Sunday, 13 November 2011

Rethink AGM and Members Day

Hi again

Paul and I went to London yesterday, to attend the Rethink Members Day and AGM.  The AGM was probably the quickest part actually - just a show of hands on various matters such as voting in new trustees.  The rest of the time was taken up with various talks, question and answer sessions, and a workshop in the afternoon - we chose to attend the one on the new Schizophrenia Commission.

We were very well looked after.  The conference was held in the Russell Hotel in London - a beautiful place if ever I saw one - and there was tea and coffee on tap most of the day, with cake and biscuits, and a rather sumptuous lunch.  Which of course is irrelevant, or should be, but I am easily impressed by posh hotels and good food. 

The Rethink staff - there were many present - were very tolerant and patient, as of course they should be in their profession.  Some people became upset during the day - not terribly so, but emotional.  There is a lot of injustice in the mental health system, and this was very apparent in the type of issue that people wanted to raise.  When people speaking out about their problems became overcome by emotion, nobody sniggered or sighed or smirked or tutted.  Everybody listened and was sympathetic.  That was rather wonderful.

I had high hopes for the Schizophrenia Commission workshop, and it was fairly conducted; opinions were canvassed, listened to and duly noted.  However, several people repeated points of view that had already been raised - a lot of parent carers who were present were concerned, for example, that the finger might be pointed at them for not raising their children properly and 'allowing' them to get schizophrenia, or contributing to their development of it, and they became quite passionate while trying to state their case.

The issues of schizophrenia are so complex, and people affected naturally hold strong and passionate views on the subject.  It is a good thing to canvas the opinions of those who are personally involved, as sufferers or carers.  I came to the conclusion by the end of the day though that it is important to remain detatched - if progress is to be made, we need to keep an objective stance and study and consider the subject carefully and rationally.  Only then will our personal experiences be of value.

When I had a chance to speak, I said that I thought the Commission should look at recovery, and how the message should be put across that recovery from schizophrenia is a possibility - that the outlook at the point of diagnosis should be hopeful.  And also, I said, the diagnosis itself should be reviewed - the stigma of manic depression was lessened in an instant by renaming it bipolar disorder, and only after this occurred did such luminati as Stephen Fry and Catherine Zeta Jones put their names to the cause.  In the same way, if schizophrenia was retermed a 'nervous debility' for example, the pain and suffering caused by the diagnosis itself, this awful label, would dissipate. 

Others in the workshop objected.  I think their point of view was that renaming the illness would detract from the seriousness of the condition.  But here I really think that the sufferers of schizophrenia should be canvassed thoroughly - and I am convinced that almost all of them would prefer their condition to be differently termed.  In fact, Bert Johnson (the Rethink Chairman) himself was present in this workshop and he said there is a precedent for changing the name - that those now spoken of as suffering from learning difficulties used to be known as mental defectives.  So he understands.  

We were asked for our views on medication.  I put my hand up immediately, but I was passed over as I had already spoken.  Which was a pity, because everyone who then had a chance to speak spoke on other subjects, and medication was not discussed at all.  I got a bit down at this point - will the Commission make any real changes, I wondered?  Earlier in the day I had picked up a booklet about research into recovery from mental illness - which, to its credit had been co-written by 'Service Users' as well as mental health professionals.  But the research was sponsored by Astra Zeneca. 

Of course I had vaguely realised that Rethink must get some funding from the pharmaceutical industry, but I was still dismayed to see it in print.  I believe that drugs should only be used in crisis, and only with the consent of the patient, unless the patient truly is a danger to himself or others.  I never was a danger, but I was forcibly medicated many times, and the forced administration of medication is the aspect of psychosis that was more frightening, more disturbing, than anything else I remember. 

And I was not the only one - I have mentioned on this blog before that one day I watched as a girl broke down in tears for no apparent reason.  She was inconsolable, but they were only tears.  She would have got tired and stopped crying, even if nobody had done anything.  She might have stopped sooner, if somebody had taken the time to talk to her, or listen to why she was suddenly so upset.  But no; the response of the psychiatric team was to descend en masse, drag her off to her room, where I didn't need to be present to know what was happening to her.  They pin you down, arms and legs, face down on the bed, pull down your trousers and pants and inject drugs into your buttocks.  They did that to a young girl because she cried!

