FP: Please tell us about your motivation for writing the book.
TS: I wrote the book for several reasons. First, I wanted to tell the world something about schizophrenia. Whether the world will pay the slightest bit of attention is of course another matter! Most people, unless they have had personal experience of the illness, have no idea what it means, what it does to people, what a devastating and truly tragic effect it has on the lives both of those who suffer from the illness and those who love and try to care for them. If they have thought about it at all, they think it has something to do with going berserk and wielding axes or having some kind of what they think of as a split personality.
And I decided to tell my story because I knew, after attending meetings and listening to other people’s experiences for twenty years, that my story was everyone’s story: we were all in the same boat. I also wanted to expose the hopeless inadequacy of the provisions made in our society for the care of people with schizophrenia: the ridiculous, illiterate and contradictory nonsense talked by those supposedly in charge of the system and its continuing failure to provide the things that the government told us we could expect from it. For twenty-five years we have been told that the involvement of carers was of primary importance. Am I informed of the dates of Care Plan review meetings? Have I met the “new” consultant who has now been in charge of my son’s Care Plan for three years? No, and that in spite of the fact that I have bullied and pushed and agitated for more than twenty years.
My local Trust is now planning to close half of its remaining in-patient facilities on the grounds that Care in the Community has been so effective that they are no longer needed. A likely story, I say, when Care in the Community for my son means a fortnightly injection and an occasional cup of coffee with a CPN. Does anyone know what he eats, when he last changed his underclothes, his bed sheets, what is growing out of his sink? Actually, he is doing pretty well – at last, but I don’t think the “system” can claim much of the credit.
FP: I know you would like to reply to some of the comments I made in my review
TS: Yes, firstly, I am aware that some people with schizophrenia “can hope for a much better outcome…” Rethink, for one, never ceases to tell us so. But while I quite understand that there is no point in being only pessimistic, I feel strongly that the people who “can hope for a much better outcome…” are lucky, are a minority, and, in a sense, are not really the ones we need to worry about. My experience – not systematic, I admit – suggests that the majority languish somewhere between more or less stability and more or less acute illness: in a kind of limbo, where many sort of manage without coming anywhere near leading the kind of life that could have been expected for them before the illness. They are, in short, the people whose plight prompted John Pringle to set up the National Schizophrenia Fellowship, ancestor of Rethink, in 1970. These are the people I am concerned about; these are the people who need looking after. These are the people who truly suffer from schizophrenia and I do not see any evidence that their numbers are diminishing. Rethink still has some 150 support groups and, I believe, some 8,000 members, most of them inherited from its days as the NSF. If the chances of good outcomes had significantly improved, I do not think we would still be attending these groups.
It was to highlight the plight of these people that I wrote the book. Responses from readers largely confirm that my story is, as I had suspected, also theirs. And given that there is as yet no cure, no truly effective treatment, for the illness, this is surely what one would expect.
You express surprise at my lack of sympathy for the vulnerability of ethnic minorities. Vulnerability to what?
If it can be shown that ‘Albanian-ness’ is in some significant way relevant to a person’s susceptibility to schizophrenia or to the way in which the illness should be treated in that person, then I have no objection. As far as I know, no one has been able to show that this is the case. My strong impression is, on the contrary, that talk of ethnicity and minorities in this context is merely part of the ill-thought-out and currently fashionable discourse of political correctness, aka the positive discrimination/affirmative action movement that derives from the work of the philosopher John Rawls, and where the actions of mental health bodies and local councils are concerned amounts to little more than box-ticking designed to establish “progressive” credentials.
And what is ethnicity? What boxes do you have to tick in order to constitute yourselves an ethnic minority?
My children are half French? Does that count? Do the substantial number of well-qualified, professional French people now working in London count? What about the large number of Americans living in England? Does a well-known actress brought up in England by an English mother but sired by a Nigerian father count? Are the Japanese ethnic? The Poles? Was I part of an ethnic minority when I was living in Greece or in Libya?
In my view a lot of nonsense is talked about ethnic and cultural diversity, in the main by people who speak no other language than English and therefore can have little understanding of cultural difference or else have vested interests in exploiting their status as minorities for their own purposes. Vide VS Naipaul and Wole Soyinka on these matters.
