who come into contact with mental health services is the extent to which they, or those around them, find the experience distressing or frightening.”
One voice-hearer described the following:
“When you can’t find a way out when you get into a complex situation, they (voices) help guide you. You don’t have to listen, you don’t have to take their advice but it’s nice that they give it anyway.”
The authors therefore suggest understanding “schizophrenia” experiences on a continuum rather than conceptualizing it as a discrete construct. A nuanced and diverse understanding allows for greater inclusion of the various frequencies and intensities of experiences. Some people experience events such as hearing voices occasionally or in less distressing patterns whereas others might characterize them as more enduring and disruptive.
Considering the expansive and diverse presentation of experiences, research, unsurprisingly, demonstrates that reliability across clinicians remains low, varying especially across different doctors, hospitals, and countries.
“Even experienced clinicians who have been given extra training in applying the criteria, only agree on a broad diagnostic category about 50 per cent of the time.”
Yet, the traditional view of conceptualizing psychosis is one in which people either have it or they do not. This idea has taken hold in the field, as different diagnostic systems, including the DSM, have emphasized psychosis as qualitatively distinct state or presentation.
The authors expand on how providing a name for a phenomenon is itself misleading, and perhaps dangerous, especially when it is not homogenously experienced. They reference Psychiatrist Jim Van Os, who writes:
“The complicated, albeit ultimately meaningless, Greek term suggests that schizophrenia really is a ‘thing’, i.e. a ‘brain disease’ that exists as such in Nature. This is a false suggestion.”
A contributor who received a diagnosis of schizophrenia describes their reaction to their diagnosis:
“I was labelled with all sorts: eating disorder not otherwise specified, major depressive disorder, borderline personality disorder, schizoaffective disorder and eventually schizophrenia… that was the one that knocked the stuffing out of me completely. What was the point in fighting if I was going to be suffering from a lifelong brain disease forever?”
Another writes, “I am labelled for the rest of my life…I think schizophrenia will always make me a second class citizen… I haven’t got a future.”
While some contributors depict a disempowering effect of receiving a diagnosis, others discuss the benefits arising from the label:
“I think I prefer my illness having a name because it makes me feel less lonely, and I know that there are other people experiencing my kind of misery. And that people live through my illness and make a meaningful existence with it. But I also have to be careful not to adopt the sick role, since I know I would just give up if I did that.”
The diagnosis, writes the authors, does not provide any information on the etiology and interpersonal context of these experiences, therefore privileging internalizing explanations rather than those that address the impact of experiences such as trauma, poverty, discrimination, and institutional racism.
Recent recommendations have moved away from using diagnoses because of the observable negative impact it can have, particularly around generating stigma, further discrimination, and a medically pathologizing appraisal of experiences. The British Psychological Society (BPS) is one such organization that has criticized DSM-5 and ICD-10 diagnoses, calling for “a paradigm shift in relation to the experiences that these diagnoses refer to, towards a conceptual system not based on a ‘disease’ model.”
Other organizations, such as the Schizophrenia Commission, have joined in on questioning the usefulness of diagnosing, launching an investigation on the impact of labeling people’s experiences.
Moreover, diagnostic constructs which focus exclusively on the presentation of symptoms obscure a holistic understanding of individuals’ wellbeing. People who hear voices or hold unusual beliefs oftentimes proceed to live meaningful, functional lives untroubled by these experiences. These experiences challenge approaches seeking to simply reduce “symptoms.”
As one individual explains:
“I work four days a week in a professional job; I own my own house and live happily with my partner and pets. Occasionally I hear voices – for example when I have been particularly stressed or tired, or I have seen visions after a bereavement. Knowing that many people hear voices and live well, and that some cultures see these experiences as a gift, helps me to never catastrophise or to worry that it may be the start of a breakdown. Although I am lucky that the experiences have never been as upsetting as some people’s, if someone had told me it was madness I could have got into a vicious cycle and struggled to get out.”
Alternatively, the authors highlight the factors that seem most influential for recovery from distressing experiences and overall wellbeing: “connecting to the world outside of oneself (e.g. supportive relationships, spirituality), hope, a positive identity beyond being a patient, finding meaning in life, and empowerment (learning what helps and so gaining control, and having the right opportunities).”
Infused in these factors is the theme of relationships and support. Unfortunately, however, media images are saturated with harmful stereotypes of people who hear voices, experience schizophrenia, or hold beliefs perceived to be odd. They are most commonly depicted as likely to commit violent crimes. Yet the authors are clear in dispelling these myths surrounding a misled association between experiences of psychosis and violence.
“In contrast to media stereotypes, in reality few people who experience paranoia or hear distressing voices ever hurt anyone else. It is very slightly more common for people with psychiatric diagnoses to commit violent crimes than for those without such diagnoses. However, the difference in rates is extremely small: far less, for example, than the increased risk associated with any one of: being male, being young, having consumed alcohol or used street drugs, or having been violent in the past.”
On the other hand, mental health service users are much more likely to be victims of violence, perhaps because of the perpetuation of such harmful stereotypes that serve to incite fear in others.
Ultimately, the writers emphasize the need for service providers to respect the views of clients, as the etiology and presentation of experiences associated with psychosis are uniquely contextual and ill-fitted to reductive explanations, particularly those which attempt to fully confine these experiences to biological models.
While decades of research propose genetic, neurochemical, or other brain structures and functions as underpinning these experiences, the authors expressly state that “to date, we do not have firm evidence for any specific biological mechanism underlying psychotic experiences.”
Not only does the “brain disease” explanation privilege drug treatment over talking treatments, making the latter less accessible, it has created a culture in which service providers are discouraged from attempting to understand the individual’s experiences or their context.
Part 2 of MIA’s coverage of this report (to be published next Monday, October 23rd) will expand upon theories that understand trauma, structural violence, and sociopolitical factors as underlying the development of psychotic symptoms. The report features additional contributions by voice hearers followed by implications for research, practice, self-help, and a call for a paradigm shift in the field toward a more humanistic understanding of these experiences.
Cooke, A., Basset, T., Bentall, R., Boyle, M., Cupitt, C., Dillon, J., … & Kinderman, P. (2017). Understanding psychosis and schizophrenia, Revised version. London: British Psychological Society, Division of Clinical Psychology. (Full Text)