Life, schizophrenia; the Scott Review

Life, schizophrenia; the Scott Review

Young people’s bipolar Scotland group

Wednesday 11 august 2021 7pm

Zoom meeting

Hello

I am excited to be allowed to come and talk with you but I am also nervous and I don’t know why. Maybe because I am doing some work that I hope will benefit our communities but often find myself uncertain about it and am worried that you will not approve.

I am going to talk for only a short time as I have already heard that you all have ideas and experiences that you would like to pass onto us at the Scott Review where we are reviewing all the current mental health legislation and I want to have space to get all your comments down or rather to let Kirsty from the Secretariat to do so.

However I will talk about me as I also hear that you want to hear some of my story and I will talk for a short time about where our thinking is in the Scott Review. Then, hopefully, we can talk to our hearts content, or at least until the time allowed is up!

The first thing I will do is lecture you which I always try to not to do so I don’t know why I intend to today! I imagine it is because you are young and for some weird reason, I think I might have something to say which might help. The very fact that I start off preaching may give you some thoughts about how young people should be treated when we speak later – do tell me off if what I say reflects a generally patronising approach to young people.

So my lecture. For twenty years I worked with HUG (action for mental health) which acts as a voice for people with a mental illness in the Highlands. We spent a lot of our time in HUG going into schools to help young people learn that people like me with a diagnosis of schizophrenia, were pretty much like anyone else in some ways and that mental illness merited the same attention as any other condition.

In the last five years or so that I was there we did more and more to get young people involved in changing the world from their perspective and they did a brilliant job when they created an organisation called SPEAK this is me.

But I was really struck by the comments some of them made privately when they met us older people in our own groups. We were very used to each other but some of us had our mannerisms and our ways of dressing that did sometimes smack of the stereotype of mental illness you see in films. Most of us were single and most of us unemployed and had been for some time and nearly all of us had experience of mental illness that had lasted for decades. Some of the young people spoke privately to some of us workers and said that that was hugely depressing for them. They did not want a constant reminder that this too might be their future life.

I felt for them and remembered many years ago when I was in my twenties and we had set up an organisation called Awareness in Edinburgh which we fondly hoped would make the world a better place for people like us. We were young and enthusiastic and one of the members was lovely; he was just out of University but couldn’t get a job because he was so often ill. In the end he killed himself as the thought of years of poverty, suffering and unemployment was too much to bear.

That had a profound effect on me and I hope is not too negative a thing for you to listen to because I hope the rest of this talk is more positive and I hope would lead to the idea that life does not have to end that way.

I am not a typical example of someone with schizophrenia but maybe elements of what I have been through may spark some small elements of hope in any of you who have wondered about the future with mental illness.

I am very definitely not a success story and I have not recovered and I have not been ‘cured’. I am so far from being ‘cured’ that is still don’t accept that I really have schizophrenia. I get a jag every two weeks. I have been on a compulsory treatment order for the last eleven years. I have to see my CPN. I have to have my jag. I have to see my psychiatrist and if I don’t there will be consequences and sometimes, because of this, I feel like just leaving; packing a bag and wondering off, with my tent to see what happens; far, far, from mental illness and mental health professionals. Every two years I go to a tribunal where they decide whether to renew my CTO and each time it feels humiliating and each time I am not too sure what I want the result to be.

I can no longer imagine a life without mental illness figuring in it but then, eleven years ago, after I left my wife, I couldn’t really imagine life at all. Especially when my son decided he no longer wanted to speak to me either.

But this weekend was wonderful; perhaps one of the best in my life. Not for any spectacular reason. It was just lovely. I woke on Saturday to a sunny day but not too hot and wandered off, after breakfast to Jeans bothy; a drop in centre where I sat in the garden and we planned an exhibition of our photos. I was in a really good mood because the day before I had run a successful writing workshop for the mental health and arts festival and had also got a long way forward on a report for my work for the mental welfare commission on what life is like in prison if you have a mental illness.

As we sat looking at our photos we giggled and laughed and made fun of each other; J had made a whole batch of cakes, K brought us coffee. We all left in a very good mood.

I came home to cuddle up to my partner Wendy and spend at least two hours lying in bed with the windows slightly open talking and laughing about I do not know what.

We ended up on a lovely walk in the hills looking towards Loch Lomond with Dash the dog; came back to strim the lawn and drink cold beer and plant plants. The evening we watched films cuddled up until the twins arrived back home after having a holiday in Lanzarotte with their dad. The next day was much the same but I also got a chance to work on my next book and to plan the blog for my website for the next day.

I do spend a lot of my life in a strange world where feeling and joy are absent, where my partner prizes words from me as though I have locked myself away from all human contact. I drink far too much. My delusion, if that is what we want to call it, is that I am bringing about the end of the world, each bit of news about climate change, or war or the decent into hatred so many people have confirms this to me. I get extremely anxious and paranoid and will always be convinced someone hates me or hates what I do or thinks I am useless at my job. But I also have the most amazing life.

I am very far from rich, but I have a wonderful family who I adore and flourish with. I have friends which I had thought I never would do because I can be so socially awkward. Dash the dog cuddles up to me every night. I have work which I am fairly sure makes a difference to my community and I have often been praised for the work I do.