I think my cultural viewpoint allows me to see rather further than many! As a classicist I had to study the literature, history and philosophy of the ancient world. I have been involved since my teens in France and Greece. I speak both languages; I have lived and worked in and written about both countries. I have been married to both French and Greek wives. I have been a school teacher in London comprehensives as well as in Greece and Libya. For many years I have had to eke out my earnings as a writer with painting and decorating and other manual work. I speak pretty reasonable Italian and manage in Turkish, Russian and Romanian. I have hung out in the sheepfolds and harbours of the Balkans and eastern Mediterranean for much of my life… I have known schizophrenics from France, Greece, America and Israel. I have French psychiatrist cousins with a schizophrenic son…
FP: In response
One of the difficulties when talking about groups of psychiatric patients and their outcomes is defining about who you wish to draw conclusions. Another is that what counts as a ‘recovery’ can be different to different people. However attempts have been made, and when you sum up the work done so far – according to the textbook on my knee – then: ‘The prognosis of schizophrenia is very variable. A review of treatment studies suggests that 15-20% of people with schizophrenia recover completely, about 70% will have relapses and may develop mild to moderate negative symptoms and about 10% will remain seriously disabled’ (Kumar and Clarke 2009).
The question is then how to have a mental health system that can cater for such diversity of outcomes. As you identify, a mode of operation based on recovery is of little use to someone who is struggling to maintain an independent life, but at what stage should healthcare professionals decide that a paternal approach should be taken? Doctors and other health care professionals have become very reluctant of late to make any judgments on people at all. In my view this must be seen as a reflection of historical criticisms of psychiatric treatment. Mental health practitioners and psychiatrists in particular have been heavily criticised for allowing patients had little involvement in their care. And, more generally, it is hard to think of many professions that have had an ‘anti-‘ movement against them. In addition we live in an age of empowerment and entitlement so one could argue that the prevailing treatment approaches inevitably reflects this. There is also the issue of fostering dependency on the mental health system, something else the mental health system has been accused of in the past. For instance from something I read recently:
‘The mental health system perpetuates the needs of those who enter it, so that it is difficult to exit from the system: patients are transferred from one compartment to the next, with little effort being directed toward developing a functional independency.’ (More is more and less is less the myth of massive psychiatric need British Journal of Psychiatry (1985), 146, 164-168).
Your viewpoint on charities is very interesting. With year on year growth and influence, many charities have internalised the logic of the marketplace and have begun to see themselves as competing for market share. Working for a charity has become a career path, and charities have increased responsibilities to their staff and so on. I feel that this has a lot to do with the broadening of remit that you identify with particular reference to the National Schizophrenia Fellowship. A wish for a broad appeal may also explain why campaign targets – stigma, fear and prejudice – have superficial appeal, but lack nuance. I share your view of the fallacy of ‘1 in 4’ of us having mental health disorders, which is part of the same ‘inclusionist’ approach. Overall I would agree that there is a place for an organisation to campaign for the interests of schizophrenia patients solely and it is a shame that this no longer exists.
It is generally accepted in psychiatric circles (with an epidemiological basis) that some ethnic minorities and immigrants have higher rates of schizophrenia and higher rates of admission to psychiatric hospital. Even if this wasn’t the case, low income groups – of which ethnic minorities form a substantial part – are major users of NHS services across the board so it is not surprising that mental health services deal with a lot of people from ethnic minority groups. At any time, a psychiatric ward in London will house citizens of multiple different nations.
As you know from your travels people from different communities may have very different viewpoints and requirements. With regards to these needs opinion formers and regulation enactors have fallen in with the ethos of multiculturalism where the prevailing wisdom is that we should recognise and accommodate difference so far as is possible. So, whilst it’s true that that what qualifies as an ‘ethnic minority’ is arbitrary, from a pragmatic point of view people whose English language skills are poor or whose cultural norms are significantly different to those of the majority population are allocated the most resources. It is these people who I refer to as ‘vulnerable’ by which I am ultimately referring to their risk of not getting adequate treatment by virtue of their inability to negotiate NHS care structures. You may be right that we overdo our accommodation for people from cultures outside the UK majority and if so this is likely to be a reaction to past neglect. There has been a lot of criticism of the multicultural approach, but the other extreme is to treat everyone the same. I’d be interested to know where you would draw the line: for instance it was reported in 2006 that the NHS spends £100m on translation services yearly. If we one were entirely ‘mono-cultural’ then this presumably would not be required.
