Over 40 years ago, one letter led to the creation of a national charity. Here is John Pringle's letter to The Times about schizophrenia from May 9, 1970. John later founded the National Schizophrenia Fellowship, which is now Rethink Mental Illness. The article is reprinted by courtesy of the Editor
A case of Schizophrenia
"The word “schizophrenia” is flung about today with flip facility, bobbing up in films, television scripts, literary criticism, even political articles, mostly as some sort of modish synonym for indecisiveness. But no one who has seen the acute medical condition would ever want to use it except in its correct context.
Schizophrenia is a fragmentation or disintegration of the ego, that central “I” or “me” which we all take for granted, unaware of the delicate balance of the elements inside us. According to the severity of the attack, the effects may range from mild disassociation of personality to a total withdrawal from human contact. Virtually nothing is established about its aetiology or its genetic, environmental or other predisposing factors, so no means exist for either prevention or permanent cure. It may strike at any age or in any walk of life, but there is a distressingly high incidence among young adults, including those of beyond average intelligence. The symptoms may shade into those of many other conditions so diagnosis can be difficult.
My son succumbed to an alleged “depression of adolescence”. In his second year at Oxbridge, where he had gone with a major open scholarship. He began cutting lectures and tutorials, shutting himself off in his rooms, and avoiding his friends. It did not occur to the college authorities that this behaviour could be due to anything other than idleness. They neither sent him to a doctor nor told us, the parents, but first took away his scholarship – then as that had no effect, sent him down – with 24 hours’ notice to us. They admitted – afterwards – that suicide notes had been found.
A family suddenly faced with this situation has, in my experience, two problems, and it is hard to say which is worst. The first is how best to cope with this strange, new member of the household whose moods alternate impossibly between sullen lying on his bed in the dark to wild fits of aggression, with social manners regressed to an almost animal level. The second problem is how to penetrate the obfuscating fog of hospital vagueness and evasiveness to obtain intelligible guidance on the first set of problems.
It is understandable that psychiatrists are chary of affixing a dreaded label too quickly, and in fact it was more than two years, after a round of several hospitals and a disastrous second attempt at Oxbridge, before a positive diagnosis of schizophrenia was made in my son’s case. But looking back, were those long months in which we could get no practical sense out of anybody, really necessary?
On almost any specific point on which advice was desperately needed – should he be persuaded to get up, dress, keep himself clean, encouraged to work or study, or just be left alone, which course is best for him? – we grew used to receiving from the doctors’ weary platitudes about showing “patience” or, from the hospital “welfare” side, surprised counter-questions – “Didn’t you ask the doctor that?” Failures in co-ordination and communication, seem to hang about the administrative management of schizophrenia almost like a grim parody of the condition itself.
A personal experience of this kind is inevitably subjectively coloured, but it has persuaded me to look into other cases with which I have no emotional link, and into the general question, and my conclusions are disturbing, particularly about the community provision for the victims of the condition.
Some schizophrenics make a partial recovery. Some stay in hospital for keeps. But thousands more in Britain (the statistics are unreliable) level off like my son at a low level of adaptation, physically fit and normal-looking to a casual outsider, but without application or anything that can be called will-power, and finding most inter-personal relations almost impossibly difficult. Drugs exist which palliate the grosser behavioural disturbances. They make life more tolerable for the sufferer and those around him, but it is hard to hit on a dosage which will not produce a somnolence as inhibiting to normal living as the excess emotion the drugs are designed to suppress or mask. Cases vary, but the very success of the drugs may only make it harder for the outside world to understand that behind the resulting apparent and outward normality the mental fragmentation is still there
The community problem chronic schizophrenics present is that while not ill enough to be made the subject of a compulsory order, they are incapable of looking after themselves without special guidelines and supervision, notably of either finding a job or, still more, of keeping one. Our son spasmodically looks for the job or occupation which, with one part of his mind, he wants. If he gets it he either does not turn up or he leaves it the same day. He has less sense of money than a child of 10. And each failure, with each successive employer, each inability to obtain references, answer letters, keep appointments, repay debts, makes the chance of anything better progressively more remote.
Schizophrenics tend to leave behind them a trail of people who righteously or despairingly, feel they have “done as much as we can” and it should be somebody else’s turn. I have quite a collection of sympathetic letters “hoping your son’s condition will soon improve” while regretfully saying “no” to some specific request.
Such reactions are all too intelligible, bearing in mind the maddening vagaries of schizophrenics and the difficulty of fitting them into any normal pattern of living. They excite none of the sympathy which surrounds other classes of the disabled. Even close relatives, let alone official bodies or employers, find it not easy always to choke back the feeling that there is something morally culpable about people apparently fit and rational who fling up work without excuse, and whose hands, as the years go by, increasingly close over any small gift of money with what looks like complacency but is in reality only a sad acceptance of their inadequacy.
