Thursday, 22 March 2012

London, the Schizophrenia Commission and Everything

Well.  Indeed.

I had a fantastic day yesterday.  I felt that I had done so many worthwhile things.  Not the least of which was travelling to London - alone, and finding the way to my destination, via the Tube - alone.  I know this is something that other people do every day of their lives, but because of all the issues I have had with anxiety over the years my horizons have shrunk, and even though I have improved so much in the last six months or so the journey really did seem like a challenge for me.

I was helped by a couple of things.  I was at my daughter's school the other week, waiting to collect her for some reason, and I saw a notice on the wall, a quotation from somewhere.  I assume they change them regularly, and I like this sort of thing (I get an uplifting quote delivered to my email inbox each day by the Happiness Project, as I have written here before). 

Anyway, I can't remember who was quoted, or exactly what was said, but it was something along the lines of, 'God has given you tongues in your heads, so for goodness sake, speak up!'  And I thought, yes, that is exactly the sort of advice I needed as a youngster; instead of which, I became more and more introverted until...well, you know how it ended, I shrank so small that I almost ceased to exist.

Anyway, I took that advice to heart on the journey to London yesterday, and whenever I was in doubt, I just asked.  The first person I asked for help, when I had to change trains along the way, was very kind, and when I explained that it was the first time I had travelled to London on my own, he said, 'An adventure, then'.  And that was the second thing which helped me on my way - I thought, yes, it's an adventure, it's something to enjoy, not to be frightened of, and from that moment on I was practically zen-like in my attitude.

Anyway, to cut a long story short, the journey was a doddle.  I arrived at the King's Fund building half an hour early and proceeded to have one of the best days of my life (so far, and apart obviously from the children's births, meeting Paul, etc etc). 

What was so amazing was that I found myself to be capable of so much.  It helped to know that no-one was judging - the Commissioners were all open-minded people and truly interested to know our opinions.   They had invited us - about fifteen people with a diagnosis of schizophrenia - to a meeting to discuss our experiences of the system, what needs to change and how, what are the barriers to supporting those with psychosis, and so on. 

We were divided into three groups - ours had three commissioners, Clare Gerada, a GP and Chair of Council at the Royal College of Practitioners, Jeremy Laurance, Health Editor from the Independent newspaper, and David Taylor, director of pharmacy and pathology at Kings College London. 

The discussion that ensued was fascinating, although I fear I did more than my share of the talking - what was I writing here a few weeks ago about resolving to be polite and take my turn?  All of us - the three Commissioners and six 'schizophrenics' in our group, engaged in impassioned debate for an hour and a half as notes were taken by two members of the Rethink staff - and glancing around the room I could see equally heated discussions taking part in the other groups. 

After a break for lunch - which took me ages to eat because I was still so busy talking - we returned to the room, where the chairs had been arranged in a large circle, for feeding back and summing up of the various discussions. 

There turned out to be a lot of consensus in the room.  It was agreed that understanding the social factors which influence mental health is crucially important, as is continuing to work towards decreasing stigma.  That there should be more normalisation, and less pathologisation of mental illness.   There should be more emphasis on hope for the future, and the possibility of recovery.  More choice, as regards drugs and types of treatment.  More humanity.

At the end of the afternoon, Clare Gerada summed up the general feeling succinctly, 'The label (of schizophrenia) acts as a barrier to recovery'.  I left the meeting on a complete high, with real hope that the Commission will do their best to put this problem right, and I headed home with the sense of a day well spent, in the company of honourable people.


  1. Well done! Fully support the recovery but what of the treatment during acute phase when sectioned? Was that discussed too? Seems recovery is being looked at and not initial treatment here in truly 'mad stage' as you call it? Is anyone dealing with that having read others comment on what they have been through at the stage when they couldn't help themselves anyway? Or is that the point you are suggesting that is mental breakdown and not a diagnosable time? Good for you anyway!

