Friday, 11 April 2014

At the National Psychosis Summit

Well, I have loads to say about yesterday's Summit, and only a short time to write this post.  I have sent the girls out to walk the dogs (under massive protest) and the boys are watching TV.  In half an hour we are going swimming, and I haven't packed the bag and I still have my pyjamas on. 

So I'd better get started.

First of all, it struck me with force yesterday that I was really lucky to be there.  The conference (Summit sounds more important, but I need to get over that) was held in Dean's Yard at Westminster Abbey.  It was a stunning venue, and as I sat in the main hall listening to the opening speeches I thought to myself, grandiosely, 'I have arrived'.

I do get really excited about going to London for 'Work'.  Having never really had a career, despite the promise of my childhood (glowing star child of Roedean and all that) I relish the chance to feel as though I have something to contribute to the world.  The fact is, though, that most of the others at the conference were professionals - I had only earned my place there by default. 

Anyway, it was good of Rethink to involve me and the other 'experts by experience' in the day's events.  Changes are afoot in mental health - because the government has realised that the current system is unacceptable.  I had hoped that I would be able to put my case across for the abolition of schizophrenia as a diagnosis, and for the ending of restraint and forced medication, with the aim of making the new system a kinder and more healing one.

I did say these things, throughout the day during the workshops I attended and to people I met at lunch and so on, and I am sure that some people listened and perhaps understood a little.  However, when I was given a microphone at the end of the day's summing up, I am not sure if I spoke coherently at all.  I was so tired by then (I had not slept much the previous night and I always find these sorts of events exhausting anyway).  I bumbled away about consent and control and human rights until someone took the mic off me, and I felt like a right idiot afterwards, especially when one of the other 'experts' then gave a rousing and moving speech from the podium.

In my defence, the chair of the event, Lord Victor Adebowale, was a bit of a bully, and kept interrupting to say, 'so?' or 'and?' which was quite distracting.  He did this not just to me, but to lots of the other people who tried to ask questions or make points.  He is a black guy (I am not sure if this is the correct term now, but it was when I was at Uni many moons ago) and he had a real chip on his shoulder about the treatment of black and ethnic minorities in the mental health system.

He interrupted one lady quite rudely, when she tried to say that people in these groups can be hard to reach, shouting her down and insisting that it was the services that are hard to reach.  He made a point about how disappointed he would be if the BME workshop attendees were all from the BME groups.  He was quite objectionable in his overall demeanour and behaviour.  And the result was, I am sure, just to put people's backs up.  He was very 'you and us' about it - he actually said, 'I hope this day is not going to be all about your people'.  I mean, black and white are not us and them - it is a matter of we.  And the strange thing is, I got the impression that everyone present understood this - except Lord Victor.

I was really disappointed in him.  Norman Lamb, the Minister for Care Services, also made some opening remarks, and he came across as a proper statesman - dignified although not above a joke, fair and courteous.  But Lord Victor, I felt, treated us as if we were all his minions.  Was it me, or did I see Rethink's Victoria Bleazard titled 'Empress' on the big screen in the closing speeches?  If it was there, it was gone in seconds.  It did make a valid point, but I wouldn't want to get the Rethink staff into trouble.  I only mention it because I wouldn't like any of the other 'experts' to have thought they were hallucinating.  If they are anything like me, they will always be watchful for sudden symptoms.

Lord Victor's failure to be polite made me feel even more disappointed in myself, for not being clearer when I did get the chance to speak.  I have a chip on my own shoulder, and it's hard to shake off.  I did say that we have come a long way, to have people like me involved in co-producing the summit (although to be honest, 'co-production' is rather over-egging the pudding in this case - my contribution amounted to just a few phone calls about minor matters).  We need to co-operate.  Establishing trust in the mental health system is crucial, and for that to happen we have got to stop being adversarial about it.  Even the term 'survivor' gets peoples backs up - although I do find it hard not to feel like I have somehow escaped from the fate which often befalls people with my diagnosis (medication for life and disability benefits for life).

