World Conference of Social Work, Education and Social Development.
DUBLIN July 2018
The Mental Welfare Commission for Scotland: upholding the rights of people with a mental disorder – making user and carer engagement key to its work.
Hello everyone
Thank you so much for coming to my workshop I am very happy to be here and proud to be able to talk about my work.
Just to set the scene:
I will talk for about 20 minutes about the role I have in the Mental Welfare Commission, we will then have 20 minutes of questions and discussion and then a final 20 minutes discussing how we can increase or improve the involvement of service users and carers in our own organisations and countries.
First of all
Who am !?
My name is Graham Morgan, I work for the Mental Welfare Commission as an engagement and participation officer. A condition of my post is that I have personal experience of mental illness – I have had a diagnosis of paranoid schizophrenia for the last 27 years and have been compulsorily treated under a community treatment order for the last ten years.
I have worked for most of my life with groups of people trying to improve the way people with a mental illness or mental health problem are treated. I started off when I was about twenty in Sheffield in England as a confused and anxious young man just recently released from one of the old mental hospitals where I helped create a centre for young people with a mental illness run by young people – I remember that McMurphys, as it came to be called, incorporated furniture and wood liberated from the very asylum I had been released from when it finally closed.
I then moved from England to Scotland where I worked for many years in mental health advocacy organisations near Edinburgh and for 20 years in the Scottish Highlands. The work we did in HUG in Highland was exciting and fun, we took drama’s round schools to thousands of young people to increase understanding of mental health and illness, we were one of the five partner organisations of the See Me alliance which is Scotland’s anti stigma campaign, we were members of the Millan review which paved the way for the 2003 mental health act and then the McManus review which paved the way for the 2015 mental health act. We had an International presence: sharing how we worked in Catalunya, Romania, Portugal, Poland and the Czech Republic. We worked in prisons for short while and we worked with parents whose children had been taken into care, we set up a seperate voice for young people around mental health called ‘SPEAK this is me’ and tried to get our message across to services and the public in a variety of ways including in film, art, poetry, writing and with many media appearances. We did a whole heap of things which I would be more than happy to talk about later.
All of our work was and is based on the voice and experience of our members – it is their participation and experience that we are all about - we were people with a mental illness speaking out on behalf of people with a mental illness trying to create social justice for our own community.
It was a lovely job and for twenty years I was the manager of HUG before resigning and moving south to the central belt of Edinburgh. This wasn’t because I was disillusioned with working with HUG, in fact I still do voluntary work with them but was because I fell in love with my partner Wendy and all her family live near Glasgow – so we had the choice of one or other of us moving if we wanted to be with each other and that person turned out to be me!
Now I work for the Mental Welfare Commission for Scotland part time as an engagement and participation officer (lived experience) alongside my colleague Kathleen who has lived experience as a carer. And it is a lovely job and an exciting and challenging area of work that we work in.
It is this that I am going to talk about but first I need to let you know what the Commission is and what it does.
Every country that has signed up to the United Nations treaty against torture has to have something called a National Preventative Mechanism to monitor activity in its own country to ensure that people who are detained for any reason are not ill treated. In the UK a number of independent organisations make up our NPM – we are one of these. Ultimately this reports to the UK government and to the United Nations Committee Against Torture.
However in Scotland the Commission has a wider role, we have existed in one form or another for many, many, decades and have as our mission to uphold and protect the rights of people with a mental disorder, by which we mean people with a mental illness, learning disability, autism, dementia and acquired brain injury.
We do this in many ways.
We
Monitor the legislation in Scotland that applies to people with a mental disorder and make recommendations for any changes needed
We provide an input into good practice and national policy
We carry out investigations when tragedies occur as a result of the way people have been treated
We visit people using psychiatric hospitals and care homes to check their care and treatment’
We carry out what we call themed visits – where a community or issue may merit particular attention
We monitor the treatment of people on guardianship orders
We gather all the data around people who have been detained under the mental health act
We have a network of second opinion doctors to give their opinion on the necessity or otherwise for someone’s detention under the mental health act.
We operate an advice and information line for people with lived experience, friends and family and professionals
We have a total of fifty staff, of those twenty are called practitioners and are usually nurses, social workers and doctors.
Ultimately we report to the Scottish Parliament – we are a non governmental public body and although we have no formal powers to insist on change do have considerable influence.