  2. I'm so glad you made the trip and made your thoughts known. Bravo!

  3. Thanks Rossa. You're a brick (English expression, not sure of American equivalent, but definitely positive!)

    And Anonymous - this meeting was about recovery. But yes, other ground was covered, and I did speak about treatment during acute mental distress. (I spoke about all was impossible to shut me up). I said nobody should be forcibly medicated, and suggested that if somebody refused treatment they could just be left alone, behind a closed door, and approached again later.

    Jeremy Laurance said that he was worried that people would suffer immensely if they had the option to refuse treatment - he had heard of a case where a girl instructed her boyfriend that if she ever became psychotic he should chain her to a radiator at home rather than call for help and allow her to be sectioned again. I told him that was obviously due to the brutal treatment she had previously received in hospital. So, a bit of a chicken and egg situation.

    If there was more openness and trust between mental health services and the people they are supposed to be helping - which the mental health services would have to earn by never forcing treatment on anyone - then more people would ask for help earlier, and not need to go to hospital. And those who did become psychotic would not necessarily need to be hospitalised - in other countries they use hospital as a last resort, treat people in their homes while looking at the wider social picture. (All hail the Finnish system and the documentaries of Daniel Mackler!)

    In my case, mental health professionals aiming to treat me for my first breakdown would have found a vulnerable nineteen year old, who had left her dysfuntional family home three years previously, just split from a long term boyfriend, homeless in the University Easter break, sleeping on her sister's floor. Lonely, paranoid, poor, hopeless, socially inept, and lost. No wonder my mind slipped away from the situation I was in.

    I also explained to the Commissioners that even in the throes of psychosis, sufferers have periods of lucidity - and I was backed up on this point by others in the group. The important thing is for mental health treatment to be consistent, caring and gentle - the ultimate aim being to foster trust. That is why safe havens like the Soteria houses work so well - because in those periods of lucidity the sufferers can see that life is worth living, and they are motivated to get well.

    A lot of ground was covered in the meeting, but I suppose it would have been impossible to get definitive answers to every question. Towards the end of the afternoon session, the issue of money crept in - the few Soteria houses we have are closing due to lack of funds, it is impossible to model hospital services on private hospitals because of the cost... So sad. But the outlook remains positive - professionals are starting to recognise the failures in the current system and trying to make amends - I wish the Schizophrenia Commission luck as they continue to work towards finding solutions.

  4. well done! I think you are doing a good job by speeking up.I wish my son would but he is still too traumatised by his experience in the mental health service.He nearly died twice because the psychiatrists refused to believe him when he reported the side effects he developed on the antipsychotic medication and refused to help him to get off it.

  5. Thank you. I am not surprised your son doesn't want to speak up - there is still huge shame around mental health issues, and he probably just wants to distance himself from the psychiatric system and forget about the whole thing. Maybe if you point him to the Mad in America site and other resources on the web he will start to understand that he is not the only person who has suffered from abuses in the system, and will be motivated to stand up and be counted, to stop the injustice for future generations...

    His case sounds very extreme, since he was driven mad and both you and he were disbelieved about the circumstances. It might be more common that we realise though - a similar thing happened to a woman I know - she was given a drug which made her hallucinate, and she nearly had her kids taken away as a result.

    I have found it so liberating to be able to be honest about my past and I have finally dealt with the shame of it in this way. I no longer feel that I have anything to be ashamed of in my past, and that makes me feel so much happier and more confident. Your son probably still thinks that no-one would believe his story, but I bet they would. Maybe he could start by writing an anonymous blog, as I did?!

    And it might also be worth directing him to the sites of Rethink and Time to Change - or going to therapy such as CBT where an impartial counsellor could listen without judging him and show him practical ways to move on with his life.

    There is also a blog called 'SkyBlue Cure' - this guy recovered completely and writes well about it, and so does Marian - I can't remember her blog details but she has commented on Rossa Forbes' blog recently so you could find her that way. I think she is from Denmark or one of the other Scandinavian countries.

    If you have trouble finding any of these resources, just drop me a line and I will link to them properly. It is such a beautiful day today, and Toddler's day off play school, so I don't want to spend any more time on the computer just now!

    I hope it all works out. I hate the thought of young people losing their way in the system and accepting a life that is less than the one they were born to - there is just no need!

    All the best, Louise