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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