Argus title : Symbol of a need for care
A fortnight ago I wrote in this column about a man called Yannick, who died by heroin poisoning in Brighton. Yannick had a long history of mental illness, but also misused a cocktail of drugs. He would from time to time refuse prescribed anti-psychotic medication and self medicate with other substances. In May, following discharge from a local psychiatric hospital, he was placed in bed and breakfast accommodation and in November, following a final period of deterioration, he died. His mother believes he should have been hospitalised and she may well be right. South Downs Health NHS Trust, whose community patient he was, will make no comment on this. What is certain is that he should have been in more supportive accommodation. He needed safety. He needed asylum. According to the Oxford Dictionary, the word ‘asylum’ means ‘refuge’ or ‘sanctuary’. Nowadays it is a word primarily associated with political refugees at risk of human rights abuses. However, until a generation ago, most people would have understood the word very differently. Up until the 1980s most counties in England had large ‘asylums’ or mental hospitals which were used to house – often for long periods – people with intractable mental illnesses. Those in our part of Sussex were served by St Francis Hospital in Haywards Heath. Such institutions provided genuine safe haven and occupation for many vulnerable people who had been damaged by the world. However, there were many abuses. In the nineteenth and well into the twentieth centuries treatments were crude and sometimes brutal. Once they had been admitted, patients often found it remarkably difficult to leave. Asylums became dumping grounds for rebellious wives, abused children and adults and those who offended the moral codes of the time, such as single parents. In the 1980s the government began a programme of closure of large mental hospitals as they were now called. Huge tracts of land, often with working farms attached, were sold off, in many cases for upmarket housing. It was one of Thatcher’s first great exercises in public asset stripping. Health professionals seized the opportunity to close the old institutions and the ideal of ‘care in the community’ was born. Cautious voices calling for radical reform but not closure were drowned out. Long term patients from the large hospitals were decanted into group homes and there was an expansion of day care centres and community facilities for new ones. It was assumed that inpatient care was needed only for cases of acute psychosis. There have been moments of public anxiety about the policy of community care, most often when there has been a high profile ‘stranger’ murder by a mentally ill individual who, it emerges, ought to have been in hospital. On these occasions, despite initial widespread disquiet, the public has been swiftly (and correctly) reassured that such acts of violence upon strangers are very rare. The more hidden costs of the policy are rarely publicised, since they are borne in private and are rarely reported. This is because, apart from the patients themselves, it is wives, husbands, children, mothers and fathers who bear the brunt of it. It is they who cope with the stress of a caring for severely distressed relative. It is they who experience the embarrassment of bizarre public behaviour, who feed and attempt to keep clean people who have lost the capacity to look after themselves and they who are sometimes subject to threat, criminal damage and assault. Domestic violence is widespread in our society. Though it is not uncommon to hear references to alcohol as an exacerbating, if not precipitating, factor in domestic violence and child abuse, it is very rare to find any acknowledgement of the significant minority of cases which are associated with mental illness. I once met the wife of a man who regularly beat her when he was in the grip of psychosis. She recalled, during one such breakdown, pleading in vain with professionals to hospitalise her husband. He was paranoid and the attacks upon her were becoming increasingly severe. In desperation, she contacted the police who arrested him. She and the police expected he would be hospitalised. She was amazed to receive a phone call from a doctor who told her that her husband was a “sick man” and berated her for not allowing him back. He was not hospitalised. She took him back and the assaults continued. This may seem an example of unusually poor practice, but in fact reflects a commonly held view that families – and women especially – have a responsibility towards mentally ill relations which outweighs the state’s duty of care. The increasingly desperate requests for help by these carers can often be misrepresented as hysterical, disproportionate and even unbalanced in themselves. Clearly, professionals need to exercise caution in acting as families have requested. Sometimes the conduct of abusive parents and violent spouses has been the precipitating factor in the patient’s breakdown. However, when non-abusive spouses and parents express desperation, it is all too common, when resources and bed spaces are limited, for their opinions not to be taken seriously enough. Even the requests of patients themselves may be refused on the basis that they are ‘manipulative’, aggressive and uncooperative, unwilling to ‘engage’ or in the grip of addiction. And yet, such behaviours are quite likely to be symptomatic of deteriorating mental health. Even substance misuse is, according to the National Institute of Mental Health, “usual rather than exceptional amongst people with severe mental health problems..”. And though such behaviours are difficult to deal with, it is surely the responsibility of experienced health professionals to do so. For if they do not, families and the community will pay the price. Arguably, we have as a society become so fixated on the notion of care in the community as a ‘good’ that we have lost the will to provide asylum for disturbed people. We have allowed professionals and politicians to put a progressive theoretical gloss on cost cutting. In reaction against the weaknesses of the old system and abuses experienced within it, we have gone too far in the other direction. When I put this to Dr Michael Rosenberg, the Chief Executive of South Downs Health NHS Trust, he said he had no regrets about the closure of the old hospitals, and added: “The quality of care now is vastly superior to what we could offer in the big institutions. They were often grim, institutionalised and regimented and there was no privacy.” However, he emphasised that “high quality inpatient care is crucial to the recovery of many patients” and confirmed that no patient should be discharged to inadequate housing, adding: “There are excellent local examples of supported housing, but it is true there’s never enough. There is a gap in supported housing provision for people with dual diagnosis (of mental illness and addiction). It would be challenging and difficult to provide, but there is no doubt that it is needed.” I would argue it is essential that for our community to provide such specialist accommodation. It would save lives and be a fitting memorial to Yannick and others who have died. Shortly before St Francis Hospital closed down I attended a Christmas bazaar there and bought a piece of pottery. It is a squat little figure of a man in a green suit, a white shirt and a blue tie. He stands with his legs apart and his hands in his pockets, looking authoritative. However, when you turn the figure you see that the back of his head has been smashed in. It is clear that the skull was crushed with great care, rather than in a moment of anger, because hair has been carefully etched onto the whole of the scalp. An unknown patient made the little green man, painted it and glazed it, and then presumably gave it, or had it taken, away. I have often wondered who he represents – possibly a psychiatrist or father, the patient or madness itself. I asked the nurse on the stall how much it cost and she replied: “1p”. I said I thought it was worth more, so she charged me 2p. It was valueless to her, but is precious to me. The green man looks down on me as I write at my desk. I often think of the person who made him – just as I will now often think of Yannick. I hope that the first is safe and well – and that Yannick is at peace.