Who Cares?

Letters

Vol. 17 No. 7 · 6 April 1995

From Trevor Turner; Michael Neve

Several points need to be made in response to Jean McNicol’s admirable piece about the current crisis in community care for the mentally ill (LRB, 9 February). For example, it is not correct that acute psychiatric beds cost ‘almost twice as much as less expensive community care’. In essence it is all about paying people to look after people and if those carers are skilled nurses they will cost more than good-hearted but amateur ‘care attendants’. Of course, an acute psychiatric ward also has to have additional staff for the more disturbed patients, and requires medical and other support personnel, and one has to be prepared to take anyone for whom admission is required. Ex-patients who were once in hospital for many years, by contrast, require little in the way of support – perhaps a visit once a day to help keep a house tidy. But more dependent patients, with limited self-care skills, may require intensive help, perhaps up to eight carers for four patients. Even in the old asylums there were the ‘refractory wards’, that needed many more nurses than the rather indolent ‘chronic’ wards. In fact, it may well be that asylums are cheaper overall than community care, because of the economies of scale. Such economies are not available in many typical community hostels or residential houses, the average size of which varies between six and ten people. It is, however, generally accepted, and ‘user’ (to use the correct language) questionnaires seem to support this, that living in a relatively small building is more human and more humane. Simple things like the curtains in your room, the time of getting up, and when you eat are not institutionally rostered. But such choices come with a cost.

On the other hand, many patients refuse to go to hostels because they know they will only receive £10-£12 per week in pocket-money once all expenses have been met. They would much prefer to live in their own flat, possibly accumulating rent arrears and bills, but at least enjoying their own lifestyle. This may be unrealistic, but the desperation of mental illness makes it hard to plan ahead. In such circumstances going back into an acute psychiatric ward can be a considerable relief, not only because one may be treated for unpleasant symptoms, but because one continues on full benefit for a number of weeks, and bills may be paid off. An acute 20-bed ward in London costs between £500,000 and £600,000 a year to run, at least in terms of staffing, while a high-dependency hostel for eight people costs about £200,000. Simple arithmetic shows that 20 divided by 8 makes 2.5, and that 2.5 multiplied by 200,000 makes half a million. But community care needs the ward as well as respite care, for the inevitable relapses: should one charge those costs to the costs of the hostel or not? In the end there is little difference, and compared to the revenue-saving device of making someone homeless both are grossly expensive.

The Government’s response to all this has been that of the classic desk-wallah, organising ‘care plans’, in which the careful documentation and the continual meetings of many people are seen as the key facts. Thus the Care Programme Approach insists that all individuals brought into hospital with severe mental illness should have their needs identified, a key worker nominated and an aftercare plan drawn up to deal with those needs. This approach is formalised under Section 117 of the Mental Health Act, in which such meetings and plans are a statutory duty. Of course, if there is no ward clerk to organise the paperwork, and no spare key worker to take on yet another severely disabled individual, all the planning in the world will not help. How many patients/clients can one individual key worker take on, particularly in the inner city? It is thought that perhaps ten to fifteen people with chronic severe illnesses, liable to relapse, is a reasonable caseload, but even formally documented demand does not generate additional resources. Community nurses in areas like Hackney may thus accumulate fifty or more clients and crisis work overwhelms any continuing care.

Most recently in this regard the Government has decided to set up Supervision Registers. These are a kind of Schindler’s List in reverse, a form of stigmatisation of those most in need of confidentiality. Patients must be included on these Registers if it is felt that they are suffering from a severe mental illness and ‘are, or are liable to be, at significant risk of committing serious violence or suicide, or of severe self-neglect in some foreseeable circumstances which it is felt might well arise in this particular case’. The decision to put someone on the Register has to be taken by the responsible medical officer (that is, the consultant psychiatrist in charge of the case) after consultation with the mutli-disciplinary team. There is no formal mechanism of appeal, and again no additional resources can be identified by this procedure. Apart from begging the question of what is meant by the term ‘severe’ or ‘serious’ in this context, these Registers are liable to provoke considerable argument among all those involved. Patients or their families may well object to the processes of labelling, and stigma will be reinforced. Nothing else will have been achieved practically.

The most obvious answer, the community treatment order, is already working in Australia, New Zealand and some of the United States. In the latter it is called ‘outpatient commitment’, requiring a court order for its implementation. However, it seems that in Great Britain the European Convention of Human Rights may make such an order impossible to put into force, since to interfere with anyone’s liberty against their will, unless they are deemed to be actively insane, is regarded as illegal. Yet keeping someone stable in the community can only be guaranteed if regular medication is part of that process. Since the Sixties the basis of community care has been the availability of effective medication, the sine qua non of the business. Which does not mean that social support, personal relationships, and a psychological understanding are not also vital in psychiatric care, but if the patient/client suffers from formal thought disorder, secondary to impaired dopamine pathways, little can be done by the comforts of talking.

