Tell us about aims of the campaign
The CASL campaign began as an idea that came up in conversation following a Hearing Voices Network conference in Manchester, earlier this summer. A colleague pointed out that in Japan, the concept of schizophrenia had been deemed so out of date and stigmatising that it had been replaced with a new concept, Ąintegration disorderĒ. This isnĒt just a cosmetic name change. Schizophrenia in Japan is seen as a chronic deteriorating brain disease with little hope of recovery; the stigma attached to schizophrenia was so severe, clinicians were reluctant to tell people what their diagnosis was.
Integration disorder is different, itĒs viewed as a syndrome, not a disease, with multiple interacting causes, multiple treatment responses (not just medication), and crucially, many possible outcomes including full recovery. By 11pm in the Kro Bar in ManchesterĒs Piccadilly that night we made a unanimous decision that we needed something similar in the UK. So we decided on the name CASL and put out a small stop press article in Asylum magazine. IĒm not sure what we were expecting.
The next thing to happen was that Professor Marius Romme from Holland contacted us offering support. This was really important because he has such a huge international reputation. And the whole thing took off from there. The situation now is that itĒs still very early days. Over the next few months we aim to build a campaign to replace the label schizophrenia with something more scientifically and morally acceptable. The campaign is an alliance of service users groups such as The Hearing Voices Network and some of the family organisations, alongside senior academics and researchers such as Mary Boyle, Lucy Johnstone, Terry Lynch and John Read. WeĒve also had international interest from Australia, the US and China. Professor Austin Mardon, from Canada, is playing a big role. HeĒs an interesting chap in that heĒs a major academic having published over 100 scholarly articles who has a diagnosis of schizophrenia. While he has complied with his medical treatment he has recovered because he tried to have a ĄlifeĒ.
How will ditching the term schizophrenia help those so labelled?
We have known for a long time that the diagnosis of schizophrenia has been highly suspect since its inception. It has little validity or reliability, and tells us almost nothing about cause, prognosis or suitable treatment options. Richard Bentall has described schizophrenia as about as informative as a horoscope. It has become a catchall, blanket diagnosis. For example itĒs been calculated that it is possible to gather 14 people together in one room who have nothing in common together at all and diagnose them all with schizophrenia. This is just unacceptable. The consequence of this scientific muddle-headedness is that we donĒt know how best to help people towards recovery. In the UK, with all the finances of the NHS, around one person in three recovers. In Nairobi, Kenya, where people are offered very little, recovery rates are one in two. Bad science has consequences, and thatĒs why we need a change.
From the perspective of the service users in the campaign, bad science is a secondary issue. Their main concern is the appalling level of stigma and discrimination associated with the label. Schizophrenia has ceased to be a meaningful medical diagnosis and has become a term of abuse, associated with violence, dangerousness, unpredictability, split-personality, hopelessness and the need for industrial amounts of medication to ensure the safety of society. It is blatant prejudice. Little wonder that, as Professor Marius Romme has pointed out, in the current climate, most people who make a full recovery do so in spite of the psychiatric system.
How will it affect professionals in the field?
Our campaign also has important and positive implications for professionals. Replacing schizophrenia with more meaningful terms such as trauma-related psychosis, or anxiety psychosis will offer the opportunity to individualise care plans in a spirit of hope and potential recovery. Current diagnostic practice leads to inevitable frustration and burn out.
How can MHP readers find out more and get involved?
Anyone who would like more information can contact us at CASL@asylumonline
Paul Hammersley is programme director, post-graduate studies, COPE Initiative, University of Manchester