A personal vision of what mental health care might be
Joshi Project
Inverness 26 May 2022
Hello everyone – thank you for having me here to speak today.
I will be speaking for the next wee while about how I would personally like to see mental health services develop. My views are informed by the work with people with mental health problems that I do at the Mental Welfare Commission and also by my work in the past, especially in the Highlands with HUG action for mental health. Some of what I say is based on a consultation I carried out last year on the key rights issues we face which involved 115 people across Scotland. The views I give here are not necessarily the view of the Commission but they are based on some of the work I have done at it and may encourage discussion and debate about what would really work for us.
When I say I am going to talk about what mental health care might be and should be, I am going to start off with something a little controversial. For me the biggest things we need in our lives have little to do with the NHS and more to do with the society and people we live amongst.
I have a diagnosis of schizophrenia and have been compulsorily treated for it for the last 12 years. I am pretty certain that the jag I get every two weeks and the times I have with my CPN keep me alive; keep me functioning, however much I might doubt the wisdom of that.
But there is a huge amount in our lives that can be placed on top of just surviving. I am incredibly lucky compared to many of my friends and acquaintances. I have family, friends, I have an income and a bed to sleep in. I get barked at each day by wee James who likes to say he is part dog. I get cuddles and an “I love you” by wee Charlotte whenever she leaves the house to go to school or goes upstairs to her bed. And I get kisses and partnership and love and joy from my partner Wendy.
I know far too many people who are lonely and apart and isolated, who live alone, cannot heat the house, rarely get any luxuries or any break from the bleakness of being alone and poor and miserable. Although I think it is often our illness that can contribute to this. I don’t think everything is down to that and because of that I think much change is possible.
Despite having almost everything I could ever need I often feel apart and alien. I often feel that people do not ‘get me’, look on my quietness and lack of spontaneity with suspicion. I think lots of us are seen as odd and undesirable. This is even more the case if we are clearly different to whatever society sees as some sort of norm.
If we are homeless, or from an ethnic minority, or gay or have been in prison or have an addiction or are just visibly poor we can be rejected and made to feel different. Even those who are meant to care for and support us can see us as different.
And when people see us as ‘other’ they can decide what needs done for us, and they can doubt our intelligence or our right to make decisions or our ability to look after ourselves and they can look down on us. As we see how such people view us we can retreat and wonder why we would ever make the effort to participate or seek help from people who see us in such ways. We can withdraw from society and paradoxically the things that might have helped us, become things we distrust and find offensive.
So when I say what would a good mental health service look like? I would say it starts when we live in places where we feel we belong and are trusted and valued and connected. Maybe a bit of a hippy dream but it can happen.
After I moved away from the Highlands I felt very alone, I missed my community and my friends and did not meet new people easily. But for the last few years I have been going to Jeans Bothy which is a wellbeing hub in Helensburgh. It is there for anyone but it is mainly those of us who have poor mental health who go to it.
I took me months and months to feel comfortable there. It was one small but dramatic gesture that made all the difference. I was coming back from somewhere all stressed, with the children, just before Christmas and saw a parcel on the front door step. I had no idea why it was there but having opened it up and looked at all the chocolates and packets of coffee and biscuits, I saw it was a gift from Jeans Bothy. Someone had travelled for five miles to cheer up my families Christmas. I nearly burst into tears, so moved was I by that gesture of affection and support to me who had only ever hung awkwardly on the edge of the organisation.
Nowadays I walk happily into the building. I grin when I see people, I do the photography and the book club and the creative writing, I contribute to the newsletter and feel accepted. The mask I use to protect myself is not needed there. I can take it off and be myself and even dare to make jokes and giggle. If I am sad I can phone one of the workers. If I am struggling for food I can pick up one of their food deliveries. The acceptance that I get there is something I think we all need. Maybe not all of us need it in a place like Jeans Bothy and we may need medication and talking therapies but we also need to be with people we trust and in places where we feel we belong.
In my ideal world we would have wellbeing hubs in every village in Scotland, not just for those of us with a severe mental illness but for people who have had a row with their partner and need somewhere calm to escape to, or for a parent who cannot stand another moment in the middle of the night with their screaming kid and just wants an hour to close their eyes and drink a cup of tea.
We need safe places too. We can enter worlds where we are in danger from ourselves and maybe even present a risk to those we love even if only through the intensity of our distress. Whether these places should be like our current hospitals I don’t know. To me to many of those places are toxic and sterile and frightening but they don’t have to be. With the right design and the right resources and the right staff with the right attitudes, such places might become the sanctuary some of us pray for when we cannot cope for another minute on our own.
