It’s All About Us, Or Is It? The Involvement of People with Lived
Experience in the review of Scottish Mental Health Legislation
Graham Morgan, Scottish Mental Health Law Review, Edinburgh, Scotland
June 2022. World Congress on Capacity.
Hello everyone. My name is Graham Morgan. I am a member of the executive team of the Scottish review into mental health legislation. I have a diagnosis of Schizophrenia and have been subject to compulsory treatment for many years. I head up our workstream on coercion and involuntary treatment but am going to give my personal perspective about lived experience involvement in the review.
When I first showed an interest in this review I was arrogant enough to think I was ideal for it. I have probably consulted and talked with more people with lived experience in Scotland about compulsory treatment than anyone else: upwards of 800 people. I have personal experience, only a few people have been on a CTO for longer then 12 years. I have a background of working with my peers to speak out about our lives and experiences which has meant that I can sometimes speak from a broader and sometimes more objective perspective.
However the moment I finished my call with John Scott, our chair, to join the executive I knew without a shadow of a doubt that I would loathe this review; not because of the people I would work alongside, they are lovely, but for reasons that I shall now try describe.
I started speaking out forty years ago. It was a time when the thought of people like me having a valid view and the right to a place in the discussion of policy and law was unheard of: pretty much ludicrous.
Memories like that linger and have not yet completely disappeared. We have a need to be a part of the debate but we are still gaining perspectives and the skills to engage with people like you. The balance of our personal story and its power compared to a broader picture is a hard one and needs sensitive discussion
I worry about that myself. My role here is not an academic one or a professional one but then those roles rarely exist in isolation either. It feels like there are no boundaries for me and no safety cushion or place to retreat to. Just now we are discussing the evidence for the effectiveness of Compulsory treatment orders. I know mine keeps me alive but I also know that there is a wealth of evidence that measures like this might not work.
To say these issues are personal is an understatement. The decisions we reach will literally be a matter of life or death in my own life. Despite this I need to be able to put aside my own views and experiences; the views of those I love. Instead, possibly; suggest to our executive that these forms of treatment might be unnecessarily restrictive.
These debates are not the meat of dinner time conversations, or reflections on how we practice or opportunities for new papers They are the essence of my life and the life of the people I live amongst.
And I feel a tremendous responsibility. People say we will not be personally responsible for what happens but in many ways we will be. I feel a deep sense of belonging to what I call my
community and know that what we are discussing may fundamentally change the lives of those I eat with, walk with, and love.. I know we are doing all we can to make our lives better.
I love the conclusions we are coming to but worry that if only lip service is paid to what we suggest by government or that we make basic mistakes in our thinking and reasoning that my friends and others will suffer terribly. That those who value freedom more than life may still have to have it taken from them and that those who beg for help and are told they are free to do as they wish because they have capacity will continue to die as a result: that words like dignity, rights, autonomy, safety and belonging will remain just that; words tucked into documents that can be distorted in the name of budgets, goals and efficiency.
I doubt everything I do and say. I feel insecure about people who have qualifications or represent an organisation or have an acknowledged status or have such a high salary that everyone seems to listen to them. I have no degree, no profession to which I am accountable or from which I can get support. I vaguely know a randomised controlled trial is a good thing. I vaguely know that when I consult people and write reports, that my reports are rarely of the rigour that would survive academia.
I am also painfully aware that I constantly say things which we smile at and agree but which I discard as needless naivety. But, I still think if we knew how to section with love and compassion, or created a society in which those who are marginalised could begin to feel a sense of trust, ownership and belonging then we could shift from the rhetoric of oppression, exploitation and exclusion to one where we believe in each other and respect each other and work towards that point where compulsion and degradation begins to drop away and those still vague concepts such as dignity become universally understood and expected.
That was a passionate start!! I think it may be seen as a reasonable indication of the pressure we and I include myself in that word, ‘we’, put people like me under when we agree to participate. I will now try to convey a different and very alien perspective to the involvement of people with a mental illness. Anxiety and uncertainty are a given in my life. However much people are kind and respectful to me I always doubt they mean it. Time and again members of our secretariat and executive have reached out to me and time and again I think I am an irritation, an extra and very demanding part of work that they had not factored into the stress of their job. Maybe that is a given with work like this but maybe it should also be a given that people like me subject to what people call delusions will also come up with strange thoughts that other people don’t understand and which make this process even more complicated.
Some of my stranger beliefs are bound up in this very review. They are complex but mean I always fundamentally doubt the value and legitimacy of my presence. These are some of the things that can make my nights sleepless.
These are the real, unpredictable, very damaging consequences of involvement and lived experience and yet the illustration of why, despite the pain, it is vital to have our involvement and our voice. Reviews like this are about our lives; the very fundamentals of our lives. Few people have the depth of insight or perspective that those of us that live it have. Our involvement, whatever pain it causes us, is vital to help make sure we end up with the legislation and lives we need and deserve.