I find it strange to be a part of this organisation, when I first encountered it many, many years ago as part of a small advocacy group I found it extremely formal, intimidating almost, a place of dark suits and solemn expressions, not a place that I wanted to spend any time in, almost a place that I feared.
In fact in those days, when the Commission had the power to overturn sections we used to deride it, seeing it as such a strong part of the establishment that we had no faith at all that it was interested in the experiences and opinions of people like us who were interested in justice and a voice for our community.
But life has changed dramatically in Scotland over the last few decades; the involvement of people like me in decisions about our care and in decisions about how our services develop is now taken for granted. We have a range of advocacy organisations spread throughout the country whose purpose it is to speak with and for individuals and groups of people with a mental disorder. We have an energised and active population of people who have experiences of mental ill health who are vocal and active: this community awareness, this understanding that we have a right to help, a right to be heard extends across the country.
In fact the subject of mental health is on everybody’s lips now that the Royal Princes have been so outspoken and passionate about the subject in their personal lives and across the media.
And of course why wouldn’t we include people in their care and in the organisations that help them? It is after all their lives that are being affected by treatment. We need involved both morally in the sense of the old saying of “nothing about us without us” but also in the purely practical sense that although there are professionals with huge expertise about what does and doesn’t help us, we too have incredible expertise and knowledge that is a rich and valuable source of intelligence.
Just take myself as a brief example – My first experience of mental health care occurred when the old asylums of England were one of the main sources of treatment, when community services were in their infancy and that really was quite a bleak time, but it has extended to the present day where I live a vibrant and joyful life with my family and friends albeit with restrictions and treatment but a life that I would not have had if we were still providing mental health services in the way we were 35 years ago. I am lucky, many of my friends and acquaintances are not so lucky but also have valid and important experiences and reflections on those experiences.
And of course the Mental Welfare Commission who I now work for has also changed, it is still a place where it is common to see people in suits and it is still a place that has a dignified air to it, the sort of organisation that would not rush to public pronouncements unless it were very sure of its ground but equally part of the structure of the Commission means that by law it has to have people with lived experience involved in it and part of its culture is such that we now have an entire, if small department, devoted to involving people with lived experience in its work.
That department consists of our Director Kate, myself as a person with lived experience of mental illness and Kathleen with lived experience as a carer.
Well that is a lot of information to take in, I will try to carry on slightly more plainly and slightly more slowly to describe the work that Kathleen and I do.
I know what it is like to be in hospital, I know how much you can yearn for the fresh air, I know how sterile and clinical and intimidating it can be and equally how terribly boring and sometimes frightening a stay can be. I also know enough about some other parts of the world to know that we are pretty lucky with what we get here. In the Commission we visit every psychiatric ward in Scotland regularly. Kathleen and I are on the teams that goes on some of these visits and just like everyone else we have access to all parts of the ward, to patients notes, to staff and to any patient or carer who wants to speak to us and while the other members of the team may have an expertise in how care should be provided from their perspective as social workers and nurses and doctors we have an expertise that often immediately connects us with patients and carers. Frequently on visits, I meet fellow patients who are amazed that we are part of the team and who almost visibly relax when they are with us with that feeling of knowing that we will almost certainly know just what it is like to be in such places or to have a loved one in hospital with all the emotion and anxiety that can come with knowing that someone you care for with all your heart is in such a terrible state.
We are also a full member of the team on our themed visits although we have an additional role where we meet people with lived experience and family and friends prior to a visit – we meet them in this way because we want to find out first hand beforehand what issues are priorities to people experiencing what we are trying to find out. In that way we can structure our visit around what people actually think is important, rather than what we think is important. So when we carried out a visit around homelessness and mental health we met homeless people to start with to find out what was important to them, when we did a visit on the experiences of people with a diagnosis of Borderline Personality Disorder we met people first of all to find out what priorities they had for what we should be looking at later on in the formal visit, and we did the same with people with dementia in community hospitals and with people with autism.
On the actual visit we carry out interviews and focus groups in the same way as the rest of the team, write up the results and are increasingly involved in helping write the final reports and in contributing to the overall project from beginning to the final publication of the report.
When looking at good practice guides and policy issues we have established a network of groups and individuals who we consult and involve in all aspects of the work, so with our Rights in Mind guide, we were a part of the project team, we gathered rights issues from people with lived experience, we helped organise a nationwide consultation exercise on the subject with people with lived experience, we commented on the draft documents and recruited service users to be filmed on accompanying dvds about rights and then recruited people with lived experience to speak publicly about the publication and have been publicising and passing out the reports ever since in talks about rights with user groups, social workers , students, equalities committees and so on and finally have gathered people’s views on the project now that this stage has been completed.