Anyway, what was that I was saying about remaining objective?  Hmmm.  Well, I think drugs should be short term, and given in conjunction with psychotherapy (another point that was made during the Commission workshop).  And then the patient should be consulted all the way, and the drugs should be tapered off, and the patient still consulted and monitored and helped, with the aim being to live drug-free and to learn how to manage any symptoms - anxiety, panic, sleep difficulties and so on, and to eventually learn to monitor and regulate oneself - one's own health. 

Instead of which, the assumption is that the schizophrenic patient will need medication for ever.  Those doctors who told me that I would need medication for the rest of my life, and that I would get worse as I got older, were nearly right.  If I had taken medication for the rest of my life, I would have got worse.  The result of long-term anti-psychotic medication is brain damage.  By learning to live without it, I have been able to recover.

By the end of the workshop, I asked Paul to go for a short walk with me.  We missed a couple of award ceremonies, but I needed some space to think.  At the start of the day I had been hoping I could be of some use to Rethink - and that they could be of use to me too, in getting me back to employment.  I have recovered, I thought, I could be instrumental in helping others to recover, what could be better?  But as the workshop finished, and the event was due to finish just an hour later, I started to feel a bit dismal.  All the people I had listened to seemed to have quite a different point of view to me.  They were upset about the muddle and injustice in the system.  They wanted to know what could be done to improve services.  But nobody was very hopeful about complete recovery.  Nobody objected to the use of medication.  Maybe, I thought, this charity is not for me.

So Paul and I walked and we talked.  We have talked a lot about benefits over the years - I hate taking them, but they have been valuable for relieving stress, for taking away the pressure that would have come with needing to find a job.  They have contributed to my recovery.  But I have the feeling that a lot of sufferers and their families are accepting the label and the medication because they come with the safety net of the benefits.  It is a difficult subject - the single thing I have found most striking about mental hospitals is how poor the patients are.  You can just tell by looking at them.  You can see why they got ill.  They were desperate, destitute. 

(I know in private clinics like the Priory you get a different class of patient, but I think they recover a lot better in those places.  I bet they don't get diagnosed schizophrenic as easily either.  More likely to be told they have bi-polar or a sex addiction or whatever.  I could, of course, be wrong).  I feel a sudden urgency to ditch the benefits - I would be foolish to do it without a job to go to, and with Christmas coming up, but it seems to be a part of the problem.  Maybe it is the last thing holding me back.

And the diagnosis.  When I started this blog two years ago I had no idea of challenging the diagnosis.  When I went on my writing course a year ago I spoke about my schizophrenia publicly for the first time, and the reaction of most of those present, who ranged from psychologists to therapists to tutors on the subject to a lady who had sat on Mental Health Appeal Tribunals, was that I didn't appear to be schizophrenic.  Maybe I had ben misdiagnosed, they suggested.

I have taken no medication for twelve years and I have no symptoms of the illness, so I could see what they meant.  But I could not agree with it at that time - I have always been scared that if I deny that I have schizophrenia, I will become ill again.  That I could only keep the spectre under contril by acknowledging its presence.  (This goes back to the day hospital, when I was told that I would never get better unless I accepted that I was ill.  And then, of course, they said I could not get better anyway, because nobody ever does from schizophrenia).

And I also felt that if I accepted that I was not schizophrenic because I had become well, what hope of recovery would that give to other schizophrenics.  Psychiatrists could continue to tell them that there was no hope for the future etc, because those that do carve out a life for themselves, like me, are then told that they don't have the illness after all. 

Not that it seems as though anyone is ever going to tell me that.  After my second daughter was born a pyschiatrist talked about reviewing the diagnosis, then changed his mind when he spoke to the rest of the 'Team'.  (Sorry for repeating things I have written earlier in this blog.  I generally try not to, but I am trying to develop a coherent argument here, and some of this history is relevant).  These days I sometimes think - twelve years, no drugs, no symptoms - is nobody ever going to say I am not ill any more?  And why not?

I became gradually more confident since my writing course.  All these people thought I was normal, I was ok.  Thought I didn't have schizophrenia.  Maybe I should work with that?  Just walk away from it/

I look back on my situation, and I see a child who was unable to cope with life, who grew into an adult who was equally vulnerable.  I was born nervous.  I had all sorts of problems at home.  I left home at the age of sixteen.  I smoked cannabis.  I got myself to University although I had no support from my family.  It would have been odder if I had not suffered a breakdown or three. 

