Schizophrenia a poorly understood disease

Press, 26 November 1981, Page 26

Schizophrenia a poorly understood disease

Parliamentary reporter The annual meeting of a national organisation was held recently at Porirua. It attracted little attention from the news media, because the common interest of the delegates is poorly understood by the public, and what is widely known about it is usually wrong. The annual meeting was that of the Schizophrenia Fellowship, set up to help sufferers from schizophrenia, but even more to help their immediate families and those coping with schizophrenia — whether with chronic disability or a mild form. Unfortunately, there are many examples of continuing poor publicity about schizophrenia which propagate the misconceptions about it. Earlier this year, the “Listener” printed a letter by a Mr G. Lewis, of Auckland, about one particularly unfortunate film, which the fellowship had tried very hard, but unsuccessfully, to have cancelled.

Schizophrenia is not a palatable or fashionable complaint. But the fellowship believes that avoiding statements its members do not like will not make the condition easier to bear or live with. Members believe that facing and accepting the disorder honestly and as knowledgeably as possible will make everyone’s life easier.

On this basis, the fellowship is producing a booklet for the benefit of sufferers, their families, and the public. It is also hoped that professionals in many disciplines will learn from it, and that they will then understand what it is that those involved need and want to know. Three good posters have also been introduced which, if not palatable to many people, tell the truth about schizophrenia. Organising the visit of an overseas expert, Professor John Wing, was a big achievement of the fellowship last year. He spoke to many sufferers, their families, graduates and undergraduates in the medical field, on a. variety of mental health topics. Dr Donal Early, brought out by the Otago Hospital board, also talked about his concept of housing for the mentally disabled and other work at Bristol in England. Moves to change aspects of the Mental Health Act,

1969, are being studied. Many of those using the act find themselves disagreeing over how to interpret it. This is being discussed with psychiatrists, lawyers and politicians.

The fellowship is concerned about how well it can represent so many people. There are more people in hospital world-wide with schizophrenia than with any other single disorder, but the fellowship has only one paid worker and has not been able to begin any research so far. It has applied for funds so it can have at least one worker in 'each main centre. Members feel there needs to be much more education of sufferers, families, profesionals and the general public. This is an immediate need. The fellowship’s president, Mrs Christine Staniforth sums it up: “When a doctor has made a diagnosis, and will divulge this to colleagues, but not to the sufferer or the family, and this still does happen with depressing frequency, we need to educate the profession that we have the right to know; that although many people may express grief, rejection of the information, or incomprehension, in the end these people are all going to cope a whole lot better than if they are totally ignorant. “A label to a most distressing combination of

symptoms is still a relief. We need to educate many other professional people that schizophrenia exists. There are still professional carers who will deny its existence, for what reason it is hard to understand.” Politicians had to be educated that although thousands of New Zealanders suffered from schizophrenia, psychiatrists were lacking, as were all the ancillary services needed for the general welfare, rehabilitation and housing of the mentally disabled, said Mrs Staniforth.

The fellowship was working to formulate a policy on housing. The lack of suitable housing gave rise to appalling distress for both, the sufferer and his family.

Mrs Staniforth said there were those suffering from the disease who felt they should not be living at home with their middle-aged or elderly parents, and of course most parents desperately wanted to find acceptable alternative housing for their children. The choices, if and where they existed, however, were generally not acceptable. It was surely not an acceptable principle, particularly in New Zealand, that those, people who through no fault of their own were not able to live fully independent lives should have to accept living conditions of the lowest level, said Mrs Staniforth.