As McNicol has correctly pointed out, the homeless are not those individuals who have been long-stay patients in asylums: only 2 percent, approximately, of homeless individuals in London have been long-stay patients. However, while the asylum closures have not led to any deterioration in care for those transferred to support in the community, a whole population of ‘new long-stay’ has never got into the regular asylum system. These are the ‘revolving-door’ people, who have responded well to treatment, have been discharged, but have deteriorated once more. Usually this is due to a mixture of limited aftercare, lack of insight, and a refusal to accept continuing medication. Their numbers have gradually increased over the last ten to fifteen years, and Christopher Clunis was certainly representative of them. Asylum care is no longer available, so they wander around the system, a stage army of troubled individuals, hiding in the woodwork so to speak, and re-emerging when their behaviour becomes socially unacceptable. The overflowing acute psychiatric wards of the inner city are sad reminders of their plight.

Another aspect of the Clunis affair is the difficulty of clarifying a past history, when issues of confidentiality and a differential understanding as to the nature of mental illness pervade the processes of mental health work. Clunis told his social worker that he was on medication ‘because of drug abuse’. Understandably the social worker informed the Inquiry that he could ‘only go on the information he was given’, and was constrained by his inability to contact hospitals about any previous history. It is not uncommon for individuals to give different stories to different workers, depending on that worker’s background. This dichotomy is clearly signalled by the difference between the terms ‘client’ and ‘patient’.

Finally, there is considerable difficulty in keeping people in facilities deemed ‘medium secure’, a broad-church concept that involves everything between maximum security (i.e. Broadmoor) and the general acute psychiatric wards. The sheer expense of these beds creates pressure to move people downmarket – i.e. out of the acute ward. There is always another more acutely psychotic patient (or client) at the doorway, and nurses ruefully describe the dilemma of having to discharge patients as soon as they are coherent enough to be receptive to counselling and more interactive nursing care. These pressures are exacerbated by the requirement of the ‘catchment area’, whereby any hospital team has to concentrate on those who live in their particular district. Arguments between doctors and nurses about addresses absorb ridiculous amounts of professional time. Paranoid wanderers such as Clunis, who as soon as they are well disappear once more into the anonymity of urban life, are a common feature of psychiatric wards. In fact, the ordinariness of the peregrinations of Christopher Clunis is in itself terrifying.

McNicol has pointed out that ‘properly organised and funded community care should be able to protect the public and to treat and control a patient.’ Yet without the basic premise of regular medication such extra-institutional care is a shibboleth. Fears of mandatory community treatment revolve around images of men in white coats forcibly injecting people on the kitchen table, even though the Mental Health Act still insists that this can only be carried out in hospital. And most patients, once in hospital, accept the verdict of the law and are compliant with medication. Given a choice between living in their own home and being in hospital, the great majority would prefer to be out of hospital: if it is laid down by appropriate legal statute that they have to receive regular medication then that would become part of the deal. At present this can only be done for a month or two when the patient is on leave from the hospital.

Yet a kind of community treatment order does in effect exist. It is the restriction order, outlined in Section 41 of the Mental Health Act. A number of individuals already live in the community under this order, which can only be imposed by a judge in a Crown Court. Like Christopher Clunis, however, one has to have done something seriously dangerous to be the subject of such an order. It is a classic case of after the horse has bolted. Christopher Clunis, now reasonably clear-headed and under appropriate treatment, is locked up in Rampton but he would not have been a danger to the public at all if he had received regular medication. The outdated nature of the 1983 Mental Health Act is well brought out in The Falling Shadow, but getting a new Act will be extraordinarily difficult.

There is a general reluctance in Parliament to spend time debating issues of mental health. It takes twenty to twenty-five years for a new Act to come into force (in this century, 1930, 1959 and 1983), partly because of fears about civil liberty. In fact, MPs have included a special section (Section 141) for their own protection, whereby the Speaker of the House of Commons has to be notified, and a special report obtained from eminent physicians appointed by the President of the Royal College of Psychiatrists, if any Member of Parliament is ‘detained’.

Trevor Turner; Michael Neve
Consultant Psychiatrist, St Bartholomew’s Hospital, London EC1; Wellcome Institute for the History of Medicine, London NW1