Review of Schizophrenia: who cares?

The travel writer Tim Salmon’s son, Jeremy, developed schizophrenia in the late 1980s.  This book is Salmon’s record and examination of the ‘strange voyage’ that has followed.  It’s a critical, challenging book, but very well written, and never bland.

Schizophrenia turns Salmon’s previously able son into a difficult, paranoid and sometimes violent young man.  He behaves in ‘ways that were strange and inexplicable beyond anything I had ever known, beyond anything I had the language to account for’.  Every aspect of his son’s life is affected, his paranoia making friendships hard and intimate relations more difficult still.  Salmon offers a personal carer’s view on the situation that has developed; the fear and despair he feels as a parent, the hopes, regularly dashed, that his son may eventually lead a more ‘normal’ life. 

As the title suggests, a great deal of the book is devoted to examining Salmon’s pragmatic frustrations with the NHS and one is left with an impression that he wishes to inform but also to vent.  He is not always diplomatic in this regard, and this may explain why this book has not reached a particularly wide audience.  It’s not difficult to sympathize: the constant changes of NHS staff make relationships of trust with professionals hard to form; it takes three years – and a barrage of letters – for a care planning meeting to be held; Jeremy’s hostels are toxic and lonely.  Of one NHS employee he writes:

“He replied that he was going on a course and would no longer be involved in Jeremy’s care.  He had arrived on the scene in January of February, heard my concerns but kept me at arm’s length out of respect for client autonomy, unable without my son’s consent to disclose the time of meetings I had been attending for years, encouraged my son to go on a course which lead to my having to go to Toulouse to rescue him and now, in July, after a mere six months of involvement he was going off on a course and washing his hands of the whole business.  Par, one might say, for the course!”

Salmon is generous towards psychiatrists – whom he regards as ‘scientists, trained to look at evidence, identify facts and call them by their proper name’ – but sharp stones are aimed at managerial staff whom he considers to be often of low intellectual quality.  Salmon’s provocative stance is that their increased involvement in patient care has been associated with a shift of emphasis away from effectively treating and supporting those with mental disorder towards an unhelpful focus on ‘issues around mental health’ – ‘accommodating ethnic diversity, obsessive concerns about confidentiality and patients’ rights’.  He finds the accompanying terminology distasteful: 

The current jargon – empowering, accessing, service-users, delivering services, service-providers, advocacy, client – implies at number of assumptions that in my view are inimical to the cause of the mentally ill.  First it implies a relation between the sick person and his healer that resembles that between the purchaser of a pound of peas and the shopkeeper more than that between what we used to call the patient and the doctor.  Second it seems to imply a sort of hostile intent on the part of the healer: that treatment whether clinical or otherwise is a sort of coercive intervention from which the ‘client’ needs protecting.  Third it implies that the sick person is a rational being capable of taking informed decisions about his own condition and treatment. 

Also an anathema is the repositioning of mental health charities towards addressing all mental health problems, serious or not, and their focus on ‘stigma, fear and prejudice’ at the expense of practical help.  He considers talk of empowerment inappropriate for people with schizophrenia who ‘are not going to move on’ and who need ‘stability, security’ above all else.  The recovery model is dismissed as a fudge as, with this approach, ‘put crudely, you do not need to be well to be called well.’

Salmon’s ultimate conclusion is bleak:

He is difficult my son, it goes without saying, but what use is a system that in thirteen years has not been able to tackle any of his central needs, even the straightforward practical ones like benefits and prescriptions?

As well as offering a personal narrative on the effects of mental illness Schizophrenia: who cares is an uncompromising view of the shortcomings of mental health care in the UK today.  Although such a statement of doubt is valuable in itself, I would have welcomed a more fully developed argument on why the current narrative of recovery and empowerment has taken root.  The current ‘issues around mental health’ approach can be seen as a reaction to historical concerns regarding institutionalization of patients, exclusion of ethnic minorities, and abuse of human rights.  Whilst Salmon may believe that we’ve overshot with our concerns in this regard I doubt he would be in favour of a wholesale return to past practice.  Given his day job it is curious that he is not more sympathetic to the vulnerability of ethnic minorities and a general weakness of this book is Salmon’s generalizations which do not peer beyond his own cultural viewpoint or experiences – some people with schizophrenia can hope for a much better outcome than his son for instance. 

Prologue from the book

What’s in a name? Patient, survivor, client – Tim Salmon letter to The Psychiatrist 2010

All in the mind – Tim Salmon features 15 June 2010

9 Responses to “Review of Schizophrenia: who cares?”

  1. [...] Dark Threads by Jean Davidson makes an interesting contrast to Tim Salmon’s book reviewed on this blog a week ago.  Whilst Salmon despairs at the services available to people with an established [...]

  2. Jean Davison says:

    I am the author of ‘The Dark Threads’. As I have not yet read ‘Schizophrenia: Who Cares?’, there is little I can say about Tim Salmon’s book. I see that the author is, understandably, angry about how immensely difficult it has been for him in seeking to get help appropriate to his son’s needs. I can empathise with him. However, different people have different needs, even among those of us who have been given a diagnosis of chronic schizophrenia.