As regards their ultimate disposal, if one must use the callous term, they present a problem which, it seems to me, the community and the authorities just are not facing. The priority matter is clearly rehabilitation wherever this is possible; a dual task of resocializing to enable them at least to scrape by in company with normal people, and simultaneously fitting them to do some simple job, possibly very much part-time but at least permitting them to live independently, if only at a modest subsistence level. Central or local authority provision for retraining geared to the needs of schizophrenics (or for that matter, former mental patients in general) is virtually non-existent.
The Industrial Rehabilitation Units set up by the Ministry of Labour are primarily intended for physically injured or handicapped manual workers. They are too few and scattered in view of travelling difficulties but, that apart, they concentrate on industrial retraining whereas many schizophrenics are only fit for routine clerical or similar work and are often so manually clumsy that to let them anywhere near lathes or power tools is inviting trouble. Worse still, the Industrial Rehabilitation Units naturally expect punctuality and the keeping of regular hours, both of them major hurdles to the average schizophrenic who after an initial failure seldom goes back.
To meet the resocializing part of the rehabilitation process are recent Act laid on local authorities the obligation to establish hostels to act as “halfway houses” for mental patients between their discharge from hospital and the hoped-for resumption by them of normal living. The aim, the provision of an interim sheltered environment, was admirable, but only a handful of local authorities have in fact done anything. And of those who have, some have interpreted their task in a grudging, obscurantist spirit.
The so-called halfway house set up by a wealthy county close to London is run on strict disciplinarian lines. New arrivals have it rubbed into them that their first duty is to get a job and get out. Use of the premises is forbidden during the day, almost as though intended to make the inmates feel rejected and walk the streets aimlessly, a favourite schizophrenic way of passing the time.
Pressure on schizophrenics to obtain occupation may be right for their own sakes and to prevent deterioration, but hectoring is counter-productive and the ambience which brings out their best is more that of an oversized family than an institution. For this reason the most successful halfway houses are those set up by such admirable voluntary bodies as the Richmond Fellowship whose staff must by now have as much experience of schizophrenic rehabilitation as anyone in the country. But there are tragically few of them.
When all is said and done a hard core will remain, possibly running well into five figures for the United Kingdom, who will never be capable of fending completely for themselves. No social provision exists for them, so their future is bleak. As parents die off and other relatives find it impossible to cope, the inevitable trend is for them to drift downwards to the welfare state’s bottomest sump.
A recent “Panorama” item gave a grim but accurate account of what is already happening to many: discharged from hospital to nobody and nowhere, feebly attempting casual work, neglecting their medication, failing even to collect their “public assistance”; the will-less slide to the doss house or sleeping rough with the meths drinkers and drug addicts, involvement with police and prison or, if lucky, back to hospital and starting the process over again.
Mental hospitals or institutions for mental defectives are totally inappropriate for giving shelter to the chronic schizophrenics, but where else can they go? What is wanted are small residential settlements where their basic needs, including protection from impossible stress, can be provided in a mutually supportive environment. Such homes would be cheaper than a corresponding occupancy of places in mental hospitals with their high medical and other overheads and where any attempt at normal living, to which they pathetically cling, is impossible.
Many of the necessary jobs could be done by the residents themselves; schizophrenics will often work well enough in their own fashion, if someone they like will tactfully “organize” them and is tolerant of their vagaries. There would also be scope for sympathetic local employers, not expecting too much, to give them a try. Such small communities would fill a gap in our social provision, avoid the friction and waste inherent in the present administrative neglect, and offer thousands in the hard core their best chance of happiness.
But the whole administrative set-up for dealing with this category of the disabled needs pulling together. The mentally crippled can almost be relied on to hurl themselves through any safety net devised to catch the ordinary disabled but this should be foreseen at the planning stage.
Unaided, they cannot be expected to cope with the bewildering maze of authorities which impinge upon their lives: out-patient departments, almoners, departments of employment, replying to letters, giving precise answers to incomprehensible questions – and none appearing to be in touch with the others. The ideal would be for some one authority to be given a co-ordinating role and designated as that to which schizophrenics can turn in all matters affecting them.
If this involves registering them that too should be considered. The scandalous fragmentation of responsibility between local authorities and the hospital service – the one wanting schizophrenics off the rates even at the cost of their occupying expensive N.H.S. beds, the other responsible solely for the medical aspects and unconcerned with any comprehensive after-care – should be ended. A unified national policy is needed."
- John Pringle