CATCH 23/WIAMH AGM
The Bridge. Stornoway.
13 MARCH 2024
THE VALUE OF YOUR EXPERIENCES AND THE NEED TO BE HEARD.
GRAHAM MORGAN
MENTAL WELFARE COMMISSION
Hello everyone.
It is wonderful to be back here with you again. I am sorry it has taken me a year to manage it but I am really looking forward to spending the next couple of days with you.
When I was invited to speak with you last year it was in order to find out what life is like on these islands and to hopefully see change occur as a result of what you said to me.
Many of you did speak and I was so awed by your willingness to share both the positive and the sometimes deeply traumatic aspects of your experience. At the same time, it was wonderful to witness activities at Catch 23 and to gain some sort of perspective of what you do here.
My task today is to talk about the value of what you told us and to summarise the main issues that went into our report and later spend a short time discussing how you would like to see the issues you have raised dealt with and how you would like respect given to the gift you give people like me, by giving us your thoughts; opinions and experiences.
First, just to remind you who I am and where I come from. My name is Graham Morgan, I work for the Mental Welfare Commission as an engagement worker. I have a diagnosis of schizophrenia and have spent most of my adult life speaking alongside people to make sure that what we go through is witnessed and recorded and hopefully, acted on.
The Mental Welfare Commission is all about the rights of people with a mental illness, learning disability, autism, dementia and related conditions. We do loads and cover the whole of Scotland. Being part time and having to reach the whole country may explain why I have not been able to come back to you as frequently as I would have liked to.
We visit hospital wards where we speak with patients and family members and staff. We look at particular issues we find some communities are experiencing, such as being on a compulsory treatment order or being in prison with a mental illness or having a substance misuse issue and mental illness; those sorts of things. We look at the legislation that applies to us and we look at policy and good practice. We examine the circumstances that have happened when people have died while detained and we investigate a small number of cases in great deal each year; where we are worried that something has gone terribly wrong due to something wrong with the system. We visit people who are under guardianship and we have a free advice line that you can phone you have worries about your care and treatment and in some cases we do further work here.
I meet people across the country in hospitals, community centres, cafes and so on and for me that is the very best bit of my job.
After I visited you last year to get a flavour of issues you experienced on your islands, I went back with the report you had helped me create. My bosses found this so helpful and it has now been agreed that from now on, as engagement workers we will do a similar exercise within each health board area. Over the coming years we will work with local partners like Catch 23 or Penumbra to meet with many people like yourselves across Scotland. From the information we receive through from you, we will create reports and will work with local people and health boards to hopefully inform them of the reality of life for some people and hopefully to help improve the services you get.
I will talk about what you told me last year in a moment but would like to concentrate on the power of the sharing of our stories. It is now over forty years ago since I spoke out for the first time about my life. I remember it clearly. I was sitting in a smoky meeting room in Sheffield at an organisation called Half way house and all around me were volunteers and residents of the house. I talked of my experience in one of the old asylums and of my treatment in the community. I hadn’t known what to expect but was terribly, terribly, nervous. When I finished I was exhausted and close to tears and, to my surprise so were many of my colleagues. The talk opened the door for us to talk in a way we hadn’t before. We talked and we cried and we hugged and then we ended up laughing and smiling and out of that we got together and set up ‘McMurphies’ which was one of the first drop in centres in the UK created, developed and run by young people with a mental illness.
It was such a wonderful time, sharing, speaking and dreaming of something better and much to our surprise creating it. The power of speaking out is sometimes in itself healing and sometimes when we are truly heard it makes a massive difference to our lives.
One of the key things you both told and demonstrated to me last year was the value of Catch 23: the support you give to each other, your lovely building, the activities you get up to, the garden, the meals, the events you put on. Coming to you reminded me of Jeans Bothy in Helensburgh, which attend when I can manage. At Jeans Bothy we do many similar things to you, some of us have very disabling conditions, others attend the Bothy because of loneliness or simply because they want something to do or just because we enjoy ourselves there. There is no hierarchy of who should go there or who deserves what. In fact the huge variety of people who go there is one of the things that make it so wonderful. We rarely talk about illness and things like that; instead we may be going to the writing or art group, or doing the crafts or woodland crafts. Maybe getting a book from the book-club or eating a meal together, sometimes picking up free food donated by the supermarkets or going to cinema or fitness sessions dedicated to us, or perhaps doing the yoga, talking to a worker or playing computer games in the evening. I love it, it makes me feel safe. It is a place where I feel connection and belonging and so I think I can understand why you told us Catch 23 is so valuable to you too.
Since coming to see you and finding out about Catch 23 and the Western Isles, We have been concentrating on finding out about the issues other people face but this time in Argyll, and hearing a similar reaction to the one you have had about places like this. I hear amazing feedback about the Link Clubs or Hope kitchen or Meeting Point or the Carers centres just as I do when I go to other health board areas. It is interesting to hear the common threads of different communities and health boards. Which reminds me to tell you more of the key things you told me last time I was with you.
