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Archive for the ‘Schizophrenia’ Category

Dear Mr Farmer,

You have just been awarded a CBE. You have just been voted most admired charity leader of the year and seen the findings of the task force you led adopted by the NHS as grounds for hugely increased investment in mental health care. Your career as a charity bureaucrat is beginning to look rather spectacularly successful.

I remember the beginning of your rise to prominence. In the early 2000s you were recruited as director of public affairs by the then National Schizophrenia Fellowship, an organization founded by one, John Pringle, in 1971 to campaign on behalf of people afflicted with schizophrenia. It had formerly been run largely by parents and volunteers. In 2001 you and Cliff Prior, your boss (also since awarded a CBE), staged a palace coup, railroading a change of name to Rethink on the grounds that the presence of the word schizophrenia in the original title attracted stigma and deterred both potential funders and people who might actually benefit from the organisation’s help. I use the expression “coup” because only 14% of the total membership voted; those who favoured change amounted to only 9%. A majority of members did not like either of your proposed alternatives, Reason and Rethink, and only 5% of total membership approved of Rethink, the name chosen by the Board of Trustees. A member of NSF staff at the time told me that “the balance of power within the organization had shifted: the professionals had gained the upper hand.”

I mention this because it does not seem to fit very comfortably with your standard rhetoric about consulting the people most concerned, carers and those they care for: the sick, now known, I notice with horror, as “experts in lived experience.” But right from the beginning you have adopted the woolly and evasive jargon of political correctness with gusto. “The ethos of optimistic realism” was the empty slogan you coined in your campaign to change the National Schizophrenia Fellowship’s name. And there were many other semi-literate horrors you perpetrated in your campaign literature, which I kept for many years but have now, unfortunately, thrown away.

You are not alone of course in your enthusiasm for the new sub-Orwellian mentalhealthspeak. Doctor the language and all that is disorderly, unsavoury, difficult, embarrassing: all that tends to suggest that anyone might belong to a category of being that might be perceived as inescapably inferior must be eliminated. Thus, illness has been abolished; we are all on “journeys of recovery,” as the CEO of our local mental health trust wrote to me à propos of my son’s schizophrenia some ten years ago now. Now we are all more well or less well, just as we are less able to stand rather than unable to stand or just older rather than old or elderly. And if you query the sense of talking about recovering from afflictions from which recovery in the normal sense is not possible, you will be told that actually recovery does not mean what you thought it meant: it means rather whatever you want it to mean. In effect, if I say I have recovered or you say I have recovered, then I have.

Suspiciously convenient, one might think: sort of useful for bureaucrats who love positive outcomes and ticking boxes. Is this perhaps what you meant by the “ethos of optimistic realism”?

The losers in all this: the people like my son who suffer from schizophrenia and other serious mental illness. You of course do not talk about mental illness any more. Your talk is all about mental health problems: how one in four people in the population will suffer from a mental health problem in the course of a year, which is a statistic that only makes sense if taken to include Monday morning blues, disappointment in love, missed job opportunities, bereavement and many of the things which through most of human history have been regarded as routine life experiences. You talk endlessly about psychological services, about making talking therapies more widely available. Very likely these things help with the kind of existential problems life throws in our paths… But, even in France, where talking therapies have been in regular use with schizophrenia, psychiatrists will tell you they rarely work in psychotic illness.

You wheel out Stephen Fry and Jonny Benjamin as examples of how people can recover from psychotic illness. I do not in any way underestimate Stephen Fry’s suffering when he is ill, but there is plenty of evidence that people with bi-polar disorder can function very well between bouts of illness. Even Jonny Benjamin – admirably courageous young man that he is – is very much the exception rather than the rule where schizophrenia is concerned.

Your achievement in changing the name of the National Schizophrenia Fellowship to Rethink has ensured that for ten years and more the staff have scarcely allowed the word schizophrenia to pass the barrier of their teeth. Terry Hammond, one of the organisation’s trustees, has himself written: “Schizophrenia is fast becoming the neglected illness and all this is happening in the name of recovery – empowerment – independence…I believe there is no comparison between the life-changing effects caused by schizophrenia and other forms of mental illness…Most people who develop schizophrenia do not go on to live ‘normal lives.’ Most are unable to work. Few get married or successfully socially integrate nor do they become prime ministers, spin doctors, comic geniuses or award-winning actors…too many policy makers and politicians have been taken in by the ideological claptrap which has been preached over the years by the mental health extremists…empowerment, independence, normalisation, recovery: all worthy aspirations, yes, but in the hands of politicians and Primary Care Trusts, they are simply excuses for delivering community care on the cheap…most of those who are campaigning at this level are individuals with depressive and anxiety disorders – not schizophrenia.”

