My son has schizophrenia. Why can't the system cope?


A litany of failures was revealed last week in the mental care of John Barrett, the man who murdered a stranger in Richmond Park. The failures are not unique. In this brutally honest account, author and father Tim Salmon reveals the frustrations and confusion that have blighted his son's treatment as inadequate care services struggle to manage

Sunday November 19, 2006
The Observer


I do not like to call my son mad. It seems such a final and unforgiving word for a person who for 17 years has struggled with the illness more commonly known as schizophrenia.
Although the underlying condition does not go away, its worst manifestations are cyclical rather than continuous: periods of relative stability interrupted by crises, usually brought on by refusing medication. That is when 'madness' is certainly a much better description of what is happening than 'having issues', the phrase one mental health worker used to describe my son. It is obviously not an easy condition to treat. But once you get involved in this world of 'issues around mental health' - as parent, partner, sister, friend, the mad one himself - you could be forgiven for thinking that confusion reigns.


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I am far from alone in my criticism of the care provided by the mental health services. And I know that many parents of sons and daughters with schizophrenia feel as I do - that there is a certain arrogance among the professional caring services, a presumption that they know better than we do what is good for our sick children. Most of us do not have to deal with situations as dramatic as that revealed in last week's damning report on the case of John Barrett, a schizophrenic who killed a stranger in Richmond Park, south west London, after he was released by the secure unit where he was staying. The report showed that many people working in mental health had put the 'rights' of John before the security of the public or even his own safety. It highlights in the starkest manner the possible consequences of focusing on the rights and liberties of the patient turned client.
There is supposed to be a 'seamless network of care'. It is supposed to cover the medical, social, housing and other needs of the mentally ill. But for various reasons it does not. Some of the reasons are financial, some organisational and some, paradoxically, have to do with the culture - to use a horrible jargon word - of the professional caring services and mental health charities whose genuinely held intention is to care for the mentally ill. A further reason - and far from the least important, as it probably behoves people like me who are critical of the system to remind themselves - is the intractable and messy nature of an illness whose distinguishing feature is loss of reason.

Not that you are allowed to say that, because it runs counter to the 'ethos of optimistic realism', probably promotes stigma and generally interferes with our modern desire to pretend that there are no inequalities or other unpalatable differences between people.

This extreme aversion on the part of the caring professions to calling things by their proper names is one of the most vexatious 'issues' I have encountered. The sick are no longer patients, but clients or service users and, by implication, considered capable of evaluating their own needs, entering into contractual relations with doctors and other agencies whose function is to deliver the chosen service or care package. If this seems a surprising way of approaching people who, when ill, are almost by definition 'not in their right minds', what are we to make of the recent 'best value' review of mental health services by Camden council in north London in which it proposes to give patients/clients direct payments from social services with which 'to organise and buy the services you need for yourself'? And this, when one of the most notorious symptoms of schizophrenia is an inability to understand your own situation.

When I suggested in a discussion about compulsory treatment that perhaps, just as we accept the notion of acting in loco parentis where children are concerned, it might be wise to accept a similar dispensation for people who are 'not in their right minds' - a condition that those of us who have observed schizophrenia at close range are all too familiar with - I was beset by cries of outrage from the spokesmen for civil liberties, advocacy services and pressure groups.

But these are the orthodoxies of the day. Even the National Schizophrenia Fellowship, founded 30 years ago by parents of schizophrenic children to campaign on their behalf, has succumbed. Under the influence of professional charity workers whose training and career prospects depend on their acceptance of these things, the organisation's name was changed to Rethink. Schizophrenia, they argue, is an alarming word: it stigmatises the sufferer and discourages donors to the charity. The group's literature is full of optimistic talk about recovering and positive outcomes, and full of smiling faces on pastel pages. It is not a view of the illness that tallies with my experience or that of the many other parents I have talked to over the years.

