Posts Tagged ‘schizophrenia’

How many times does one have to say these things?

In 1970 a man called John Pringle wrote a letter to The Times, describing the plight of his son, an undergraduate at Oxford University, who had begun to suffer from schizophrenia.

I will quote from it, for, forty years on, it seems to me, not a lot has changed.

“Failures in co-ordination and communication, seem to hang about the administrative management of schizophrenia almost like a grim parody of the condition itself.”
“Some schizophrenics make a partial recovery. Some stay in hospital for keeps. But thousands more in Britain… 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…”
“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…”
“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…”
“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.”

I have no systematically garnered statistics to quote from, but I have lived with my own son’s illness for more than twenty years and have been in touch with many dozens of others suffering in the same way. I do not know whether they are a minority or a majority; I have no idea what their numbers are, but my experience suggests that there are significant numbers stuck, as John Pringle described, in that kind of psychological no-man’s-land, “at a low level of adaptation…incapable of looking after themselves without special guidelines and supervision…” And most definitely not recovered, in any normal sense of the word.

For the first ten or fifteen years of my acquaintance with schizophrenia, no one talked of recovering from the illness. Then, quite abruptly, six or seven years ago we started to hear about the Recovery Approach. The chief executive of the outfit supposedly responsible for looking after my son, literally from one week to the next, ceased referring to “your son’s illness” and spoke only of “your son’s journey of recovery.”

Presumably the expression comes from the same stable as “visually impaired” (blind), “deferred success” (examination failure), “less able to stand” (handicapped or disabled): that genteel virtual world from which all unpleasantness and nastiness, all categories that might be said to “condemn” people to permanent secondary status have been banished, by decree of the well-intentioned politically correct. All shall have prizes. And we know by now where good intentions lead…

I do not think it can yet be said that the failure to look after schizophrenics is a direct consequence of this evasive rhetoric, although in combination with the other orthodoxies of the day, empowerment, personalisation, consent and autonomy, it certainly is not helping. For, if everyone is in the process of recovering, where is the urgency? And the fact is, schizophrenics are not looked after. Does anyone keep an eye on their diet? Does anyone help them keep themselves clean and presentable, do their laundry, clean their flats or rooms, have a regular medical or dental check-up, look after their money sensibly? No.

Oh, they will tell you, we now deliver x-number of intensive customised services in the community. Well, that may be so, but it is not much comfort to the many people who are nonetheless not receiving them. And when you consider that an unwillingness to admit to illness in the first place or engage in any way with anyone is one of the most notorious characteristics of schizophrenics, a merely passive ‘offer’ is unsurprisingly not much use.

And in the UK at least schizophrenics no longer have any advocates. The organisation John Pringle founded, the National Schizophrenia Fellowship, was taken over by professional charity bureaucrats and renamed Rethink because, it was argued, the word schizophrenia attracted stigma, as if that were a major concern for people “incapable,” as John Pringle pointed out, “of looking after themselves without special guidelines  and supervision”;  as if changing the name of your affliction made any difference to the degree of your dottiness, unhappiness or loneliness.

Rethink, bless them, have embarked on a tour of the land to gather information about how schizophrenics are treated. They have called it a Schizophrenia Commission – pretty much the first time in ten years they have allowed the word schizophrenia to pass the barrier of their teeth, which we hope is a good sign. There is no doubt this is a good idea, and about time too. But what will they come up with?

The Commission consists of some eminent psychiatrists, some carers, a newspaper health editor and some “experts in lived experience.” What are they? you might ask. Well, they are what, in pub parlance, used to be called nutters. “Recovered” nutters, to be more precise. Their presence on all such occasions, on all such boards and in all such situations, is now de rigueur. Their presentations normally open the proceedings. No matter how peculiar their stories, no matter how peculiar what they say, they are received with extreme deference and gratitude, indeed one might almost say reverence. As it were, the word of God.

We know what the message is; we get the point. There is hope. People can get better. Look at them and, often, I can’t help feeling, “Look at me.” They have websites; they have published books, well, in some form or other… And good for them. But this does not mean that everybody can “recover” in any meaningful sense and it often does not mean, as far as I can see, that the “recovered” have themselves recovered in anything other than a very precarious manner. You could say, I suppose, that the mere fact they can stand up in front of an audience and make a speech is an achievement not many schizophrenia-sufferers could manage. How far this is due to anything one might sensibly call “recovery” rather than a sign that they were not so ill in the first place, I don’t know.