    I was disabled for five years by my treatment (ECT and heavy psychotropic drugs) which apparently the several mental health professionals who prescribed them must have thought was appropriate to my needs. I knew nothing about my rights, or indeed about the mental health system when I entered it so naively as a teenager in 1968. Coming out of treatment, getting off medication, in 1974 (against medical advice) enabled me to move on, and I’ve been fine since.

    I don’t think that because my treatment was wrong for me, it must be wrong for everyone with a schizophrenia diagnosis (though some of the attitudes I came up against were surely wrong for anyone to have to face). Likewise, if treatment is helpful for some people, it doesn’t mean it’s helpful for everyone. For me, it was definitely downright harmful and it’s sometimes hard not to feel bitter about it.

    While simplistic generalisations about such highly complex issues will get us nowhere, I hope the (sometimes differing) views of service users, and carers, will be carefully listened to and debated with a view to deciding on how things can be improved.

  3. Christopher Crook says:

    I haven’t read Tim Salmon’s book either but from the title alone I can sympathise. It is a tragedy that for so many people there is no way back from a diagnosis of Schizophrenia – not because they have an incurable illness but becasue they have been cursed by a latter day witch doctor.

  4. Neuroskeptic says:

    Thanks for this review, I’m going to try and track down a copy as I think I agree.

    Especially re: the modern movement towards “service users” as opposed to “patients”, and everything that implies.

    I’m on two antidepressants and have had therapy and that makes me a patient. It just does. If you have medical treatment, you are a patient.

    I also take the Tube to work. That makes me a service user of the Tube.

    I think the “service user” terminology stems from a kind of linguistic compromise: there are some patients who are happy being treated, and there are some who don’t want treatment and have to be forced or coerced into having it.

    “Service users” is an attempt to paper over this by saying: you people who don’t want to be patients, OK, fine, you’re not patients…except of course they are, because they’re still being treated.

    Which is helpful to no-one. If you don’t want to be treated, you don’t want to be treated, and if psychiatrists want to treat you anyway – you have a conflict. You can’t just make that conflict disappear with a nice bit of word-play.

  5. Jean Davison says:

    I want to reply to Neuroskeptic about terminology. I can’t comment on Salmon’s article ‘What’s in a name?’ because I can’t access it.

    If people want to call themselves ‘patients’, fine. If people want to call themselves ‘service users’, fine. I see no contradiction in defining myself as a ‘former service user’, ‘former psychiatric patient’ and/or ‘psychiatric system survivor’. I wish I had never become a patient, but, unfortunately I did (been there, done that and got the dreadful, expensive T-shirt), though I’ll (try to) shut up about my past now as I’ve already said plenty about it in my book.

    I think the term ‘service user’ is far from ideal, but I don’t know of a better generic term. To use the term ‘patients’, instead of ‘service users’, implies that ALL users of mental health services are patients. Clearly this is not true. Of course, detained and/or coerced patients have little or no choice about being patients, which could open up another debate. But of those who do have choice, some choose not to become patients but to seek help for their problems using the services of non-medical ‘mental health’ (again, for want of better terminology) organisations that provide support, activities, self-help groups, housing advice, etc. Not all mental health services are statutory services who call the people who use them ‘patients’.

    I work for a mental health organisation, affiliated to Mind, which provides a support and information service for people experiencing emotional distress. The users of our service may or may not be patients, may or may not have a ‘mental illness’ diagnosis and they may or may not be receiving medical treatment. Some of the users of our service are no longer patients of mental health practitioners. Others have never been patients and never received medical treatment, not even from a GP. At least ‘service users’ is a term which covers them all, in that they are ‘users’ of a ‘mental health’ (again, for want of better terminology) service, but if they prefer to call themselves clients or something else, that’s okay. What they are definitely not is our patients (nor necessarily anyone else’s patient). Like many similar organisations, we don’t provide medical treatment. We are not doctors.

    Defining all users of mental health services as patients implies that everyone who needs and/or seeks help for ‘mental health’ problems should be steered down the medical route to view their problems as an ‘illness’ and become patients. No! Let there be a range of options for service users (or whatever they should be called) including about whether or not to become or remain patients, whenever options are feasible.

  6. Christopher Crook says:

    I would suggest ‘apprehensive help-seeker’ for anyone who isn’t sectioned, ‘prisoner’ for anyone who is.

  7. [...] FP: I know you would like to reply to some of the comments I made in my review [...]

  8. [...] by a family affected by schizophrenia this book invites comparison with Tim Salmon’s recent Schizophrenia: who cares?; The Cockburn’s dual narrative is an obvious difference and in addition is also a [...]

  9. Sarah says:

    I notice that this book is by the father of a person diagnosed with schizophrenia and not by the person himself. As such, I would be highly skeptical of anything that comes out of his mouth. No one can speak for another, especially not when in a fraught caretaking relationship with that person.

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