The doctors do not seem to have any difficulty in calling the illness by its name, but then it is hard in medicine to develop a treatment for a phenomenon you cannot bring yourself to identify. There was a revealing demonstration of the difference between these approaches at the fateful National Schizophrenia Fellowship annual meeting where the decision to change the name was taken. Professor Robin Murray from the Maudsley Hospital in south London gave an address in which he used the term schizophrenia frequently. He was followed to the podium by the fellowship's chief executive and architect of the name change who did not use the word once. Is the hope that all nastiness and discomfort will disappear if you call it by another name?

As all parents with mentally ill children will know, practical issues are as pressing as ethical debates. The most pressing for us is my son's homelessness. He was admitted to a hospital in north London in May 2005, under 'section' - that is, detained under the Mental Health Act. He is still there. Although his section was lifted in November 2005, he could not be discharged because he was officially homeless. Since he was considered well enough to leave, even though he could not, he no longer had his own bed.

Until he was sectioned again in July, the hospital shuffled him from bed to bed, ward to ward, building to building - including a hotel - in response to the pressures of demand from patients considered to be in more urgent need. It is not a regime calculated to promote the good health of anyone, least of all a person with a history like my son's and was, moreover, in direct contradiction of the doctors' instructions.

And why is my son still homeless after more than 18 months when already, on admission to hospital, everyone knew that accommodation would have to be found for him? The same thing happened in 2003. There does not seem to be a very clear reason, other than bureaucratic inertia and the apparent inability of right hands to know what left hands are doing, a situation compounded by my son's status as 'a client' and 'free agent'. For, when a voluntary agency was finally engaged to help him, he refused them and they withdrew - a decision that I am glad to say has now been reversed, but it was not one that my son should be congratulated for having taken in the first place. Yet, as a client, a customer, who is to say that he does not know best?

I - foolishly, it turned out - had assumed that the local authority, in our case, Camden, would have a stock of accommodation deemed suitable for vulnerable people like my son. But no, that is not how it works: your need is assessed and you are awarded points accordingly. You consult the Camden New Journal week by week, identify the accommodation that your score of points might qualify you for, and bid for it, over the phone, in competition with others in search of a home - ex-offenders, foreign asylum seekers, you name it. Priority, as a 40-year resident of Camden, disabled by schizophrenia? You do not see the property, you do not speak to another human being, you are not interviewed by anyone from the council. It is hard to imagine a less humane way of doing things.

And all the while my son is stuck in hospital, at considerable cost to the public purse. The room he used to occupy, in a hostel run by the charity Mind, to which he does not wish to return and to which he cannot return because Mind does not want him back, remains empty and cannot be given to anyone else until he is rehoused. Where is the logic in that?

And how did he end up in a hostel run by Mind? Because he could not return to his flat following an episode with a neighbour which came about because he had not taken his medication for several weeks. Why? Because, suffering from a kind of agoraphobia, he was afraid to leave the house and walk the 15 or 20 minutes to the surgery to renew his prescription. Why the surgery did not have a way of noticing that such a vulnerable patient had not collected his prescription, I cannot say.

And as for the social services, they had long since given up on him. If you say no often enough, they just stop bothering. You are a free agent, after all, free to act against your best interests until you are found roaring and naked in the street at Mornington Crescent at 3am or shouting abuse at a blank wall in Stoke Newington at lunchtime... or worse. Then you are detained and sectioned.

Last Christmas I was alarmed to discover that there would be no staff at the hostel where my son was staying for four or five days. I spoke to my local paper, which ran an article. I also wrote to my MP, Glenda Jackson, who rang me and told me off for going to the press, repeating Mind's sales pitch about empowerment. When I said I thought this language was hardly appropriate where an illness like schizophrenia was concerned, she accused me of wanting to go back to the days of long-stay asylums.

On one occasion my son was threatened with eviction for being difficult. I intervened and said I thought Mind's position contradictory: on the one hand it accepted residents with a difficult psychiatric history and on the other treated them as if they were normal tenants in breach of their lease. A social worker called a couple of days later to tell me that a meeting was to be convened to review my son's situation. 'That's good,' I said. 'What time?' He refused to tell me, without my son's written permission. I told him that we had seen countless social workers come and go over the years, that the only constant support in my son's life came from his family. He still would not tell me. This is common practice. The Camden and Islington Mental Health Trust would not even reply to my written complaint about my son's current situation at hospital without his written permission.