Hospital does not have to be a swear word and a mark of failure. It could be a light and positive place with things to do and comfortable places to sit and sleep in, people to talk to, places to be silent in and sometimes the protection some of us need when life has lost all its moorings and what we do or say no longer makes sense or keeps us safe in any way.
And of course such places should be places that respect us and our own knowledge, so that when we say we need sanctuary that is respected and when our loved ones say we need looked after, this is respected to.
Equally life and mental illness does not exist in a vacuum. We are part of families and communities and we need things we identify with. If we are young and just starting out in life then maybe we need facilities that respect this. If we come from a particular community, then maybe the help we get should respect the community we come from and maybe even be delivered by that community.
When I am in a terrible place I have lately realised that this can also put those that are close to me in an equally terrible place. It is terrifying when someone you love wants to die and you haven’t a clue about how to help. Our families and friends need the support and comfort they can take from knowing we will be looked after but also in knowing their own grieving at what they are going through will be respected and supported.
What else happens in our lives? Because a mental health service is about our whole lives not just illness and impairment! For those of us that can work we need to know we will be treated fairly at work, and that if we need time off we will get it and if we need support to continue to carry on working that will happen.
Many of us despite having many talents cannot work. That should not be looked down on, instead we need to look wider at what contribution means; we all have something to offer and we all achieve things daily. The ability of someone to get out of bed on a particularly bad day can be far more of an achievement compared to someone who daily juggles a high powered job with family and a rich social life but who does not know what it is like to lose energy and hope.
Mental illness services are also about mental wellbeing, they are about friendships and respect and connection, they are about learning and creativity and having an adequate income. They are about support when we cannot cope and the connection that can occur when we speak with people who have been through similar things to us and they are about helping us find the opportunities and possibilities everyone aspires to.
The Joshi Project bases much of its thinking on the Trieste Model - I don’t know if it would work in this country and have to say that I am very suspicious of people who claim they have found answers for us but I do like the idea of community hubs and places to feel safe in, places to be in each others company and to regain the skills and hope that life can rip away from us. The fact that their approach to us is respectful and means that forced treatment and hospitalisation has greatly reduced is also a lovely thing to hear.
Personally my life has been saved on a number of occasions when I have been compulsorily treated but despite that it is always an unpleasant and upsetting experience and anything that can done to minimise it while still keeping us safe seems like a good idea to me. Certainly in the Scottish Review of Mental Health Legislation we are keen to see if approaches like this could make the care we get in Scotland better for all of us.
I have been at pains to talk about the support we can get in our own communities and from each other. Speaking personally that is where I feel safest but I do like the idea of a society where looking after mental well being and health becomes a given. Where whoever you are and whatever your background and wherever you live there are ways of helping us when we are sad or miserable or plain old ill. We will always need the conventional talking treatments and the doctors and nurses and so on; we need the medication or at least some of us do but I like the idea of connection and belonging so that if you are lonely, fed up with the world or just want to do something positive there is somewhere in every community to promote that possibility.
I will finish with a very old experience – the last time I was in New Craigs, which was a very long time ago, I was grumbling about it –I was saying how I hated the boredom, the lino, the still air, that depressing clinical feel and a small group of us got talking and laughing and said
“Imagine if we could create an alternate to New Craigs that we could go to when we are utterly fed up with being on the ward!”
As we talked it took shape – a sprawling welcoming homely building, with animals and a garden. We could just go to chill or we could make lunch from the vegetables we had grown there. We might wander off for reiki or a massage, or we might go into another room and paint pictures or do something else creative. There would be lovely comfy private spaces to sit and muse or natter. There would be benches with roses and bushes to while the hours away, while looking down on the town.
It would be run by patients with support from staff and between us we would provide employment for people with mental health problems. We would decide amongst ourselves what we wanted to do that week or that day but if we couldn’t be bothered we might lounge in a comfy chair until we had the energy to do something else.
We would not have goals or targets or aims. We would not be on some mission to regain the skills to cope in the community or to declare ourselves recovered or to get back into employment or to take responsibility for our illness and wellbeing; that might or might not happen. For some of us that would be our ideal but for others we might say to ourselves.
“This is a good life. It keeps me more or less well. I have company and food and things to do. I don’t need much more than that.”
The more I think about it the more I would like somewhere like that whether I had a mental illness or not. I hate the pressure we put on ourselves to succeed and be perfect and love the idea of the gentleness of looking after each other and the bit of the world we happen to be in.
As you can see a very personal vision and possibly a very unrealistic one but I know some people share it to some extent. I hope this will help stimulate some discussion about what we might ultimately end up creating in Highland.
Thank you so much to Mark and Joanna for including me in your conversations and conference.
Thank you.
(Photo: Poppies Nairn, May 2022)
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