John Pringle in the 1971 letter to The Times that led to the foundation of the National Schizophrenia Fellowship wrote that, while some people may make a partial recovery from schizophrenia, thousands “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… they are incapable of looking after themselves without special guidelines and supervision…”

They need help even with the daily routines of life and they are not getting it.

When are you going to acknowledge your debt? Your career has been founded in a sense on schizophrenia, but through your uncritical espousal of the fashionable discourse of the care services you have contributed in no small degree to silencing the few voices that once spoke out for schizophrenia.

 

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Ginsberg HOWLED once. It’s time we HOWLED too. But how to HOWL so that anyone hears? Lots of influential gay men HOWLED when AIDS was cutting swaths through their ranks. Result: massive amounts of money were spent on research and they came up with an effective treatment. Now it’s the turn of Alzheimer’s. We are all going to get old, we have all got ageing parents and relatives. Result: the government pledges to spend vast amounts on research, which sooner or later will produce an effective treatment. But schizophrenia… Basically only those personally affected are even aware of its existence and those organizations supposed to champion our cause spend their time and money pretending that mental illness is something practically everybody experiences, so what is the big fuss? Nutters are no different from anyone else, because we are all nuts. The only problem is stigma et cetera. Baloney! If they had spent half the money spent on AIDS over the last thirty years, we might have got somewhere.

Nothing changes. We have to say the same thing over and over again. I am tired of hearing myself. It is depressing.

What prompts this? Most immediately, the mental health charity Rethink’s annual general meeting, which I attended, briefly, a few weeks ago. Okay, it is an occasion for a lot of people in the same boat to get together, the activists, especially, the selfless people who run the support groups, without which, and its advice line, Rethink would be a waste of time. There is comfort obviously in an annual get-together.

But the organization itself: what does it achieve? For the first thirty years of its existence it had edge; it was run by and for people who had schizophrenia in their lives, every day. They knew where it hurt. Okay, it became too big for a bunch of committed amateurs and volunteers to run, but the palace coup that put a gang of career-minded professional bureaucrats in charge in 2001 emasculated it. Removing the word schizophrenia from its title gave their show away: showed exactly what they were about: not ruffling feathers, raising money to pay for an attractive career path, becoming an establishment organization that could sit down with government agencies as an equal: stuffed shirt to stuffed shirt.

And for thirteen years, what have they done? Turned themselves into another version of MIND and spent relatively huge amounts of money bleating about stigma and employment. The usual p.c. agenda: must not offend, must not do or say anything that suggests that anybody might in any way belong to a subordinate category. Thus, we have well-being and recovery instead of illness; stigma, lack of employment opportunities and victimhood  instead of the devastating effects of an illness. And, besides, we are told over and over again: one in four people in this country will suffer from some kind of mental health problem in the course of their lives. Which might be the case if you include grief, divorce and chronic piles in the same category as schizophrenia, which, for anyone who knows anything about schizophrenia, is absurd. Nuts and not nuts, we are all equal. And by such a sleight of hand as this you can organize anti-stigma events and put Churchill in a straitjacket with a good conscience and think you are achieving something.

Have thirteen years of concentrating on this stuff contributed in any way to helping those whose minds are so disturbed by hallucination and delusion, by loss of concentration and the cognitive power they were born with that they cannot organize the most basic routines of everyday living: sensible diet, cleanliness, home-making, tenancies, banking, using public transport, emptying the dustbin, making and maintaining friendships, filling their days with anything other than alcohol and tobacco, never mind things that most of us take for granted like marriage and family, employment…? Not that I have noticed.

Have they helped put pressure on the powers that be to provide anything resembling the kind of care people in such need require? The kind of care that we are told we can indeed expect from them. A safe haven in a hospital bed at times of crisis? Sufficient personal care when out of hospital to keep you off the streets, out of debt, away from noxious drug abuse…? Not that I have noticed.

In twenty-five years I have not met a single person suffering from schizophrenia who has recovered in any sense of the word that I recognize. Of course the illness itself makes people afflicted by it extremely difficult to deal with; that goes without saying. I know people who manage better than others, but recovered? Forget it.