We have taken a rights based approach to this work where the involvement of people with lived experience is integral to everything. Addressing rights and participation is part of the everyday life of both the secretariat and members of the executive committee. Each member of our team might have a take on involvement that is different to mine.
The involvement of people with lived experience in this is something we would all want. Almost everyone in the world of disability is fully aware of the ‘Nothing about us without us’ mantra. And of course it is so necessary! If we are talking about legislation that will fundamentally alter the way people are treated and if we are going to bind it inextricably to the rights we all have, then not to involve us would be absurd, just as it would be if we didn’t involve those people who practice under the law or who decide and reflect on laws.
We did a good job in the Scott review but a good job considering…
We were under resourced; that is a huge issue when you are involving people with lived experience.
Trying to involve people in places they feel safe in and comfortable was hugely hindered by the lockdown that occurred just as we started our major consultations. We lost a huge amount by not being able to meet people with lived experience in person, to attend their groups where they felt comfortable and at ease.
Covid and the demands it had on the country meant that significant financial and personnel resources which we would have needed to use to support people to take part in many of our events had to be diverted elsewhere.
In accordance with the PANEL principles we wanted fifty : fifty representation of lived and unpaid carer experience in all the key forums in which we gathered evidence and gave opinions.
This was the case in our executive committee, with myself and Karen (a carer) also acting as joint vice chairs, it was also the case in many of the advisory groups we established to gather and discuss the issues we were looking at.
Athough many meetings stopped because of covid we did manage to continue with online meetings with many groups. This was easier with people with a mental illness; they are a digitally excluded group but not as much as those communities of people with dementia or learning disability.
We established two reference groups; one of practitioners and the other of people with lived experience. This group included unpaid carers and also people from learning disabled, autistic, dementia, deaf and forensic service communities. The two groups discussed the same subjects but due to access issues, information was presented differently.
The secretariat also set up meetings to gain the views of less heard from groups and commissioned Vox, a national organisation of people with mental ill health, to do the same, with face to face and on line meetings.
Despite this, accessing the wide range of lived experience stakeholders was not as good we would have liked.
Our lived experience reference group was a vibrant and friendly group which carried out some wonderful work. But with varied collections of people and experience there will always be some issues.
We were discussing extremely complex subjects and contemplating huge shifts in the way we thought about the law and how people are treated as well as dealing with aspects of international law that remain disputed and uncertain to this day. To make all this accessible to a wide community of people was probably more than we were resourced to do.
Some people with lived experience were well used to meetings and consultations, others were new to all of this and had no background in the theories or practices by which the law and services currently work.
The relationships that can develop when sharing a coffee or staying in a hotel together were impossible to create and so although people met over many months there was little chance to get to know each other personally.
Some people felt terribly traumatised by their experiences. Some had lost loved ones to mental illness or dementia and felt this was partly or wholly due to failings of the services there to support them. Having meetings where we were considering the merits of compulsory treatment with people who felt it had destroyed their lives, amongst people charged with carrying out or authorising such treatment as part of their jobs is not always an easy combination and meant that some groups only reached a few conclusions. Despite this, these conclusions were fundamental to the progress of the review.
There are also some practical aspects to participating:
Some people could arrive at meetings having spent the night awake caring for a loved one and trying to find them emergency help or suddenly not be available due to a crisis at home. We could spend months absent due to illness and sometimes find difficulty in participating due to anxieties we were experiencing, not only as part of the review, but as part of our daily lives.
Positions such as this are justly seen as ones of honour and privilege. However it can mean people do not gain any additional payment to reflect the increased responsibility this review carries. I think perhaps for people on moderate to very low incomes, we need to consider some additional material reward as recompense for the effort that we put in.
The activity of people who claimed to be human rights activists harmed me. I was not their only target but they harassed me and my family for months by email and via social media, This partly led to a period of sick leave where I not only considered resigning but also felt deeply suicidal. Luckily, I now block their social media posts and emails which is a huge relief
Sometimes my health has been very fragile but recently my health has been better and therefore my ability to work with the review has been better.
As I began to play a much more active role in chairing our involuntary and coercive treatment workstream, life began to feel easier at the review. I worked much more closely with two members of the secretariat. Having people who overtly acknowledged mine and other people’s expertise in this area was wonderful.
Having feedback that asserted my value time and time again and being told there is worth in my thinking was also invaluable. Having the morass of literature and knowledge curated into accessible and hugely powerful papers gave structure and validity to a task that often felt and probably was, beyond me.
A review like this needs to have individuals with direct experience able to speak openly about their and others opinions and experiences but it is also needs a society where we have disabled peoples organisations in a position to canvass wider views and to take these conclusions, to a place where our community feels that it has been fully involved.
Finally; We have a wonderful collective voice in Scotland but would manage a great deal better if it was more established, better funded and more secure.
(Photo: near the Clava Cairns June 2022)
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