When I worked with HUG we did so much: we educated professionals; we went into schools with plays and must have reached about 10000 young people. We held art exhibitions and gave spoken word performances. We created films; spoke at conferences and in parliament. We appeared in the press and on telly and flourished as a community. People who would never speak in public contributed, as well as people who were comfortable flitting around Europe speaking at conferences. It was a lovely time; a time of belonging and community and the excitement of knowing we all have value however we might appear to the outside world or even to ourselves.

I have been with the Mental Welfare Commission for the last five years, wandering around Scotland, meeting people like you, just as I am doing to today; learning from you and hopefully using your opinion and experience to make a difference.

The Commission exists to promote and protect the rights of people with a mental illness, personality disorder, autism, dementia, learning disabilities and so on. We visit hospital wards, carry out projects on particular subjects such as homelessness or the experience of people with eating disorders. We have an advice line, influence policy and monitor the Mental Health Act. We do loads and I find it wonderful

– I have done spectacular things like speak to the United Nations Committee Against Torture or the Transnational Summit of Law and Human Rights but the things I love most are talking about everything under the sun in a yurt in a community garden in Oban, or speaking about advance statements in Arbroath or on advocacy in Lossiemouth and now, of course, doing the same via zoom with you and others.

For the last year I have also been joint vice chair of the Scott review where we are reviewing all the legislation that applies to us. We have just released our third interim report about where our thinking is to date and where the various advisory groups and reference groups we have set up, have got to in their thinking.

Put very, very, bluntly we are looking to recommend that legislation changes dramatically. The legislation that applies to us just now is almost entirely about those times when people come in and make decisions for us because we are no longer seen as having the ability to make them and also as a consequence pose a risk to ourselves of other people.

In other words it is about when we are sectioned or it’s mainly about that. We still think there will be times when a person needs to be treated against their will: when you think you are being spied on from the wing mirrors of every car and watched from every roof top by M15 and decide that you need to take drastic action to stop this then we think we can need sectioned. When life is so dark and sullen that we cannot make the decisions to get out of bed; cannot summon the energy to eat or drink and do not think we deserve any help and instead should die then we also think that we might need sectioned; it can or should save life and prevent terrible harm.

But at the same time I know of the trauma of running down hospital corridors pursued by nurses with the alarm blaring in my ears and know that this should be a matter of last resort.

So we are looking at the evidence that exists to make sectioning less common and less traumatic of which there is some across the world. Maybe this will make coercion and compulsion less traumatic and less frequent in the future.

Maybe intervention will not have to be purely on the basis of ‘mental disorder’ as it is called but on the whether anyone whoever they are lacks the capacity or ability to make decisions whether they have a mental disorder or not.

But much more than that is our desire to have legislation that recognises our cultural and social and economic rights which theoretically might mean that we have the services in existence that mean we do not get to those terrible times in our lives when the only thing left to do is to section us. So that we have help in crisis; we have early intervention; we have the preventative and supportive services that help us keep managing and coping in our daily lives that so often do not exist at present.

And lastly connected to that are all the things you will be familiar with – the difficulty of managing on benefits, the difficulty of staying in employment, the shame of stigma and discrimination, the isolation and loneliness we experience, our interrupted education; our lack of access to everyday activities, our life sometimes on the margins – we want legislation to move to cover these sorts of things too – so that we have legal rights that do far more than protect us when we are sectioned but which also protect us when society struggles to accept us and allows us to expect more than a bare minimum.

I do apologise for my lecture at the start. I am not sure when I first struggled with my mental health. I think looking back it would be in my early childhood but it wasn’t until my early twenties that it was recognised I had long term problems. If I had heard those bald words; that at 58 I would still be on a section and likely to be on one for the foreseeable future I might have despaired

– but if I could reach back in time and tell myself of the wonderful times I have now and have had for so much of my life: the dawns in the mid atlantic, the times camping in the desert, the long nights of cuddles and conversation, the birth of my son, the silliness, the shared meals, the joy of finding love again late in my life, the wonder of Dash the dog, the rabbits, the fact that I often look forward to what I am doing the next day.

I would not say to you please look forward to life because for some of you that would be too much to presume but I would say that for me and many of the people I know in my life who other people dismiss and look on as failures, that life can be so rich even when we have the most awful illnesses or whatever we want to call them. And rich not in the way of conventional achievement. I do preen that I have an MBE, that I have won some awards and written a book and things like that but Wendy has taught me that there is so much more to life than that.

I am learning that a much better approach to life is getting up early when it is cool, to give Dash the dog a walk in the morning before it gets too hot. Phoning a dear friend even though our calls last for so much longer than I would like. Making Wendy a cup of coffee in the morning. Taking time off work this Thursday so the children can have some fun in the last few days of their holidays. Phoning my mum each evening; these small things make all the difference to my life nowadays and I see it in my friends too, making coffee or tea for an acquaintance, looking after the pets, writing a poem or posting on facebook, cherishing each other; being tender even when those around us are in the most terrible state and, of course, accepting help and tenderness when we too are in a terrible place.

These things are so important, to me much more important than jobs and status and recognition.

Now hopefully we will have a conversation – I think some of you know me already – I am happy to talk about absolutely anything (almost) to do with my life and work but do grab this opportunity to let us at the MWC and at the Scott Review know what the issues are for young people and what legislation should be doing for you!!

If we go silent I have been sent a whole list of questions to ask you which I will drag out and go through one by one…

Thank you so much for listening and being here today.

(Photo. Jeans Bothy Helensburgh August 2021)