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| Launch of the report |
I only attended the morning session, and this is a brief report of the content of the talks I heard. Peter Kinderman (Professor of Clinical Psychology at the University of Liverpool) opened the session and welcomed the audience and the speakers.
The first speaker, Luciana Berger (MP and shadow Minister for Public Health and Mental Health) highlighted the need to invest more in mental health and make sure that mental health receives the same attention and resources as physical health. She praised those sections of the report suggesting that psychosis often is best tackled not with medication but with psychological therapies. This is something that she promised to work on to ensure that in the future the NHS can deliver better services.
The second speaker, Mike Pringle (President of the Royal College of General Practitioners) emphasised the important role of GPs in helping people who experience mental distress to navigate through the system. At present, GPs do not have the knowledge and resources to do that effectively and the temptation is to prescribe drugs, but prescribing drugs is not the answer to everything. GPs need to know what the options are.
In a very powerful and moving talk, the next speaker, Jacqui Dillon (writer, campaigner, trainer and member of the Hearing Voices Network), described the story of a child experiencing parental abuse, child for whom there was "no place of safety". The child begins to hear voices that comfort her and protect her at first, and then threaten and terrify her. She begins cutting herself and banging her head against the wall. By determining what she eats, overeating and forcing herself to vomit, she finds a way to control her world. She reads a lot and the characters of the stories become friends, are internalised. Voices help her to survive. When she grows up she remains silent about her past. A turning point is when she becomes a mother and looking at her own daughter, she finally sees that her body can do something good. But she becomes convinced that someone wants to hurt her and her baby because she knows that the world is not safe. She feels that there is no escape from the past, so she looks for support. But the people she encounters repeat the hurtful things that she heard when she was abused, that she is crazy and ill. She finally meets brave and wise people who help her and love her. Gradually she begins "to feel real" and accepts support. One of the messages I took from this story is that psychotic symptoms can be a way to cope with trauma. Another is that labelling someone as mad and ill when they need to be listened to is a mistake.
Anne Cooke (Co-ordinating Editor of the Report) emphasised that the report is for the public, it is a public information report. It is written in an accessible way, avoiding jargon, and it is destined to professionals, people with experience of mental illness, carers, journalists, politicians. It describes a psychological approach to psychosis and is divided in different sections: (1) what psychosis is; (2) why so many people have psychosis; (3) what can help; (4) what we should do; (5) where we can find useful resources. The report argues that "mental illness" is just one way to describe experiences such as hearing voices and having unusual beliefs. They can also be considered as parts of people's personality, those parts that "get them into trouble but that they would not want to be without". In this framework where different ways to understand what we call psychosis are included, medication is not a universal remedy, but a coping strategy that can help some people. But medication is not the only way to deal with these experiences, because psychosis is not due to an underlying biological abnormality that needs to be "corrected". Also, medication can have unwanted side effects.
Geraldine Strathdee (NHS National Clinical Director for Mental Health) talked about the need for people with psychosis to access effective treatment (including psychological therapies). In order to ensure that they have this access, service users and charities need to continue to mobilise media and government with their stories, but also clinical psychologists and psychiatrists need to make themselves heard. We need to understand that people can be broken but can get better as mental illness is not inevitable and is not forever and the government needs to endorse an evidence-based approach to treatment and accept that psychological therapies are effective and must be offered.
Sam Challis (Information Manager, MIND) argued that it is important not to force people to take medication, but also acknowledged that medication can help many. Similarly, diagnosis of mental illness may be not what some people need, but helps combat some aspects of stigma (as the person who is viewed as ill is not viewed as crazy, stupid, or deceitful). Antonia Borneo (Rethink Mental Illness) talked about the need to redistribute resources. Too many resources go into the crisis-end of the process. More resources need to go into prevention, early intervention, authentic care and support (including psychological therapies).
