Continuing our recent reflections on how things in mental health have changed Richard Hallam and Michael Bender take the long view of schizophrenia
|The cuckoo's nests have closed. What |
else has changed in mental health?
The theme of this year’s World Mental Health Day on 10th October is Living with Schizophrenia. For those of us of a certain age, and with a historical bent, it’s also an opportunity to compare services now with those provided when we started out in the 1960s. Recently we’ve had the privilege of editing the diaries and letters of a young man, David, a patient in the mental health system five decades ago. The resulting book offers, we think, a window into the social attitudes of the time and the way mental health problems were treated.
David progressed in 1958 from child guidance clinic, to adolescent unit, to revolving door hospital admissions (five as an inpatient and two as a day patient), and three failed attempts at rehabilitation. He spent nearly six years as an inpatient although he was never placed in a long-stay hospital. Fortunately, he did not receive narcotherapy, insulin coma therapy, or a leucotomy, like some of his fellow patients. He eventually opted for ECT, perhaps a difficult choice, but the offer was then withdrawn. When he committed suicide at the age of 27, he was working and living independently, and in a rational frame of mind. Something that hasn’t changed is the high rate of suicide among people with a label of schizophrenia.
The NHS in the 1960s was a service without geographical barriers. David received help wherever he happened to be living or was sent. Nowadays, moving home across the street could mean transferring to a new set of workers in a different CMHT. We know of one young man, recently readmitted to hospital during a psychotic episode, who was told to go back home by bus to fetch his medication (which he was quite incapable of doing). Medication had to be paid for by his GP, not the hospital!
Financial accounting in the 1960s followed a corner shop mentality. David was paid by the hour for work he carried out at OT, but when he worked outside the hospital, he had to return a large proportion of his earnings for his upkeep. The message he continually received was ‘get back to work’ and some of his psychiatrists adopted the attitude that he was both mad and lazy. Attempts at industrial rehabilitation in simulated real-life conditions always failed, and there appeared to be no assessment of his psychological needs. In fact, there was an absence of any psychological intervention apart from cognitive assessment.
In the early 1960s, nurses were forbidden access to his case notes and they had no designated therapeutic role. We interviewed a man who had nursed David and remembered him well. Apparently, nurses became close to patients through daily contact, but speaking to relatives about family matters would have been seen as treading on medical authority. This proscription seems particularly absurd given that we could find no evidence that David ever received any counselling and interviews with doctors were solely concerned with privileges and medication.
Psychiatric textbooks of the period painted schizophrenia as an incurable progressive deterioration of the personality. Medication was given to merely ameliorate its effects. David received almost every new drug as it appeared on the market, becoming seriously addicted to Mandrax. He firmly believed that medication was destroying his memory and intelligence, and there are some who would argue that he may not have been far off the mark. One reason for writing his diaries was to have a record of what happened to him.
With respect to viewing schizophrenia as amenable to therapy, there has been a profound revision of the dogma of intractability and inevitable decline. These days there may be greater optimism about new approaches to therapy. However, whether there is a sufficient number of skilled professionals and other resources to make this presently available is a different matter. As in the 1960s, the first line of treatment is still medication.
According to surveys the stigma of ‘severe mental illness’ has changed little. David’s family always regarded him as rational, if occasionally a bit ‘potty’ or ‘bonkers.’ David’s preferred terms of abuse, applied as much to himself as to his doctors, included ‘psychotic’, ‘paranoid’ and ‘neurotic.’ Illustrating the stigma attaching to these labels, when David attempted to explain to a potential employer that he had only ‘mild schizophrenia’, this was met with fury by his Mental Welfare Officer who said that he had deliberately sabotaged his chances. Shortly before his suicide, David talked of being tormented by local youths, and he was dismayed to discover at work that everyone knew he was living in a half-way house in the grounds of a mental hospital.
So what has happened to the system of David’s time? The closure of the large mental hospitals and the introduction of community care is the most obvious change. Some of the hospitals he attended remain open. One is now a housing estate. Of two rehabilitation settings, one is a private school, the other a Management Training Centre. Hospital beds have been reduced from around 150,000 in the 1950s to around 20,000 today, leading one to doubt that there is a sufficient number for temporary refuge.
Acute wards in David’s hospital contained people with a toxic mix of problems, as happens now, although it is unlikely that present day wards would include the dementing elderly and youths convicted of GBH. On the non-acute wards he was able to enjoy a leisurely, if rather pointless, existence of evenings in the pub, cricket, reading library books, dances at OT, and conversations with nurses and fellow patients about current affairs. To live independently today, in loosely supervised accommodation where residents do not talk to each other, is probably far more demoralising. Real involvement in the community was rare. David eventually achieved something in this respect but at the cost of great stress to himself. There are now ‘survivor’ movements that offer alternative identities and a political voice and this represents one of the most profound shifts since David’s time.
Perhaps of most concern though are the present cuts to mental health budgets and welfare benefits. There are more than a few echos of 1960s in the emphasis on paid work and the view that self-management as the solution to everything. In this respect it's unfortunately a case of plus ça change Mr Duncan-Smith.