Personal experience

It is Monday morning and time for my jag again, or at least I think it is. I got a note saying all appointments with my CMHT were cancelled for 12 weeks a few days ago but at the same time I have an appointment for today and I am on a community compulsory treatment order so I assume that I will get my injection in an hours time.

It is a hard time for all of us at the moment; in my small family we have so far been ok if a bit bored and frustrated. The children worry most I think, being young and yet old enough to sort of understand what is happening they have nightmares and miss their friends terribly. Dash the dog seems most affected; he misses his walks with all the other dogs and has started scratching himself awfully. But absolutely tiny problems compared to what many of you will be going through.

With my work on the executive of the review into Scottish Mental Health Legislation I feel frustrated. Just before lockdown I had been out with the secretariat on visits, including people with lived experience and their friends and family, in Edinburgh, Oban and Mull and had had a wonderful if sad series of conversations which were very helpful and confirmed a lot of what I thought we might be finding out.

I joined the Executive fairly recently and have personal experience of the mental health act. I have had a diagnosis of Schizophrenia for the last 30 years and have had a number of hospital admissions on sections and have now been compulsorily treated in the community for the last ten years. If you want a more detailed record of my views about this then do read my book START.

I have also been involved in, what might once have been called, the User Movement for the last 37 years. I set up a drop in centre run by young people for young people when I was in my early twenties and then worked in Lothian in my late twenties where I was the first worker for CAPS and helped establish a number of collective advocacy groups and also worked alongside the Royal Edinburgh Patients Council on their management committee and helped with the early days with Advocard, all the time helping create a voice for our community.

After that I moved up to Highland where is set up HUG (action for mental health) which quickly gained an international reputation for its work both in speaking out and in challenging stigma and in its work with young people. As part of that I was a member of the Millan Review and the McManus review which both played a major role in our current legislation. I also helped a person with learning disabilities set up People First Highland while I was there and played some part in the initial Highland Advocacy Strategy.

I have now left Highland; live in Argyll and work part time for the Mental Welfare Commission as an engagement and participation officer. As part of that role I am often in different parts of Scotland meeting groups of people with lived experience and sometimes their friends and family, finding out how life is in their communities.

Part of that work has involved a number of consultations with people on their experiences and views on compulsory treatment and capacity and then a consultation on how people can be supported to make decisions when they are seen as acutely ill. The reports of these two consultations are on the MWC website. I am presently writing up a report of people’s views on how people can find out what our will and preference is when we are ill and when we are well.

As part of the work on compulsory treatment, I have spoken in Geneva to agencies charged with protecting people’s rights when they have been detained and with the United Nations Committee against Torture as well as at the Kings College Transnational Summit on Human Rights and the Law.

Despite having a great deal of personal experience and work experience finding out peoples view on detention I come to this review with mixed feelings. The legislation that applies to us fundamentally affects our freedom and our autonomy but also our right to health and life and the whole host of cultural economic and social rights that apply to us. I very much hope that, despite the greater restrictions the virus is subjecting us, to that we end up with legislation that leads to a much, much, better life for those of us subject to it.

But and it is a huge but; there is such diversity of opinion from people about what we need. I know some people who think any form of compulsory treatment is an abuse of power and akin to torture but also I have met people who view the death of their children as a failing of the mental health system and feel that if they had been sectioned they might have lived. I have a superb quality of life but many of my friends live in poverty and live lives where friendship is rare and hope a distant prospect. I also hear people say “What is the point in legislation when we cannot even get the basic help we need?” Balancing these views and listening to these varied perspectives worries me. It will be hard to do and will be hugely emotional but at the same time it is a great privilege to be a part of this process.

Currently I keep in touch with the rest of the executive and the secretariat remotely and now that it is impossible to meet people face to face am working on my troubled thoughts on how the human rights model of disability applies to all the situations we can find ourselves in and on just what the key issues around our social cultural and economic rights are for when we establish that advisory group. I am still to attend a meeting of the advisory group we have established on compulsion but very much look forward to meeting its members once we are in a position to do so.

I am excited and at the same time apprehensive about this review, I hope it delivers what so many people want it to, I hope if it doesn’t meet everyone’s expectations that they at least feel they have been heard. I hope what we end up creating is based on the reality of people’s daily lives and is not dictated by fashion and the politics which sometimes make things happen and sometimes leave reality behind. I look forward to meeting as many people as I can, as part of the work of the review team once we are in a position to do so.      

by Graham Morgan

 

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