Robin Murray (Professor of Psychiatric Research at the Institute of Psychiatry, King's College London) represented the Royal College of Psychiatrists. He started by mentioning the work of Emmanuelle Peters as one of the first people to show how common psychotic experiences are in the non-clinical population. He also highlighted that cognitive behavioural therapy is very important but in many trusts people are not even offered this kind of treatment. He recommended that people should check the recently published Schizophrenia Audit (2014) for more details about the different approaches to mental health care across the country and the different ways service users feel about their care. He reinforced one of the main themes of the day, that having a diagnosis of schizophrenia is not a life sentence.
For instance, the AESOP study showed that 10 years after a first psychotic episode the great majority of people show no symptoms and are no longer on medication. He also emphasised (as other speakers before him) the importance of considering the social and environmental causes of psychotic episodes, explaining for instance that the dopamine system is more reactive after child abuse and that the reaction of the dopamine system should be described not as a cause of psychosis but as a consequence of social risk factors for psychosis. He mentioned what he saw as two important omissions in the report: (1) the biggest killer of people with psychosis is cigarette smoke and (2) one powerful trigger is cannabis use.
Richard Pemberton (Head of the British Psychological Society Division of Clinical Psychology) asked how we should apply the ideas developed in the report and move beyond the dissatisfaction with current services. He advised clinical psychologists to be "angry in a positive and constructive way". Service user and report contributor Jo Hemmingfield, who leads the Experts by Experience section of the Division of Clinical Psychology at the British Psychological Society, talked about the risk of being coerced and oppressed as a result of a diagnosis. Being given a diagnosis (she used her own example of being told that she had bipolar disorder) is a life-altering experience especially when people are particularly sensitive and vulnerable. Her main message was that there should be no "pushing around" in care. Mental illness itself, if there is anything that we should be calling "mental illness", is just a response to being pushed around.
Anne Cooke went back to speaking about the motivation for the report after a brief break. She said that the main motivation for the report is the attempt to change society’s approach to psychosis. In particular, she wanted to challenge the stereotypes associated with psychosis and the view that schizophrenia is a severe, progressive, life-long brain disorder and that drugs are the only way out. She emphasised that we know about psychotic experiences is what people with those experiences tell us, and the rest is interpretation (a point that Rufus May, another contributor to the report, also made in the last talk of the morning).
Currently, care, benefits and income support come to those who have a diagnosis, so having a diagnosis is paramount. But there should be other ways of helping and supporting people with psychotic experiences, because receiving a diagnosis has social meanings and social consequences. Diagnosis is often associated with shame. In services, there is little listening to people and lot of “I know what is going on and I know what is best for you”. But if it’s true that people experiencing psychosis often react to mistreatment in childhood, we need to see psychotic experiences as meaningful and think more systematically about preventing abuse and the other social causes of psychosis.
Richard Bentall (Professor of Clinical Psychology, University of Liverpool) summarised the differences between what we used to believe about schizophrenia 30 years ago, and what we now believe. We used to believe that schizophrenia is different from other psychiatric disorders, and largely caused by genes. We used to believe that it is largely a brain disease and that psychological therapies are useless in dealing with it. But now we believe that there is no dividing line between psychosis and normal functioning. Epidemiological studies have shown that hallucinations and delusions are commonly experienced in the non-clinical population and that there are "happy psychotics": many people with psychosis live in the community and without psychiatric treatment (Romme and Escher 1989, 1994).
Also, it is no longer clear that there are distinct mental disorders. We observe widespread co-morbidity, that is, people seem to suffer from the same symptoms when they have different diagnoses. Even psychotic symptoms do not fall into one neat cluster, but they have five dimensions: (1) positive symptoms; (2) negative symptoms; (3) depression; (4) mania; and (5) cognitive disorganization. The key features to determine whether such symptoms are bad for you is whether they cause hopelessness, loss of self-esteem, and feeling excluded by the community. Also, the role of genetics in the characterisation of individual mental disorders needs to be reassessed. Some people have a higher risk for mental problems in general, but there is no genetic make-up leading to a higher risk of developing a specific disorder. Urban living, migrancy, poverty, separation from parents, social exclusion, bullying, adverse experience in childhood are all major risk factors.
The launch was a wonderful opportunity to share points of view on psychosis and inform the lively debate on how we should understand mental distress and support people who are distressed.