Second year student mental health nurses Stirling University
11 December 2023
Engagement and the Mental Welfare Commission
Graham Morgan
Hello
I am hoping to talk to you about what I do at the Commission and what it does. I am an engagement and participation officer (Lived Experience), I am a rare species mainly because I am often wandering around meeting people in different parts of Scotland. I am not sure how to make this talk interesting, so I am going to go off at a tangent. You will all know this background anyway but it interests me.
If we remember that the Commission is there to uphold the rights of people with a mental illness, learning disability, dementia and autism it is perhaps useful to think about why we have a Commission for such communities of people instead of say, for people with asthma or people who bicycle to work.
I think there are a number of reasons for Commissions. I was first admitted to hospital 36 years ago, the asylums of that time really did look like places out of a horror film, a huge dark building, wards with beds right next to each other; so noisy it was difficult to sleep. Holes in the walls, broken windows and doctors who seemed remote and powerful which they were. When we think of that time it is easy to see how the abuse in hospitals that so many of us saw on television recently would have been a daily reality back then.
It is no secret that when we have a mental illness, we can be deprived of our freedom, that even when we are not forced into treatment other people have power over us, and with just slight inflections in their voice when we are feeling desperate can make us feel totally miserable. It is also of course no secret that there is still a great stigma to mental illness, especially around such conditions as schizophrenia, bipolar and personality disorder and because of this we can feel excluded and inferior but it might be a surprise to hear in survey after survey that some of the greatest stigma is generated by those whose job it is to help us: the nurses, doctors, social workers and support workers in our lives.
And lastly it is no secret that when at our worst, our ability to speak up and be listened to and heard is suspect, what we have to say may be doubted and how we communicate can be deeply impaired.
Issues like this around freedom, power, exclusion, stigma, abuse and judgement do not happen so commonly with people with asthma or those who ride bicycles. So with the long and terrible history of poor treatment that has been meted out to us it is easy to see why we have needed organisations like the Mental Welfare Commission to protect us from abuse and poor treatment.
I am hugely grateful that the Commission exists but remember in the old days when I was a young and naïve activist that we were suspicious of and frightened of meetings that involved the Commission; the very organisation that was there to protect us.
Now that positions like mine exist we can see we are a long way from that time when those the Commission was meant to protect were frightened of it; alienated by it.
The Commission carries out much of its face to face safeguarding work almost entirely through the work of our practitioners who are there to ensure that their peers do not mistreat people like me but having people with lived experience and their carers as an essential part of the Commission; in fact having an entire department of engagement and participation whose prime function is to involve people with lived experience, friends and family in shaping the work of the Commission and in speaking out on the issues that affect us is a great step forward.
Kathleen who I work alongside and now Andrew are often told that part of our role is as agents of change and challenge. Sometimes we ask each other what change we are meant to create, what challenge is acceptable? But when you look at the history of the protection of people like us, our very presence is an act of change and challenge. Rather than having an organisation which solely consists of professionals who safeguard people like us from the actions or mistakes of their fellow workers; we have an organisation that is trying to place the voice of people with lived experience and their friends and family at the centre of its work. That action and the creation of our engagement department is very symbolic; when you look at the power structure and history I was talking about, it means that the people who have experienced oppression are now very visible as the people challenging that oppression and even better, doing it alongside their allies because of course not all professionals or even very many professionals are out there to make our lives horrible.
And how do we do our job? Part of it is meant to be as simple as the conversations we might have at lunch time with colleagues where we draw our personal experience and perspective into our work.
But much more of it, lies in meeting user and carer groups. I am lucky in that I often go to fairly organised groups and so can consult on specific things. At the moment I am just finishing a round of meetings on what we think we are the main issues people are facing in their area. This is part of a wider exercise we are doing in our department where we will work over the coming months in each health board area of Scotland to get a picture of life in that area. We will use that for our own intelligence but also work with local partners to use the reports of those meetings to try to create change alongside health boards and other people.
Hopefully these things will also help influence how we work and provide some interesting perspectives on our care and intelligence for practitioners on how services are working locally.
In the past I have consulted on the key rights issues people are facing in their lives. At other times I might be looking at issues to do with care planning or seclusion from a lived experience perspective which ultimately helps with our good practice guides. Having the luxury of being able to ask about subjects that seem interesting is also lovely and enlivens our meetings.
We meet everywhere from Mull to Skye, Arbroath to Dumfries and Aberdeen to Dundee with advocacy groups, support groups and self-help groups. During covid most meetings were by zoom but nowadays most are face to face again. When I meet a group I tend to introduce a topic by giving a reflection of some of my own experiences, then we have a conversation with the group to find out their experiences and views.
We have a growing collection of reports from our consultations which hopefully will end up on our website with other lived experience reports.
A few of the reports that we have produced from the user group meetings have been people’s views of sectioning and how much we can make decisions at such times. This has been an emotional and fascinating project and has resulted in me appearing in the Journal of Psychiatry and the Law, speaking at the Kings College Transnational 2018 Human rights and the law conference and at the United Nations Committee against Torture in Geneva and was also extremely influential in the thinking of the Scottish review of mental health legislation.
What else do we do? Well a lot is about building up relationships and networks; by meeting people in cafes to just share experiences and so on we are creating a network of people who can do more than just be consulted. Our connections have resulted in finding people willing to be filmed for our advance statement films and for the rights care pathway, or people who will comment on the speeches we give or reports we write, or people who will give examples of their experiences that can be used as case studies in different projects.
We are full members of the visit team on our visits to hospitals and on our themed visits and by being open about our own experience can sometimes develop a connection that would otherwise be hard to make. We are meant to do ten hospital visits a year and to be part of all the themed visits.
Prior to a themed visit, by the way a themed visit is an enquiry into a particular issue we think is important., we try to consult with the community that is being visited to find out from them just what it is they think we should be looking at, so for instance with the ‘ending the exclusion’ report I met with about 30 people with mental health and substance use issues to find out their priorities and issues before we even started and likewise with our prisons and mental health visit where I met about 28 people.
And lastly we do loads of public speaking at events such as this. It is both frightening and rewarding when we are speaking out, especially when we are using our own personal perspective to illustrate things.
Just to highlight some other aspects of the MWC
As I said we carry out hospital visits and themed visits – you can find reports of those on our website. We have an advice line for queries about care and treatment which is free to people with lived experience and their carers and is open through the working week. It is also free to health and care professionals who can call us for advice on the use of the law, for example, in care and treatment. It’s staffed by mental health nurses, social workers and psychiatrists and is open five days a week.
We also carry out investigations when some systemic error has led to what is usually a tragic outcome. We influence policy and practice. We monitor the use of the mental health and adults with incapacity acts and comment on their use. We monitor guardianship orders and gather data on how detention under the mental health act is being carried out which helps inform policy and practice. We have about seventy staff and around 18 practitioners who cover specific health board areas – they are a mixture of nurses, social workers and psychiatrists.
Meeting wonderful people in different parts of Scotland and being welcomed by them and then sitting down to talk of all sorts of different things and thinking that might make a difference is just perfect; knowing that we are helping the people who experience ill health have a voice both within the way the Commission works and in its actual work is a great feeling, and despite being away from the office so much still being welcomed when I come in on the rare occasions I visit it is also good, the symbolism of our engagement department is a two way thing – in the past it was easy for people like me to see professionals and policy makers as the enemy, but working in the field of mental health for so long and especially in the commission, it is a lovely feeling to realise we usually have common aims and values and can between us make a huge difference if we work together.