LIVED EXPERIENCE ENGAGEMENT IN THE SCOTT REVIEW
NAPIER UNIVERSITY 24 February.
GRAHAM MORGAN
Hello everyone
I am going to talk about lived experience engagement in the Scott review over the next twenty minutes and will focus on 3 areas:
· First of all my own involvement and how I have found the experience so far.
· Secondly how we have involved people with lived experience to date.
· Thirdly some of the issues I feel we need to address.
I am joint vice chair of the Scott Review. I have a diagnosis of paranoid schizophrenia and have been treated under a compulsory community treatment order for the last eleven years. I have experienced admissions to hospital over the last thirty seven years ranging from a few weeks to a few months, most of them under a section.
In my working life I have spent most of my time helping other people with a mental illness speak up for a more just and fair society.
I started first of all, down in England where we developed a user run drop in centre for young people, then graduated to Lothian where I was the first worker for an advocacy service called CAPS and then on to Highland where I set up HUG (action for mental health) which spoke out about how its members with mental health problems are treated and live their lives. Up there I also helped establish People First Highland which speaks for its members who have learning disabilities and did a small amount of work with ARGH which is a voice for people with Autism.
As part of my work in those years I was a member of the Millan Review and later on the McManus Review.
I now work with the Mental Welfare Commission; there we work with a wide range of people but the main communities I work with have been with people with a mental illness and to a lesser extent, people with learning disabilities and still less with people with autism, I have done some limited work with people with dementia but not in terms of finding out their more general views on issues, more their views of being individual patients on hospital wards.
When we talk of the legislation that applies to us I have met with around a 600 or more people with a mental illness to discuss our views on legislation around mental illness, of which you can find three reports on the Commissions website and maybe between 50 and 100 people with learning disabilities while my contact with people with Autism or dementia has been pretty limited on the legislation that applies to us.
I came into this review via VOX which acts as a National voice for people with lived experience of a mental illness and from that via a selection process our chair John Scott carried out and became joint Vice Chair late last year.
My motives for being a part of the review are very mixed. I have direct personal experience of the mental health act spanning many years and so of course it is of interest to me.
I have had contact with many different communities subject to the different legislations over a career spanning over 30 years and so feel fairly up to date with grass roots views on the mental health act but must admit my understanding and grasp of the adults with incapacity and the vulnerable adults legislation and the communities it applies to is much more limited than my understanding of the legislation around mental illness.
My motives for involvement? I wanted to be a reality checker as we carried out our review. The proposals that have been flying around in governments, the United Nations and by many policy makers and academics may be exciting and may possibly result in better services and lives for us but they are very poorly understood by people from the community I feel I belong to and even less by many of the other communities I occasionally come into contact with.
My personal wish is that when we have new legislation imposed on us, is that it has been debated and discussed in detail in our wider communities and has the support of most of us and so ends up being our legislation bedded in the reality of our lives and not the legislation of idealists and so ends up not as an imposition but something most of us welcome.
In order to do that we need a national debate. Unfortunately when I look at the language used and the ideas expressed around such things as the UNCRPD general statement, or about SIDMA and capacity, or fusion legislation they are often only accessible to people who have devoted a lifetime to looking at legislative change, not to the people who will be most directly affected by any change.
I am on the Review because I have lived experience, but I am not on the review in a representative capacity and despite my interest in it am not responsible for how our engagement with people with lived experience is carried out
I am entitled to reclaim half a days work a week in lost wages from the Mental Welfare Commission, where I have reduced my hours to give me time for the review, that helps because I am not rich by any means and could not afford to do this work otherwise. By solely being able to claim lost earnings I have no rights to sick leave, annual leave, pension, insurance or any other employment rights.
Sometimes I think it is honour enough to be involved in the review without thinking of reward however when we get to this degree of contribution and responsibility and the need to support the contribution of people with lived experience, I think I am more inclined to look at both recompense and the whole range of issues that need addressed for our involvement to be the best possible that range from payment, expenses, childcare, equipment and training in areas where we may lack skills or knowledge and of course help with the emotional cost we may incur when working in this sphere and may doubt our ability and knowledge and capacity to contribute as equals.
Personally, I hope that government one day looks at what I might call the disability or mental health pay gap in work such as this and wider involvement issues when people join independent reviews and the complex web of involving people who may have no wage at all in exercises like this.