And it is this; basing our work on what people tell us is important, making sure that when write our report although we comment on the obvious things like our right to advocacy and appeal when we are detained we also comment on the small humiliations like when our possessions are searched on admission to hospital that makes sure that we base our work on peoples real lives.
We do similar with policy issues around welfare benefits where we have provided briefings for our government and given talks to the fledgling workforce of the Scottish department of social security and to do that we tap into the thriving independent advocacy network of people speaking up about mental illness in different parts of the country as they are an ideal way of contacting engaged and energised people with personal experiences and things to say.
Equally we have worked with people with lived experience on advance statements and are now about to work on care planning from a lived experience perspective.
To be detained because you have a mental illness is almost always traumatic, I will never forget being chased down the corridors of a hospital with all the alarms blaring because I had run from the ward. Our freedom, our dignity, our right to life and health are complex and hugely emotive issues –over the last two and half years we have been involving service users across Scotland in discussions about detention, about capacity, about supported decision making and have produced a number of reports on this.
We encourage the wide range of views that people have, we try to gain agreement from the groups we consult when we finalise the reports. And it has resulted in us giving talks on detention at the United Nations, at the 2018 Transnational Human Rights Law summit and at the English review of the mental health act and at other forums. We are likely to have a paper on this published in the International journal of law and psychiatry which I am finding quite exciting as this has never happened with me before!
All these descriptions are ways of involving people with lived experience in the actual work the Commission does; making sure that when it creates reports, makes statements, carries out visits, produces guides and videos that it has consulted with and involved people with lived experience.
However there are other forms of involvement – if we , as people with a mental health problem are to feel a sense of belonging or indeed ownership with the Commission we need to know that it works in ways that respect the lives and wishes of people with a mental disorder.
To do this we have an advisory group that includes people with lived experience and their loved ones and where we can, we provide support to them if they wish this. Our board includes directors with lived experience and our business plans are informed by engagement events where we gather the opinions of people from across Scotland in an event to look at our priorities. Equally, we are constantly seeking feedback from groups about the work of the commission and what people want it to do.
This is not always the most pleasant task, I find it strange when a nurse addresses me as sir but even stranger when a patient does too. I find it upsetting that people still feel that they have to dress up if they are to meet someone from the Commission and feel a sense of empathy with advocacy groups when they feel disgruntled, say that treatment has so far to go to be remotely of the quality we would be proud of, say “Why isn’t the Commission making this happen? Why isn’t it so much more powerful and visible?” so much more effective in creating change.
And Kathleen and I are part of this – we are here to help stimulate the cultural change that means that one day people with lived experience will look on the Commission with a sense of recognition and an appreciation of what it has done because it has reached a point where it can demonstrate that it involves people at all levels and in all aspects of its work and that this is not tokenistic but an integral part of its working methods.
Lastly and this is by far the most privileged part of our work. Kathleen and I are here to just be ourselves – to use our personal experience, whether that is as a carer of three sons with a mental illness and sister with a learning disability in Kathleen’s case or in mine of having what people call a mental illness.
We are meant to reflect, our talks are meant to reflect our personal opinions as well as those of others. When we are nattering to our fellow workers over coffee our presence, our visible reality is all part of informing changing and making the inclusion of and involvement of people with lived experience a vital and natural part of the Commission.
There is something wonderful about that freedom, in the past I have always had to temper my voice with that of my friends and colleagues, ensure that what I do is in some way representative but here I am expected to think how things would affect me personally: what would sitting in a ward with nothing to do be like? How would I like to share a dormitory when I am very distressed and those around me are? What do I actually think about rights? How did I find my last tribunal? Why do I really write an advance statement? and more practically how welcome do I feel in the Commission? How much does the Commission really base its work on that of people with lived experience? How accessible are our reports and materials to people with lived experience?
And what do I need to do so that the people I would prefer to go to the pub with or drink coffee with rather than interview or involve or empower do not any longer worry that they will have to go out and by new clothes if they are to have a one to one meeting with something as important as the Commission. Will instead say “Of course you should go there, they get it, they understand, they are on our side.”
Thanks for listening.
For more information on the Mental Welfare Commission visit : https://www.mwcscot.org.uk/
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