For thirteen years the word schizophrenia has scarcely been allowed to pass the barrier of official teeth, since that 2001 palace coup when the then-CEO Cliff Prior, now ascended to ever greater heights in the Orwellian world of professional caring and rewarded with CBEs, delivered the CEO’s address at the annual general meeting without even mentioning the word schizophrenia. Now, suddenly, curiously, mysteriously, schizophrenia is all the rage again. At this  year’s AGM the CEO could hardly speak for falling over schizophrenias. The organization is as pleased as Punch with itself for having rediscovered schizophrenia, apparently through the findings of its schizophrenia roadshow which toured the country last year and discovered that rather a lot of people felt like me and the people I know: that schizophrenia is indeed “the abandoned illness,” as they are rather smugly calling the report of their roadshow’s findings. Perhaps they will soon admit that stigma has little to do with it and that the problem is neither fear nor ignorance but the illness itself. Perhaps Cliff Prior might even be induced to return his CBE as having been won somewhat fraudulently, to say nothing of Paul Farmer, now CEO of MIND, who also owes his position to the wrecking of the old National Schizophrenia Fellowship – his contribution being a barely literate campaign designed to bully members into accepting the intended coup. I see that Mr Prior’s c.v. makes rather a lot of his boss role at Rethink and its status as a “membership based advocacy organization.” I find that a bit rich as I have in my possession a letter from someone on the Board of Trustees at the time who told me in confidence that there was very little of democracy about the way in which he forced through the changes he wanted in defiance of members’ wishes.

Water under bridges. They have all advanced their careers and made their marks as selfless champions of the oppressed and afflicted…while the oppressed and afflicted and those who love them are still mopping up, wrangling with the Care Teams and Foundation Trusts, trying to get housing, trying to clear debts, trying to get access to information…

Wouldn’t it be nice if one of them could come forward and say openly: “Yes, we did rather push schizophrenia into the background. We  recognize that we made a mistake and now we are really going to try to do something about helping to improve the treatment and care of those who suffer from this illness.”

These are committee men: they are into procedures and minutes and not rocking the boat. Orthodoxy is the only answer, as a slogan I once saw on a wall in Athens proclaimed.

I stood up after the CEO’s  address at the AGM this year and asked whether Rethink might consider running a campaign to win tobacco prescriptions on the NHS for schizophrenia patients, all of whom, practically without exception, smoke heavily and have to spend a disproportionate amount of their benefit income on the habit. The CEO replied predictably that, while not wishing to appear a health fascist, he thought it better to stick to their policy of trying to persuade people to give up smoking.

Of course, what else would he say? But it is precisely this kind of “respectable,” “official” response that underlines the breadth of the gulf that separates the bureaucracy of “caring” from a true understanding of the daily reality of the illness. Smoking kills, is the official, rational, universal line of the responsible classes. How could we possibly be so un-p.c. as not to support such a notion?

But schizophrenia-sufferers live on benefits and cigarettes cost up to £8 a packet. Their lives are difficult enough as it is. Why should they be made to suffer more and more as the cost is pushed up, when smoking is one of their very few distractions, pleasures? You can marshal all the good intentions in the world and you are not going to persuade my son and many like him to stop smoking.

A  friend’s brother recently stopped taking medication, disappeared from home and was taken in by a local convent, luckily for him. But he disappeared again, only to be picked up by police while hitch-hiking. He is now under Section in a hospital in a town where nobody knows him. His sister has been trying to find out what is going on. The hospital refuses to engage with her. Any attempt to talk to a responsible doctor, discover when and how they might be planning to discharge him, is countered with a formal letter stating that under Article 8 of the European Convention ….they are not allowed to give any information without the patient’s consent…

She has now discovered, via the one visitor the brother will allow, that he has been diagnosed with cancer. His closest relatives are not allowed to know anything. As is in the nature of the illness that is schizophrenia, his paranoia has merely been reinforced by this  news and he refuses to believe the diagnosis. His relatives are confronted by a wall of silence on the part of the medical and caring staff. They do not know how severe the cancer is, they do not know what the prognosis is, nor what treatment is proposed. It is not hard to imagine their distress.

Who the hell is going to look after an impossibly tiresome relative if not family? My friend is not asking for the revelation of confidential information. Does the law not allow for the use of a little common sense, discretion, on the part of the doctor? If it does not, it is an ass and should be ignored.

Consulting with carers, getting someone “sectioned” in good time, finding a bed in a hospital nearby…You would think that by now these were things that we could count on. Oh yeah? The police can only spare officers to take part in Sections on two days a week. Don’t go crazy on a Sunday! And when finally they turn up and all the neighbours have been alerted by the commotion, it turns out they have got the wrong warrant…

I hear such stories all the time. Carers cold-shouldered, not consulted; relapsing patients not taken in hand in time because of pussyfooting nonsense about consent and rights.

And caring is a lonely, always anxious and sometimes frightening, business. What about us?

Happy New Year!

I have written about my experience of schizophrenia in a book called Schizophrenia: Who Cares? – A Father’s Story. You can find details at http://blackbird-digitalbooks.com/news/schiz3web/

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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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