Lived experience informing the Scottish Mental Health Law Review

REFORMING THE MENTAL HEALTH ACT (MHA) IN ENGLAND AND WALES:

THINKING CRITICALLY ABOUT GOVERNMENT PROPOSALS

March 2022

Lived experience informing the Scottish Mental Health Law Review

Graham Morgan (and later Alison Rankin and Karen Martin)

Hello

I am meant to be talking about my involvement in the Scottish review of mental health legislation. I am joint vice chair of this review alongside Karen who is also here today.

Trying to reflect on my personal involvement in the Scott review in five minutes is very difficult indeed and reminds me of the need to write something more extensive about such positions in the future.

Before I get onto the negative, let me talk of the positive – we, as lived experience people comprise fifty percent of the executive committee of the review; the final decisions we reach will be determined to a great extent by us. Likewise, we strived to have fifty percent lived experience representation on our numerous advisory groups and in our current work we have a practitioners reference group but we also have a lived experience reference group of equal importance. I, as a person who has been and still am sectioned, chair the involuntary and coercive treatment workstream of the review which in some ways, is pretty crucial to a review like this. To me this is astonishing; turns my past experience of power, policy and involvement on its head.

However our involvement has not always been ideal; mainly because the secretariat has been so under staffed but also because of covid but perhaps more because of the way roles on government reviews like this have traditionally worked rather than anything to do with the review itself. Where, maybe the honour of the position is not compatible with the fact that some of us do not have the freedom of our finances to do as other people with more status can do.

There are of course some things that I personally, found that are perhaps inevitable and which we may need to think of when involving us in an individual capacity and relying on our own expertise and resilience. Despite having consulted and spoken to hundreds and hundreds of people before and during the review about the issues we are looking at and having been a member of the Millan committee and the McManus review I have always doubted my ability and the credibility of my presence at the review, it has made me anxious and insecure. I have no profession, qualifications, no degree, nothing to back up my position.

In addition I don’t think we have ever fully considered what reasonable adjustment means in these positions. It is great that we wanted to have fifty percent representation of people with lived or carer experience on the review but if that is genuine it will also include people like me who still have problems. I have a diagnosis of paranoid schizophrenia and am still on a CTO. For much of the duration of the review, in keeping, with what might be my illness, I have felt that I have been hated and despised by everyone I have been working with and in keeping with some of my beliefs which are that I think I am a part of the ending of the world; I tend to think we are bound to bring about legislation that will bring further suffering to the community I feel I belong to.

Such thoughts bring a great deal of uncertainty to me, as does the knowledge that we will be asking for fundamental changes in legislation. I worry that we glibly talk of reasonable adjustment for people like me and yet do not really know what that is or how it would work.

Although I am part of a community of people with a shared experience; the need to think and speak independently is central to the review and is not linked into the support and representation that might come from being a member of national democratic lived experience groups, this has implications for both our national voice and also our own wellbeing.

I worry that if we get this wrong; people who are my friends and family members, will either die or will be cruelly restricted. That responsibility, even if it is a collective one, sits uneasily with me.

On a practical level I reduced my working hours in order to have the time to do the review and have had my lost wages replaced, with the review paying me the same rate I would normally get for the lost hours I work. I wonder about this; there is of course the honour of participation, but I wonder if we should also maybe gain financially from the huge amount of work and responsibility we take on for things like this. In my case, maybe at least I should have had access to sick pay, holidays, pension, insurance and work breaks that are paid for and not have had to be responsible for filling in the tax returns at the end of the year. However I think this situation was maybe just as much caused by others as it was by the review team.

In a moment I am going to talk of the positives but my last negative came from the harassment that I and my family experienced from some people who call themselves activists, who do not agree with my views or my presence on the review. It was hard to bear and coupled with other pressures in my life meant that I spent three months unable to work and suicidal. I still shrink when I hear they have posted another tweet with me copied into it, even though I am now allowed to block them and often do not see those tweets anymore.

Despite the anxiety I mentioned earlier; since the summer I have been working closely with Simon from the secretariat in my position as chair of the involuntary care and treatment work stream and with Isla, on the collective advocacy element of the accountability work stream. Their attitude and support has cut through my uncertainty and paranoia about my role and left me feeling excited and full of energy for what we are doing. I find it hard to describe just how much their support has meant; having someone prepare evidence and materials for comment, willing to listen, keen to hear my opinions and determined to not overly influence me with their own opinions has been a liberation.

I have felt that what I think and say is valid and important. I have had help when I have been in tears after some meetings and I have had gentle support when some elements of the outside world have interfered with my ability to keep calm and reasonable. When I make suggestions about how our consultations can be improved or elements of the review carried out; these thoughts are recorded and I know they will be passed on. When there is challenge to elements of the workstream I am responsible for, I am asked for my opinion and thoughts.

They treat me seriously but we also laugh and natter. They have been invaluable when we have got to tricky bits that I am not sure I totally understand or have enough knowledge of or equally which I have a different opinion to others on.

Despite the assumption that I carry with me that I am despised by the people I get on the train with in the morning or the people I share a meeting with, I currently feel delighted to be a part of the review and excited about the conclusions we are moving towards.

Thank you.