My motives for being on this team? Sometimes I think we might be transformative. We seem to have a government that wishes to project a rights focussed image and which preaches all the right messages but when I look at the degradation of services over the last few decades and the impact of austerity and welfare reform on our community I feel apprehensive and worry considerably.
I am worried that, paradoxically, we may create a rights based legislation that unless it is underpinned by resources, culture change and huge investment in our communities will serve to further disadvantage the people I spend most of my life with and with whom I try to create a better life.
When I was on the Millan committee I hated every moment of it. The sense of responsibility and the knowledge that what we did would have a far reaching effect not only on my own life but also on those I love and care for left me with many anxious and sleep filled nights. This process is a step forward in involvement since those days, but i worry about the wider involvement of our communities, when the decisions we take may have a profound effect on people who are unaware of what is happening.
This knowledge affects me greatly and is one of the reasons I hate waking up at 3.00 in the morning to lie there and think about what might happen if we get this wrong.
I have been supported hugely by the secretariat and the rest of the team. They have put up with my anxious emails, my sometimes too strong opinions and sometimes my limited ability to grasp the point or accept certainties around our identity and models for our treatment that other people accept without question.
My position is very public and some people, who call themselves activists, object strongly to what I do. Their constant harassment on twitter and by email have had a profound effect on me. This, combined with the responsibility that I feel comes with this work was, I am sure, a major contributor to the fact that I had to go off sick from my paid job and stop work with the review for the 3 months leading up to this new year.
Increasingly I find the mantra ‘Nothing about us without us to’ be trite and unhelpful. Of course our communities should be central to this legislation but who is us? My experience of a condition called schizophrenia that I don’t even think I have has few parallels with a person with profound learning disabilities who cannot speak and needs their every need supported and neither is there a parallel with a woman with dementia in a psychiatric hospital who is convinced she can manage at home but cannot remember that her house no longer exists and her husband is dead. Or likewise, with an autistic person who experiences seclusion and restraint as an almost daily reality. Saying we have a common link of disability and can speak for each other is sometimes harmful.
We have reached the point where I will talk about some of the ways in which we go beyond having people like me as joint vice chair and look at what we have done to involve people with lived experience throughout the review.
One of the key things we have done so far has been to concentrate on the experience of people with a mental illness. There was a feeling that the Rome review and the review of the adults with incapacity act had already had considerable contact with the learning disabled, Autistic and dementia communities and that we needed to catch up with and involve people with lived experience of mental illness first.
I worry to some extent that this has skewed the membership of our groupings and that we will need to work on this now that we are trying to involve people from those communities as well as working out how that involvement will occur.
We try to have fifty percent lived or carer experience throughout the review and on the executive are recruiting another person to maintain that balance.
We are still not quite meeting that ambition on our advisory groups, however most of the lived experience membership has been drawn from advocacy groups or support groups and so hopefully many of these people have a wider knowledge than their own personal experience.
We are also creating a lived experience reference group from which members can hopefully go back to their peers to discuss some of the key issues we are yet to resolve or find consensus on.
We carried out a call to give evidence which was meant to include face to face consultations with people with lived experience and their carers, however this occurred at the same time as lock down occurred and so we only managed about 3 face to face meetings before we migrated to zoom. VOX; the national voice of people with a mental illness had managed to speak with or involve ninety people in the evidence gaining period but they too were constrained by covid with the groups they could speak to. Many of the peer groups and advocacy groups who would have given more detailed evidence were busy reorganising themselves and supporting their own community at this time also and so could not contribute as they might have done in different circumstances. However the evidence we did received came from 157 people or organisations of people with lived experience or as carers.
Over the months since lock down occurred we have consulted and involved a fair number of groups on zoom, particularly members of Bipolar Scotland support groups which has been very helpful but of course does not include the numerous people from our communities who are digitally excluded.
We are creating a peer group of members of the review who have lived experience to provide mutual support for each other and share ideas about involvement.
We are also trying to set up a network of advocacy and peer groups whose networks we could tap into when we need a wider debate, that is also a work in progress which combined with the reference group will hopefully help us expand the conversations we need to have into a much wider sphere.
We also need to consider all the implications of involving people from learning disabled communities, dementia, autism and others for future involvement.
I will wind up with some issues that I still think we need to deal with:
This review is massive!
We are dealing with the key legislations that apply to us when we are at risk of being detained or treated and cared for against our will, but because we have been asked to consider economic, social and cultural rights, we also have to think about all the other rights issues that affect our communities; this is everything from welfare benefits to employment to housing to health care services and the daily discrimination and isolation so many of us face because of who we are and how we are seen
At the same time are trying to deal with huge paradigm shifts about rights and services that most people in our communities are not even aware of.
