Rethink Mental Illness National Members' Day 2012

I returned quite late last night from Nottingham.  I had travelled up with my friend on Friday night, and we had stayed overnight at a hotel in preparation for the Rethink Mental Illness Members Day on the Saturday.  I had fond memories of this event from last year, when it was held at the Russell Hotel in London.  My friend, incidentally, is a Trustee of the charity - I won't divulge her name here as I don't know whether she would appreciate that.  Thanks to her, I got to travel up for free (she will get her expenses reimbursed by the charity) and I shared her hotel room for just a small subsidy.

The best part of the whole weekend was - coming home, of course!  I was homesick almost as soon as I left on Friday morning - so just arriving home last night and walking into my bright warm comfortable house, filled with the people who I love so much - was blissful.  My younger daughter had been baking, and presented me with a tray of biscuits, each with an iced letter, spelling out the words, 'Welcome back!'  It was almost worth going away, just to come home.

However, I do wonder what I am doing sometimes, with this mental health activism, and why.  I wonder if it is damaging to me personally.  On a very basic level, I would have had a much more peaceful and relaxing weekend at home, and on a more complex plane, the potential harm done to my social life and career by identifying myself as a person with schizophrenia is possibly quite serious, although not quantifiable in any way.  (The most important factor is of course the possible effect on my children of being identified as the offspring of someone with a diagnosis of schizophrenia).

On the way home, after we had discussed the day's events, my friend suggested that I should write something else for a while - a nice romance, perhaps, or a children's book.  She said she thought it would be better for me.  She may well be right.

The thing is though, that I have no real choice.  I just feel compelled to carry on with this work.  I have never had a career anyway, prior to identifying my vocation as a writer (possibly because of the damage that was done to my psyche by the infliction of the diagnosis in the first place) and I have never been one of those people who is impressed by the social standing of others or who wishes to pretend to be something I am not in order to impress other people.  And I still maintain that my children are more likely to benefit from all this than they are to suffer from it - as long as I remain firmly rooted in the home, loving and nurturing them, and don't get carried away by my wish to improve the mental health system and end up neglecting my own family's needs as a result.

I suffered a major disappointment yesterday - I learned that the Schizophrenia Commission have not recommended that the label be abolished or changed as I had hoped.  (The report is not due to be published until next week but I feel no sense of loyalty that would prevent me from publishing this 'spoiler'). 

I was not actually surprised to find out that the label has not been changed - I suspected as much by the fact that after asking me to write a case study (of my own case) I was asked if I would mind if it was 'tweaked' to reflect the fact that some members of the Commission do not agree with my view of the damage done by the diagnosis of schizophrenia.  After some thought I rejected my instinct towards compliance and wrote back to say that if they did use my case study I would prefer the wording left intact.  They agreed to use the case study as I wrote it, and apparently it has been included in the report (although I think anonymously.  I am not sure, I have not seen it, but one of the other Trustees who I spoke to yesterday dropped a big hint to this effect).  Although of course, it might be removed after I have published this blog post!

So I had an inkling of what the outcome of this report would be - and it was confirmed as soon as I saw the title of Robin Murray's talk at the meeting yesterday - 'What next for the Schizophrenia Commission?'

So the Schizophrenia Commission will continue - having already let down the people they are supposed to be helping.  The parts of the report that Robin Murray disclosed yesterday say nothing that anybody didn't already know - that there are problems in the system and in the use of medication and so on and so forth.  As there always have been.  I listened hard, and I didn't hear anything ground breaking in anything that he said (although I was surprised at the extent of his criticism of mental health nurses, speaking of how they become hardened over time. Of course they do, by having to earn their living in a system that provides so little in the way of care.  He also said that psychiatrists are not as good in private hospitals as in the NHS.  Interesting, that - I wonder why the recovery rates are so much better in private hospitals, in that case.  And I can't help wondering whether, if Robin Murray himself ever became mentally ill, whether he would choose to be treated at the Priory or by his local NHS Trust.  I'm pretty sure I know the answer to that.  Although the head of the Royal College of Psychiatrists just might have a slightly different experience than others in the mental health system).  I am not trying to be bitter and bitchy, by the way.  I just can't help it.  I am deeply disappointed.

I was actually close to tears yesterday on at least two occasions.  The first occasion was when listening to a poem read out by Peter Cox, who won the Pringle Prize for Poetry.  The poem told how it felt to be an outsider from society, about how others' perceptions impacted on his view of himself, how he couldn't even enjoy a sunny summer's day without feeling guilty for his brief happiness.  When Peter was given his prize, he asked humbly if we would like him to read out the poem, and there was hesitation from the award giver and the Board (proceedings were already running late).  Fortunately, several members of the audience filled the gap by calling out 'Yes!' and Peter was allowed to read his work.  That hesitation though, made me feel physically sick.

Later, I almost wept again when I realised that my suspicion that the Schizophrenia Commission had rejected their opportunity to effect any real change for sufferers was true.   Luckily I didn't disgrace myself (or conform to anybody's expectations of volatile behaviour from a 'schizophrenic') by actually crying in public, but it was hard to prevent myself from doing so. 

I know that so many lives could be changed, so easily and simply, by simply changing that word to another term.  Thought disorder - or, if that is not sufficiently 'serious-sounding' for mental health professionals, psychotic disorder syndrome or some such nonsense, as suggested by a member of the audience.  Anything, any change in the name, would reduce the stigma of diagnosis at a single stroke, and would improve the outlook and chances of recovery for sufferers. 

Changing the name would be an act of simple human kindness, and keeping the name is a cruelty.  An unnecessary cruelty, that benefits nobody except the psychiatrists themselves, and the rest of the mental health industry, who consequently get to continue to enjoy their power over other people's lives.  I can't imagine what else their motivation can be. 

I am staggered that they haven't effected the change.  Robin Murray was questioned on the subject by a member of the audience and he couldn't produce a coherent reply - he stuttered and stumbled over the issue, saying there were differing views, even claiming that, 'The Schizophrenia Commission doesn't have the power to say one way or another' (really, Sir Robin?).  Eventually he told us that although the diagnosis had been changed in some countries it wasn't going to happen here at the moment, but that maybe in a few years time, things would be different.

And the cynical part of me was thinking - oh yes, maybe after a few more years of enjoying the power and the glory (and the pay, and the public recognition) of being Chair of the Schizophrenia Commission - maybe when he has milked that for all it's worth - maybe then Robin Murray might get around to changing this damned label and thus alleviating the suffering of all those who have been led to believe they are less than human - that they are schizophenic and therefore 'other' and incapable and powerless and hopeless and helpless.  And helping too the young people who have been recently captured by the mental health system - preventing them from losing their hopes and their lives to the malicious diagnosis of 'schizophrenia'.  A lot of human beings could be spared a lot of suffering from that name change.  But not now. 

Not yet.

No.

Let them eat cake.