Nowadays, I honestly think that I no longer suffer from schizophrenia (if that is was it was).  I think I have an anxiety disorder, or a panic disorder, of some kind, which is pretty much under control.  In fact, it is getting better all the time.  I have learned not just to cope with life, but to take an active part in it and enjoy it.  I have been lucky along the way - I met a wonderful man and we had a family, but none of this was handed to me.  I have worked hard at becoming as 'normal' - as happy - as possible. 

So I realised about six months ago that I was in the position where I could walk away from the mental health issue.  With my law degree, I could get a job of some kind, talk my way through the gaps in my CV.  Probably I could hold that job down - because I do still suffer from stress, but who doesn't, and I have various strategies to cope with it.  I didn't have to publish my book.  I didn't ever even need to mention the word schizophrenic again.

But I didn't take that option.  I published the book, and I let my friends and family know what I had done.  It is therefore a bit late to refute the 'schizophrenia' label.  And as I said, no mental health professional seems to want to remove it for me.  But I think that I made the right decision to be open about my past.  Whether or not I have schizophrenia now, I have suffered the effects of it.  I was as ill as anybody could have been, I was psychotic.  I had three nervous breakdowns.  And I came back from the brink - but I can't walk away now, I can't leave everybody else in there, and not try to help.  I have to try to share my experiences of recovery, because it is only fair.  I do know more about schizophrenia, about mental illness, than a lot of people - and Rethink is my best hope of helping others through it. 

Rethink are trying, after all.  They understand.  They care.  They are listening to sufferers, and trying to improve things for them and their carers.  Had it not been for the Time to Change campaign, I might have never had the courage to become open about my diagnosis - and that has been a positive experience for me, to learn that my friends have not all abandoned me, that they still see me as a person, and that to a great extent I have misjudged the perceived stigma (although had I not kept the diagnosis to myself for so many years I might never have had the confidence or opportunity to make so many friends).

So I will stay with Rethink, try to help with their campaigns, try to stay objective, try to be patient.   Try not to militantly propound my views about medication, and about the damage done by labelling, and just trust that the system will change for the better, in time.  Hopefully it will all be ok in the end.  And I want to be part of making it ok.

Louise x x

 (PS  Does an extra long blog post make up for a week of hardly any blogging?  It has taken me TWO HOURS.  On a SUNDAY NIGHT.)


  1. Great post. Many perceptive comments. I'm not a member of any of these mental health groups, but you've pointed out that a lot of the discussion centers around services, getting them, keeping them, expanding them. What about getting well, and not needing these services is always my thought. The focus on services distracts from the real issue here.

  2. I just saw this term on Twitter and it fits.
    The "Disability Industrial Complex" is a name for groups that earn their livlihood from mental illness.

  3. Hi Rossa

    It is all a conundrum, isn't it? Without Rethink, and similar charities, we would be in a much worse position though. This is why I did not let myself become disenchanted yesterday. I guess we have to be pragmatic - without the drug company money, the chatities might not exist, and they do provide a forum for discussion which may lead eventually to changes in the system. I have hopes for the Schizophrenia Commission - although I wish that people like Rufus May or Richard Bentall had been invited onto the panel (perhaps they were offered the chance and turned it down, I really have no idea!)

    I would love to work for Rethink or Mind (they sponsor Time to Change, which I have applied for a position with). If that doesn't happen I am considering starting a local Rethink group on a voluntary basis - although I would have to keep a close eye on the level of committment it would involve. I will keep you posted.

    Louise x

  4. Louise, I am the mother of a young man who was diagnosed schizophrenic in 45 minutes three years ago. Since then I have been quietly poking about because I feel he was sold a "bill of goods". Sure he is a bit "quirky" but who isn't? Our challenge is to find a way to :fit in" yet remain an individual. The challenges of motherhood. I enjoyed reading your post because it says what I very much feel.

  5. Oh well done, Liz, for believing in your son! My mother never believed in my diagnosis, but I took the advice of the medics to ignore her; they said she was 'in denial'. I could have saved myself a lot of anguish if I had trusted her more. I hope your son is ok now - tell him not to let the diagnosis drag him down (and to stay away from dope; I have no idea whether this was a factor in his illness, but it so often is, and I am prepared to take drastic measure to prevent my kids from ever touching the stuff. All the best).