Shortly after the threatened eviction, encouraged by the social worker to find some kind of occupation, my son signed up for a language course. In Toulouse. And off he went, although he had been more than a month without medication. This, in spite of the fact that his medication had been changed from pill form to fortnightly injection so that people looking after him could keep better track of it. Because, however, my son and all those like him are clients, when he says no, there is nothing anyone can do.

My son is brave and determined, still fighting for his independence and dignity after 17 years. He got to Toulouse, but two days later dad had to set off on a rescue mission - four days of unrelenting and sleepless anxiety. ('Don't say that, dad. We had a really nice holiday together!')

Within a few days of returning home, the police picked him up in the street and took him to hospital. The social worker who had refused to give me any information wrote to say that he was himself going away on a course and would no longer be working with my son. Was he the 31st or the 42nd? I have lost count.

Can anyone explain to me wherein lies the value of the freedom to refuse medication, go round the bend and end up detained in hospital? Yet a coalition of mental health charities, Rethink and Mind among them, are opposing the compulsory treatment laid down in the government's draft mental health bill published on Friday.

I heard Paul Farmer, former Rethink and Mental Health Alliance spokesman on these matters, speaking of 'sections' on Channel 4 news not long ago as if they were routinely used as a tool of repression by a malevolent 'regime'; he made them sound like the old Soviet practice of confining dissidents to psychiatric hospitals. Yet I firmly believe being sectioned has saved my son's life more than once - and the lives of many like him. But then Rethink also apparently looks forward to a time when 'building-based care' will be a thing of the past. Perhaps they have some insider tip on the imminent collapse of the NHS.

During the debate about changing the National Schizophrenia Fellowship's name to Rethink, I received the following explanation from the chairwoman about why she felt the change was necessary: '[It is the fellowship's] wish to move away from the idea that severe illness is the sum total of an individual who has such an illness, to seeing the whole individual who "happens" to have such an illness and, instead of writing him off, considering his abilities, his strengths and weaknesses... All this without losing a sense of realism, that some will not manage much of this, their steps may be very small, recognising that we are concerned with a very real and devastating illness... I am convinced the charity must move to the prevention of the past repeating itself.'

In promoting the case for the three new names proposed - Reason, Thought Works and Rethink - Farmer said: 'We need to develop a strapline, a visual identity and images to ensure that all aspects are addressed. As part of this, it is likely we will develop identities for local activities within the overall image... Rethink has extensive potential for visual identity scheme'. To say nothing of the 'ethos of optimistic realism' and much else in this vein.

In the face of this sort of nonsense and of the confusion that reigns in the mental health 'system' - lack of funds, shortage of beds, absence of suitable accommodation outside hospital, the failure of agencies to co-ordinate activities - it is hard to see who is rooting for people like my son, many of whom end up killing themselves and none of whom, in my experience, ends up with lovely smiles and careers, as Rethink would have us believe.

Tragic history

· Care in the community came under public scrutiny after musician Jonathan Zito, 27, was killed in 1992. His assailant, paranoid schizophrenic Christopher Clunis, stabbed him in the eye on the platform of Finsbury Park tube station in north London, in a motiveless attack. Clunis was 23 when he was diagnosed with paranoid schizophrenia in 1986. He was in and out of various psychiatric hospitals over the following years. In 1992 his condition worsened and he was detained under the Mental Health Act. He was discharged less than a month later to accommodation in Haringey. Eight days before Jonathan Zito's death, Clunis attempted to stab two boys with a screwdriver. No action was taken.

· Ben Silcock, 27, a schizophrenic from London, was mauled by a lion in 1992. He entered the enclosure at London Zoo to feed chickens to the lions and ended up undergoing eight hours of surgery for his wounds. 'I can't remember much about that time because I was on so much medication I was hallucinating,' Silcock told the Daily Mail years later. Following surgery he was taken to Bethlem Royal Hospital in Kent, where he stayed for three years. 'It was quiet and secluded and helped me think things through,' he said.

