... " I do not like to call my son mad. It seems such a final and unforgiving word for a person who for 17years has struggled with the illness more commonly known as schizophrenia.
Although the underlying condition does not go away, its worst manifestations are cyclical [ Ed, no - fluctuates } 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.
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 of the mental health charities whose genuinely held intention is 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 ( Ed.ordinary ) 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 -1 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 talked to over the years.
The doctors do not seem to have any difficulty in calling the illness by its real 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 demonstra-tion 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 it 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 moreover was in direct contradiction to the doctor's instruction.
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 ( or willingness - no see = no know ? ) 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 Sam 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 ion. 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; Mind among them, are opposing the compulsory treatment laid down in the government's draft mental health bi!l 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. [ Home Treatment !!! ]
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 anindividula who has such an illness,in seeing the whole individual who happens to have such an illness , and instead of writing him off, considering his abilities, his strenghts, his weaknesses..."
All this without a sense of realism, that some will not manage much of this , their steps may be very small, recognising that we are concerned here 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, Rethink - Farmer said :- " we need to develop a strapline, a visual identitiy and images to ensure thatall aspects are addressed. As part of this 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 nonsense and of the confusion that reigns in the mental health 'system' - lack of funds, shortage of beds, absence of suitable accomodation outside hospital, the failuire of agencies to co-ordinate activities, it is hard to see who is rooting for peole 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.... "
T.. S.....'s son, now 40, he has suffered from schizophrenia since his early 20s and is currently homeless.
a reaction from Cornwall .... ' It was with dread that I read S's article in the The Observer
Having a sister who has suffered mental illness, I know the frustration when 'professionals' won't talk to members of a sick person's family without the 'client's' written permission.
They must know the 'clients' are unable to look after themselves and need relatives' help.
The article highlighted all that is rotten in psychiatric medicine, politics and social services departments - from MP Glenda Jackson talking rubbish about 'empowerment' to the gobbledygook of the sort that led to the National Schizophrenia Fellowship being renamed Rethink
It all sounds hopeless, but something can be done, there is a way in to put force on the system - if you know about it and if you lift your self up and use the way in. see the Care programme Approach and the links
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