In response to ‘how do you cater for a diversity of outcomes?’
I don’t know, but I have always felt that a firm, warm, persistent, mildly assertive taking-in-hand of the patient – like a good PE teacher – from the earliest onset of the illness would be more likely to promote a successful outcome than the current holding-back, can’t-do-anything-without-the-patient’s consent approach – the approach revealed in the use of the term client rather than patient. How many cancer “clients” do you know?
If “toxic environmental factors” play a role in schizophrenia, then surely it matters where and how people live. They need decent accommodation. I would not want to live in most of the sheltered accommodation that I have seen. And if they need help in keeping clean, eating properly, keeping physically healthy, having some kind of social life, they should get it. How can leaving someone suffering from an illness like schizophrenia to live in squalor and isolation possibly be good for them? And yet that is what happens – all too often. Years ago a social worker – one of the few in my experience who took her job seriously – made a needs assessment for my son. She recommended sending a cleaner in, signing him up for meals on wheels and a number of other things. Did he get any of it? Of course not. Yet that is the kind of help many patients need.
My local Foundation Trust, justifying a huge budget cut a couple of years ago and aware that recalcitrant “clients” might lose out, made much of its new assertive outreach team. After my son stood them up on a couple of occasions, they said they would not keep him on their books. How assertive was that? Don’t we know that people suffering from schizophrenia are not the most enthusiastic recipients of treatment? I was reminded of Denis Healey’s remark about comparing being attacked by Geoffrey Howe to “being savaged by a dead sheep.”
In response to ‘accommodating other cultures’:
There is a lot of talk in the caring professions about accommodating a diversity of cultures, but I am not sure what is actually provided in practical terms apart, perhaps, from the provision of a prayer room in hospitals and the translation of documents into various languages. And, going by my local experience, there does not seem to be any logic to that: one day French is on, the next it is off; the same with Greek, the same with Albanian, the same with Turkish… Who is taking these decisions and according to what criteria? As to the question of whether it is necessary or worth the expense… Does it really amount to anything more than Jack-Hornerish ticking of the progressive boxes: “Oh what a good boy am I!”
And if diversity of culture is to be such a cherished part of our way of doing things, might it not make more sense to suggest to the Bangladeshi community, let’s say, that they establish a body of English-speaking volunteers to whom their non-English-speaking…are we allowed to call them “compatriots,” may turn when need arises? No one, I have to say, when I lived in Greece, France or Libya, ever pushed a leaflet through my door telling me I could apply to have official documents sent to me in my native language.
The little I know of it suggests that the problem in accessing mental health services for people from other cultural backgrounds is not language so much as culture, that is, attitudes to mental illness. Admitting to the existence of “madness” in the family is to bring shame on it; it is something to be hidden. This has certainly been my experience with Greece, with fathers of sons, in particular. Sathnam Sangheera’s moving book about growing up in what was essentially a Punjabi Sikh village community in Wolverhampton, The Boy with the Topknot, throws interesting light on this; both his father and a sister suffered from schizophrenia, something he himself did not realize until well into his twenties. Somewhat paradoxically, one might think, it also suggests that coping with illnesses like schizophrenia in the bosom of the clan, a large extended family, may well be far more effective than our more clinical and professional approach.
FP: In the book you’re critical of the standard of many of the staff who are employed by the NHS, in particular you write:
‘When they can, the bureaucrats always claim a long history of involvement in mental health. But I am not much impressed by the quality – intellectual, in particular – of the people who work ‘in the field of mental health’. I am not referring to the medical staff: they have had to undergo a rigorous education. It is the other services that I have my doubts about. First of all, mental health is a pretty unglamorous, unrewarding and difficult area to work in. There is a very high proportion of black immigrants with poor language skills – that is to say they cannot speak English intelligibly – employed among the lower echelons. This is not because blacks are especially gifted or particularly attracted to the caring professions; it is because these are jobs that better qualified people do not want and, being in the public sector, have at the same time a certain cachet or respectability especially for people who come from cultures where being a public employee and wearing, as it were, the uniform of the state gives a certain status and power. There are certainly some saintly people among them, people with real compassion, but when they move, generally for career reasons, into management and administration their shortcomings are quickly shown up.’