· David Howell, a schizophrenic from Birmingham, was shot dead by police marksmen in 1996 as he held a supermarket manager hostage at knifepoint. The 40-year-old, who had been a psychiatric hospital day patient, had missed his medication in the days leading up to his death. Howell had been living in a hostel in the city's Erdington area for 10 years. Hours before the shooting he disappeared, talking about the Mafia and threatening to kill a locum doctor.

· City trader Peter Young, 42, was deemed mentally unfit to face a lengthy fraud trial in 2000. He appeared in court wearing a dress and high heels and had previously tried to castrate himself. Young, now living as a woman and calling himself Beth, told psychiatrists his 'unsympathetic' bosses did not understand him or his investment strategy and were plotting against him.

· One person was killed and two others injured after Simon Pring, 30, a paranoid schizophrenic, deliberately drove his car onto the pavement on Oxford Street, London, in 2005. He had suffered mental illness from the age of 11. He had lashed out repeatedly at his parents, and convinced himself, wrongly, that his father had Aids. At his trial the jury heard that on the day of the Oxford Street incident, Pring had 'flipped' because he thought he was under surveillance like a contestant on Big Brother. He had been in the care of a psychiatrist in the months before the incident. Hours before, his father had contacted his son's psychiatric nurse, begging for better supervision.

Alan Power

Words fail me!

firemonkey

Having once lived for many years near Richmond Park & often cycled/driven over the very spot where the tragedy happened (the Richmond Town entrance/exit), I've been following this story regularly.

We should not be surprised at what is happening in the mental health care sector in the UK because health care has ceased to be a service and is now a commodity, which of course means that it is subject to market forces.

The 're-branding' of various mental diseases is much akin to the marketing ploys used by business, it's all part of the same culture. Mental illness is not an attractive entity, but it has to be catered for, and it is easier to pretend that it is just another 'product' for 'customer' consumption. When I say "easier", I mean that the powers-that-be are using window-dressing to cover up the huge flawed defects & anomalies of this market-and-target-driven system of health care.

The phraseology and jargon that is now used by politicians, health officials, et al, should be enough to make anyone realise that the NHS is being run as a business, and will therefore NOT cater for the real needs of patients, because that would simply be too expensive.

I honestly believe that it might have been possible to make the health service work efficiently as a publicly-funded service, but I think it is too late now. We have all been indoctrinated and educated to believe that the only value worth living by is to be totally independent and not rely on the state or anyone or any other organisation to help. I think independence is a good thing and am fierce about my own independence, BUT it only goes so far - there comes a point when people become ill, and then they need society to be a cohesive and supportive entity so that they can get back on their feet again, and I am willing to pay taxes to support such a system. (I am deliberately leaving out references to the 'spongers-fraudsters-idle/work-shy', not because I don't think these people exist, but simply because I believe this is so over-played in the media, and because this is a separate issue which does not affect the principle of whether or not you believe in health care as a publicly or privately funded system.)

Finally (if you have not given up on this rant yet) the so-called political correctness that deams it necessary to stop calling a spade a spade, is NOT imo because we are all so sweetly concerned about not wanting to offend people; it is all part of the cult of the "new-speak" bandwagon which appears to make it much easier to deal with a problem if you first diminish its reality by reducing its seriousness - and what better way to do that than by calling a spade a shovel, in other words, "re-brand" it into a marketeable item. Then get other health care "providers" to bid for it, and the politicians will have solved another health care problem "seamlessly" by providing "community-care".

The fact is, the community doesn't care - the community services are too fragmented & underfunded to care, and will continue to try to meet government targets by providing only the most basic health care, and at the same time probably have to complete masses of jargon-ridden paperwork about diseases they no longer recognise because they have all been renamed.

I apologise if this appears to be a political rant - it is not - I am PASSIONIATE about the NHS, not necessarily as it was previously run, but as a PRINCIPLE of the humane & compassionate society I would like to believe that I belong to. If you spend enough time reading these boards, it is not long before you realise that humanity is suffering greatly, and that perhaps the single most important thing in anyone's life is their health.

Yvonne

Yvonne,
If it was a political rant it was my kind of political rant.