And their opinions – frequently, anti-medication, anti- the use of sections or any form of coercion, even anti-diagnosis – seem to me to be given far too much weight in the debate about how to deal with mental illness.

Schizophrenia is not “a mental health problem,” in the sense that, as we are told ad nauseam, one in four people in this country will suffer from a mental health problem at some stage in their lives. It is a different kettle of fish: it is a serious illness, the more serious for the fact that it damages, even destroys, people’s ability to process the ordinary sense data, practical and social requirements of everyday life in a normal, rational way.

Large numbers of people suffering from schizophrenia – majority, minority, it does not matter – need hands-on help, assertive, interventionist help, not “services” that will be “delivered in the community” if they are prepared to engage with them. And they do not get it.

Outfits like Rethink – John Pringle’s organisation, founded to help schizophrenics – actually contribute to their neglect by banging on about Recovery and organising anti-stigma marches. They encourage the powers-that-be – service-providers or whatever the horrible jargon is – in their endeavours to cut costs, by closing hospital beds and doing away with psychiatrists’ posts. For, where is the urgency: all these people living in communities – what a lie that is – happily bumbling along on their journeys of recovery?

And for those of us who every day have to deal with the disappointments, loneliness and misery of our sick children’s broken lives, who see what schizophrenia really means for thousands of people, who see that for them recovery is meaningless nonsense, all this sunny talk merely deepens our despair and even the toughest of us are forced to ask sometimes: what have I done wrong or not done, that only my child is failing to reach those uplands where the anti-stigma marchers and Recoverees all frolic in Elysian bliss?

PS – How about campaigning for free cigarettes by NHS prescription? All the schizophrenics I know smoke like chimneys and why should not they? They have few pleasures in life. Besides, there is evidence that the nicotine is also   a form of self-medication. They are all poor. Why should they be penalised by the interfering do-gooders who have pushed cigarette prices to £6 or so for a packet of twenty?

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Since I was interviewed by BBC Radio 4’s All in the Mind on June 15th and 16th (click on the name to listen online), there has been a big response from people, both buying the book (Schizophrenia: Who Cares? – available for purchase on this site if you click on “books” in the sidebar) and sending me messages, telling of their own troubles and how similar their experience has been to mine. Some of the tales have been devastatingly tragic and it is hard to know what to say. But my experience is that all of us who find ourselves in this same boat share pretty much the same experiences, the same griefs, the same terrors, the same foolish moments of hope, the same anger and frustration at the almost total failure of the “care system” as we know it in this country to provide for our sick children and relatives.

I don’t think the failures are due to malice – at least I hope not – but rather to an ill-thought-out, ill-coordinated and ill-funded system. Mental illness, even severe mental illness, is not on the whole life-threatening but it is most definitely life-destroying: it ruins people’s ability to maintain ordinary, expected relationships like friendship, marriage, parenthood; their ability to hold a job, of any kind, never mind one that is commensurate with their intellectual capacity or education. It ruins their ability to maintain a decent, attractive, comfortable home for themselves; to go to a shop and buy even cigarettes without the risk of some serious misunderstanding or misadventure.

People suffering from schizophrenia need help, not empowerment. They need to be looked after and by and large they are not. Professional care workers have their hands – and minds – tied by the idiotic rhetoric of political correctness: can’t do anything without the consent of the “client.” It is all about the inviolability of people’s rights, about not using language that might possibly be considered to consign people irredeemably to categories of inferiority by calling them fat or bald or, even, ill. For illness has been abolished, people! It is now all about well-ness; we are all more or less well and certainly not, Heaven forfend, ill! Recovery is the name of the game. And if, like me, you think recovery means getting back to the status quo ante and that, therefore, it does not really apply where schizophrenia is concerned, you will probably, like me, be referred to the website of the Social Care Institute for Excellence (www.scie.org.uk/publications/positionpapers) where you will learn the error of your ways: “recovery” means, in effect, if I say I am not ill, then I am not.

Yet another splendid theoretical excuse for not intervening and helping the one category of patients who really do need to be taken in hand, assertively and enthusiastically,  and helped.

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