Talk to Peer support workers Glasgow
10 May 2021
My life, My work, the Mental Welfare Commission
Hello everyone
I have been asked to talk about some of my lived experience and my work to date which is a very wide remit indeed, apparently I gave a good talk some time ago which one of you heard and liked and now I have to live up to it which is both exciting and a bit alarming.
First of all I gather you are all peer support workers, I will confess to ignorance – I have written about peer support, consulted on it, but I have never done it, I don’t know much about the principles and values you bring to it so, if I step over some unwritten mark, my apologies – do challenge or educate me later if you wish.
I first got involved in mental health activism and speaking out thirty eight years ago. I had been discharged from one of the old asylums after a suicide attempt and though I didn’t know it, got involved in peer support almost immediately, although we didn’t call it that at the time.
First of all I had made a sort of friend in hospital; he will be long dead now; he had learning disabilities, alcohol problems and mental health problems. I was lonely and insecure and so was he, he was also determined that I help him drink away the inheritance I had received just before being admitted to hospital. He was often homeless, often in trouble with the law, we would go to the pub together and play pool together, I would try to help him budget a little so that he didn’t blow his entire dole payment the first day he got it, try to get him to go to the shops for food before he went to the pub. I would sit in the parole office with him and call the ambulance when he would have fits after drinking too much and taking too many tablets. In our different ways we kept each other going.
At the same time I had started volunteering for something we called a Half Way House. It didn’t take long for us volunteers to realise nearly all of us had mental health problems and were not that different to the young people we tried to care for in the Half Way House.
We created our own tiny revolution and combined residents and volunteers into a group of people who were going to create a user run crisis centre run by and for young people with mental health problems from which all professionals would be barred. The feeling of enthusiasm, connection and camaraderie as we tried to get funding and braved council meetings to pitch our ideas, wrote brochures and funding applications was incredible. A wonderful and vibrant couple of years. We never did get a crisis centre, or disabled access, or lots of things but we did get one of the first ever comic relief grants and McMurphys the drop in centre run by young people for young people opened its doors just as I left Sheffield to start a life in Scotland with my girlfriend who later became my wife.
My working life since then has been about gaining a voice for me and my friends and colleagues and peers but at the time back in Sheffield, when groups like Survivors Speak out approached us, we were not interested. We thought, we don’t need a voice, we don’t want better services provided by other people, we want our own ones run by ourselves and we will set off to create them which we did. I now have slightly different ideas but I will never forget the wonder of being at ease with each other, of sharing our time and our food and our dreams with each other and how that gave me back the life that a few months before had seemed unliveable.
I am fifty eight now. With a few gaps my entire adult life has been about making a difference for people like me with mental health problems.
I was the first worker for CAPS over in Edinburgh about thirty years ago, I set up HUG (action for mental health) in the Highlands and alongside it People first Highland that spoke out on the issues of people with learning disabilities. It was lovely. Now I work with the Mental Welfare Commission.
Along the way my diagnosis changed from Borderline Personality Disorder to Schizophrenia to paranoid schizophrenia with bits of alcohol abuse, depression and anxiety. I am used to be being in hospital on a section, I know very well the planning that needs to go on when you are on constant observations and there are certain nurses who are with you all the time who you don’t want to go the toilet in front of and others who make it less of a humiliation and I know what it is like to be running down hospital corridors with alarms blaring and nurses pouring out of the wards to stop you getting out of the hospital building and I know what it is like to have the light on in your bedroom 24 hours a day for weeks and weeks until all you crave is a chance to sit alone in the dark, or the chance to leave the stale air of the ward and walk on grass in the fresh air and to touch the trees.
But I also know what it is like, some months after being discharged, to realise that the constant obs stopped me from dying, and minimised the number of times I harmed myself.
I am now on a compulsory community treatment order and have been for the last decade. I don’t know if it is this that has kept me out of hospital in all this time or if it is my partner Wendy, her children, Dash the dog and the rabbits or if it is that I am now away from a relationship where I was used to being hit and spat at and called schizo or psycho. I think it is probably a mixture of all of those.
I want to talk about some of the things I have really enjoyed doing in the world of mental health and advocacy. I will start off boasting and then settle down to what I know are the really important bits.