Whilst I don’t think that everyone who works for the NHS is a genius, nor that people are never promoted beyond their ability, are you not being a bit harsh here? The fault here is that, as a society, jobs in the NHS, and especially some in mental health care, are not valued and do not always attract the highest quality staff. And not only are they not valued, but the UK does not train people for these jobs in sufficient numbers, necessitating recruitment from abroad. Shouldn’t we be grateful for the people who are prepared to do the jobs rather than admonish them?
TS: I can see that what I have said might be considered harsh by some. There is, however, truth in it and I do not see that skirting around the truth for fear of offending people, as is currently the fashion, helps anyone. I believe that, if in the long run services are to be improved, we have to be allowed to describe things as they are. We have to know where we are starting from.
On a slightly different point: we hear a lot about ethnic and cultural sensitivity. It does not, however, seem to have occurred to anyone that it might be rather a shock to the cultural system and therapeutically not very helpful for a well-educated young English man, arriving in a psychiatric ward for the first time – a pretty frightening experience in itself – to find himself in the care of people who are not English or European even and come from a very different cultural background, with all that means in terms of attitudes to politeness, privacy, the status of the sick and mad and so forth. I remember a ward manager from Mauritius telling me once that he wished he had some white nurses on his staff.
FP: Can you tell us the reactions you have received to your book?
TS: I have had several dozen written responses to the book, in the main from parents and relatives of people with schizophrenia, but also from sufferers, psychiatrists, GPs and people both teaching and studying on nursing degree courses. The vast majority have written to tell me that my story is their story. Often the emphasis is on the sadness and horror of their experience, but many have also found the care system woefully inadequate and many are infuriated by the “politically correct” attitudes that prevail. Some students wrote to tell me that a lecturer had told them off for thinking of their work as “nursing” and “caring,” on the grounds that such terms implied a patronizing attitude to…well, their “clients,” I imagine, hardly their patients. The people who did not like it, somewhat ironically, I could not help thinking, were the mental health charity Rethink!
Incidentally, one GP – married to a psychiatrist – suggested that I was perhaps too generous about the abilities of psychiatrists, pointing out that because psychiatry has been seen as a poor cousin in the medical prestige stakes it has tended to attract less talented practitioners: easier to become a consultant than in cardiology, say!
FP: I’ve heard it said that psychiatry attracts both the best and the worst doctors; alas every speciality has less committed or talented practitioners. Not so long ago general practice used to be the medical career of last resort, but now they’re running the show!
Do you have any advice for psychiatrists in training?
TS: I think it is vitally important that they acquire – I don’t know how – some understanding of what it is actually like to live with schizophrenia day by day: how it affects your ability to organise a proper diet for yourself, keep yourself clean, fill the long hours of the day when you have no job or organised activity to go to; how it feels, when like my son you sign up for a writing course and have to face fellow-students who are “normal” and have no inkling of what you go through or why you might look a little strange and unkempt; what it is like to set off to go and buy a packet of cigarettes and half-way there be ambushed by your voices so that you are afraid to go any further… Psychiatrists for the most part see their patients in hospital conditions; it is not the same thing.
And talking of cigarettes: has anyone given any thought, in this caring age when we are so quick to legislate for other people’s own good, to the desperate need that people with schizophrenia have to smoke? For some it is practically their only hold on life. It is cruel in the extreme to make it so difficult and expensive for them to smoke.
One more thing: because of all this, psychiatrists really need to accept the importance of keeping in close touch with parents and other family carers and of listening to them as important sources of information. I talk obviously of those who remain involved with the care of their ill relatives. We are the people who see the daily reality and also know what the person was like before becoming ill; we are the ones who know the real worth of the person and that is never entirely destroyed by the illness. Schizophrenia sufferers themselves are notoriously good at concealing the degree of their need and notoriously obstinate in refusing any kind of help. I see little value in defending their freedom to go round the bend and possibly harm themselves or others.