I am not even sure I made the point about how unhelpful diagnosis is, during the summing-up.  However, I have a feeling that this fact is already beginning to be acknowledged in the system - the fact that this was called the Psychosis Summit and not the Schizophrenia Summit was a big step in the right direction, even if Lord Victor and others did keep speaking about schizophrenia.

I don't think I am going to do any more of these events.  I never seem able to stay calm and always end up feeling that I have over-exposed myself.  I don't seem able to come across very rationally.  Mental health treatment is just such an emotive subject, and all these years on I am still burning from the injustice of the 'care' that I received.  And change is happening anyway now.  I am not really needed.  I can continue to write and to post here - I don't need to put myself though the stress of days like this.  There are enjoyable aspects to them, but these mostly involve an element of me fooling myself that I am important, which is paramount nonsense.

There are many others all working in the same direction.  I am a member of a very active Facebook group, Undiagnosing Emotional Distress, and I have learned huge amounts from the people in that group, and from many others in the national and international survivor movement.  All I would say to them is, if you ever get to events like yesterday's, please try to be calm and polite when you put your points across.  Otherwise, the professionals will switch off.  It is just like it was in hospital - if you fight you will be injected, if you work with the professionals the process will afford you, and us, more dignity.  I am a fighter, though I wish I was not.  Those of us who have been damaged by the system will perhaps always be angry.

Anyway.  Things are on the up.  We have Jonny Benjamin now, making mental health sexy.  He was there yesterday, with a film crew, helping people make their pledges to improve the system.  He is a good guy - he has put himself on the line by being open about his diagnosis, he is rational and calm and he is attempting to reform the system without criticising it.  Although, of course, his diagnosis changed from the dreaded 'schizophrenia' to the gentler-sounding schizo-affective disorder.  Maybe it will, or has, change again.  Such is the way of psychiatry.

I believe that Jonny working with the system, and the fact that he is so personable (let's face it, humans are more influenced by other good-looking humans - sad, but true) will make more difference to psychosis treatment than anything I could do or say.  I felt so stupid by the end of the day yesterday - for all my talk about how the diagnosis of schizophrenia was unfair and damaging, I can't help wondering how many people thought it was justified in my case!  I am rational and capable in my daily life, but I am afraid mental health events bring out the worst in me. 

In any case, the agenda for yesterday was set before any of us arrived.  For example, there are now financial incentives for NHS trusts to include physical health care in the treatment of mental health patients - yesterday was about working out how to implement such policies.  Other workshops were on primary care, crisis care, employment, and provision of mental health services for black and ethnic minorities.  These are all things that the government has already pledged to improve, as with the whole parity of esteem thing.  My inclusion, and that of the other 'experts' was similarly already decreed by the powers-that-be. 

As I said, I am going to step out of this sort of event now, but I do hope that others will learn from my mistakes yesterday - step carefully, speak your truth clearly, make your points quietly. 

Especially those who, like Lord Victor, hold high profile positions.  Otherwise you (we) risk doing more harm than good to the cause we are fighting for.


  1. Crumbs. What a summit. I'm going to read your news again and digest it a bit. I'll write back.Hang on in there! It doesn't sound a fully supportive environment. Anyway, I'll read your post again and get back to you. x

  2. I can really empathise with you regarding the desire to work for positive change in mental health services and yet also feeling flattened by trying. I agree that staying calm in a provocative environment is very difficult. I guess you were there to voice the thoughts of many people who have been troubled by their experiences which come under the heading 'care'. When you succeeded, it sounds as though your words were not appreciative of the whole picture of so called 'care' that you so obviously have seen time and time again. I think you are brave for going. Brave for making the summary. Brave to post about it. And last but not least, brave in your recovery from the summit. You're amazing! x

  3. Hi. Thanks very much for your kind comments. It made me feel better to read your words!
    I found your Time to Change blog - you are doing sterling work, so congratulations! Louise x