I haven’t a clue how we can ever provide answers to this wide range of issues that will move us forward in a sensible and helpful way.
We are meant to involve all the different communities affected by this legislation. How on earth do we do this? The views and experiences of carers are often different to those people with lived experience and those of people with psychosocial and intellectual disabilities can be conflicting especially as almost no one uses these labels to describe themselves in this way in this country.
The experiences within our multitude of different communities are very variable. The national voice of, for instance, the learning disability community on detention is at odds with that of the majority of the mental health community and it’s national voice.
Our ability to get to and hear from the people most affected by these issues is compromised by the fact that collective advocacy has often only had token support and has not always been able to reach the diverse membership it should have been able to and therefore deliver an effective and broad voice on the issues affecting us.
This is combined with the fact that these are issues that carry a massive emotional weight and that some groups, in their passionate desire to create change, pay little attention to their behaviour and conduct and the effect that it has on others and by doing this frighten and alienate many of the people whose voice we so need to hear from and incidentally take up so much time with workers and policy makers that the actual work gets distorted and delayed.
How do you recruit that rare person; someone who is in touch with a wide, wide, variety of opinion and experience and manages to balance these opinions and also has the confidence to give views based on this but also influenced by their own experience and intellect?
I have long wanted to see the legislation we end up with to be understandable and agreed by the great majority of people who are affected by it and yet I don’t think I have ever been able to plough my way through the Essex Autonomy project Three Jurisdictions reports – making that accessible to your averagely informed person would be a daunting task; making it accessible to someone whose intellectual abilities are severely impaired, sometimes feels beyond me.
As we involve more lived experience communities in this exercise we have much work to do. We do not all understand or even accept each other’s disabilities and experiences and visions for the future, that, in itself, is a huge potential barrier.
I could go on with a list of issues around engagement and so could many of you, but I will finish with a meeting I had recently with a group of people with lived experience of severe mental illness because they distil the issues for me:
They had never heard of the UNCRPD. Most didn’t know they were seen as disabled. They did not know there was review of the current legislation and had only a sketchy grasp of the current legislation that applied to them.
They were grateful to hear about some of the issues that might be proposed and might come about. We concluded the meeting and they said;
“We are only 9 people – it is great that we now know more and do please keep us informed but what about the thousands and thousands of other people in our area who may be affected by these changes; who haven’t a clue that they might happen. How will they find out? How will they have a say?”
That really brings me up short as does the fact that when I worked with hundreds of people in HUG (action for mental health) they regularly selected the priorities we should be looking at. These tended to be the treatment and awareness of young people, welfare reform, austerity and stigma. Reform of the mental health act was so far down the list of priorities that it almost didn’t appear, we looked at it because people in Government looked at it and academics and policy makers looked at it and people in the United Nations said it was important but our members usually had far more important issues in their lives that they wanted us to address. That is also something we should remember when we look at engagement.
So finally being very, very, glib –what will happen is desperately important and that impacts on me my friends colleagues and yet many people have completely different and very passionate takes on what should happen to me and others, we all need to be mindful of the diversity of opinion we all have.
I am delighted and honoured to be a part of this review -I will still hate it – I will still wake at 3.00 am and 5.00 am and worry about it. I will still have people who will blame me and people like me for the things that will inevitably go wrong – long after the review ends I will worry.
I have a question I now need to ask myself. When I joined this review I wanted to ground us in the daily reality of our lives; I was very worried about the consequences ill-informed idealism can have on my community. I had a lovely conversation with Dundee Healthy Minds the other day; we talked about psychosis and imagined that we were really listened to, that we could look forward to what we can and should have. It was invigorating and exciting: the thought that our lives could one day be so much better. Maybe I need to leave the anxiety and worry behind and reconnect with those heady days when an opportunity like this would have astonished and delighted us. The knowledge that if we just look at life a bit more widely and openly and act on that, that our friends and colleagues and family members would really begin to believe that change for the better is really possible.
That is my personal learning bench mark, the need to reignite my enthusiasm for the possibility for change for the better. My challenge to myself is to shift from trying to preserve what we have, to believing we could have lives that are so much more better and that this might be the ideal opportunity for that to happen.
Thank you
For more information on the Scottish Mental Health Law Review do visit : https://www.mentalhealthlawreview.scot/
(Photo: my bookcase!! 2021)
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