Access to services was difficult, especially the community psychiatric nursing service which seem to be under so much pressure that some people who needed help from it could not get it, although some people who did get a service were very positive about it.
You told me stigma is still an issue on the islands though whether it is greater or lesser than on the mainland you didn’t know. Speaking personally, I know stigma is still an issue, especially for some conditions but I think it varies; in communities where everyone is known the reaction of those around us can be very different to those times when we do not even know who our neighbours are. I am aware that some people have been subject to harassment that, to them, seemed like hate crime and that they believed that the police seemed unable to prevent this.
You talked of the difficulty of getting services off of the islands, especially in an emergency, and talked about how isolated people could be when in hospital away from family on the mainland.
I heard about the reliance on locums with a feeling that this was not good for patient care. This was born out by a recent freedom of information request one of my contacts made recently where we heard that providing locum cover for your two psychiatrists is costing the health board nearly a million pounds a year.
However, I also heard that here is a welcoming environment and in my short visit I certainly witnessed this; that communities are on the whole, very supportive compared to some other places.
There is the difficulty of getting referred to services and in getting support as well as the fact that services tend to be Stornoway centric so that people out with Stornoway can feel less of a sense of support and community than others.
A small number of you said that you had negative experiences in the acute psychiatric unit with sometimes dismissive staff and a lack of activity and contact.
We heard how hard it was for some of you to get help in crisis, saying that you were sometimes discouraged by statutory services from contacting the police, A&E, ambulance and mental health services when desperate. Some friends and family said that they felt at a loss as to what to do when they were seeking help and support for loved ones who had become so distressed, they were no longer able to support them.
There was a whole host of other things such as feeling medication wasn’t reviewed enough and that difficult conversations about medication when the medication dealing with your mental health was producing potentially life-threatening side effects did not happen. Other issues were raised about: suicide, support for young people, support for people bereaved by suicide, peer support, awareness of mental illness by front line services, support for carers and the need for all services to work together co-operatively
You wanted to see an approach that looked at all aspects of your lives as well as providing the mental health care some of you sometimes had a great need for. Some of the things you said were very basic but very important – the need to work together and to speak together and communicate – such things can make such a difference when life is very difficult – either as someone with lived experience, or as a family member, as a worker or some combination of all of that.
To me these messages that you shared are hugely important. I will take a moment to share what I am hearing in other parts of the country. Increasingly I worry that we are getting into more and more of a crisis with the services we get. It is harder and harder to recruit staff and when they are working they are under so much pressure it is harder to keep them in post. If we have too few staff we have too little support and people like you suffer. In the third sector we often hear of wonderful work but we hear that funding is always very delicate; there is always so much that could be done that there is not the time and resources to do.
It is I admit, a gloomy picture. As I said I will be here a couple of days. If any of you want to speak with me one to one after this then do let me or Rebecca know. When I leave it will be some months before I come back- if any of you want to go on my mailing lists to hear from me or join in our regular monthly zoom calls that cover the country do let me know or give your email address to Rebecca.
Despite it being a gloomy picture I would love to go back to the value of speaking out. We now have a document that paints some sort of picture of life here in 2023. It stands as testimony and bears witness to your experiences. If you hadn’t said these things then it is likely that people would not have known about them. Just having that record is important in itself, it becomes part of a history and if we are lucky, like that time I mentioned back in Sheffield, it may lead to change and improvement. There is a dignity in speaking the truth as we see it and there is a hope that hearing this truth will lead to conversations that lead to something better. I truly believe that when we can talk amongst ourselves and learn from each other, when services providers can hear things about how good Catch 23 can be but also how difficult it is when we are absolutely desperate and there is no one to turn to and maybe if those that run and provide services have the chance to be honest and talk about trying to provide help when more and more people suffer and funds are in shorter and shorter supply and when even though they have the funds, they cannot actually get people to come and live here to do the work that is needed. Then maybe we can understand each other better and maybe with that understanding we can work together to make a difference.
If any of you want the full report of my last visit emailed to you do give your email address to Rebecca so she can forward it to me.
We have sent the report to officials in the Western Isles and it is now sits in their hands to action issues raised. The practitioner within the Commission who covers this area, will, along with others, be attending what we call ‘the end of year meeting’ which is to be held in April. At this meeting they will raise and discuss what is being done with the information received from people such as yourselves last year.
After lunch I would love it if you could spend just a short time in your groups discussing the following.
· First of all I would love you to tell me why you think Lived and carer experience is important – sometimes people do not understand its importance and rather than me trying to tell them I would love to use your words.
· Now we have finally written this report – where would you like it to go and who would you like to read it and see it.
· And finally what do you want to see happen with it? I believe that a report like this is the start of something not the end. What would you like us to do in the Commission? What would you like officials and policy makers do? What would you want to do yourselves or see done by organisations like Catch 23 or Penumbra do or the carers centre or advocacy?
Thank you so, so, much for listening. You will be wanting your lunch. It would be lovely to natter with any of you who want to just now or later on.
Photos - Catch 23 Stornoway March 24