The very best times were, when in the Highlands, we commissioned performances and workshops about mental ill health and over about ten years took them around the Highland Schools; four different plays and so many performances! Although I was the manager I was not the organiser of these plays, I was more like a mascot who travelled with the actors. We must have performed with and involved about 10000 young people over the years. It was wonderful, and moving and the young people so incredibly receptive to our message. I still occasionally come across someone who now works in mental health who says our work in schools was their inspiration for doing so.
We did so many things; consulting on the issues our members thought were important, writing reports on the consultations and seeing services established as a result or seeing them influencing regional or national policy. Training hundreds and hundreds of mental health professionals over the years; speaking at national, international and local conferences; creating films and animations; having art exhibitions and poetry readings; finding ourselves in Romania, Catalunya. Portugal, Poland talking about what we were doing; appearing on telly and in the media, campaigning to stop services being closed.
Every moment was wonderful but as you will know of much more importance was the fact that many of our members regarded what we did as being about creating connection and belonging and ownership; that despite speaking in Parliament some of the best bits were when we ate together, washed the dishes; when we sat in the office garden we had created and the smokers smoked and we talked in the sunshine, or settling down at the end of one of our nature walks for tea and flapjacks.
I loved those times and was delighted to be awarded an MBE for it but very embarrassed.
I moved down to Cardross five and half years ago, not because of career but because I was in love and wanted to live with Wendy and her family.
The last five years have been a roller coaster of a time; I tend to talk of my experience of schizophrenia as some people refer to it, as a separate part of my life but am slowly learning that everything is connected and everything influences everything else.
A fifty three year old arriving into a new family with four year old twins, missing a grown up son he hadn’t seen for many years with a father who was dying of Parkinson’s, a sort of father in law who was dying of prostate cancer and the need to prove as usual that he was good at what he was doing at work is not a good combination.
But despite that I had a wonderful family: I had a partner who respected me and did not decide what I could and could not do or say. I had amazing children around me and later an amazing labradoodle who sleeps on my bed every night and then some slightly alarming fratricidal rabbits who sleep in Charlotte’s room. I had an amazing boss and an amazing co worker and wonderful colleagues and I had a job that took me across Scotland meeting wonderful people like you. I also had the pleasure of having my memoir START published and learning to deliver author events in bookshops and library’s.
It was only when lockdown really started and Wendy’s dad died and then my dad too and when my need to work blossomed just that too much and my voluntary work began to outgrow my paid work and when finally, I was getting just that bit too much harassment as joint vice chair of the Scott Review of our mental health legislation that I collapsed a little.
That was at the end of last year. I had three months off sick and for the first time agreed to and took some responsibility for my mental health. In the past I would have worked and cracked up slowly until I was carted off to hospital – this time I stopped working at my bosses, Wendy’s and my CPN’s advice, slept, walked, wrote , read and did lots of walking. I really, really, hope I can manage to continue on this theme of learning to look after myself and by so doing looking after those I love. It might mean that some impossible day I agree to take my medication and can be free of my CTO and maybe even free from my fortnightly jag.
But the last five years of work have been wonderful too, walking by the sea, trips to Milan and Disneyland, stays in a caravan at Crail, watching telly cuddled up, visiting the charity shops, having a drink on a bench in the evening and some lovely times at work so now a brief glimpse of my current work before I stop.
I am an engagement and participation officer using my lived experience to inform it at the Mental Welfare Commission , my colleague Kathleen is the same but using her experience as a carer.
We meet up with lived experience groups all the time, peer groups, support groups, advocacy groups and there we hear about issues affecting people in their own area which we pass on to practitioners in the Commission, we chatter and we natter and we discuss topics that are turned into reports that go on to influence what we do at the Commission and maybe to influence policy.
Before I get into too much detail: the Commission ultimately answers to parliament and is there to uphold and promote the rights of people with a mental illness, personality disorder, dementia, autism and learning disability. It has 46 staff and covers Scotland.
We visit every psychiatric ward about once a year, Kathleen and I are meant to go on ten of these visits a year, mainly to meet patients and carers, at the moment we are just getting used to using ‘near me’ to speak with patients about how they are finding their stay and if it can be improved.
The Commission also carries out themed visits, where we find out people’s views and experiences on particular topics or from particular communities – these visits are often aimed at less heard groups – last year we were looking at people with eating disorders and finding out their views and the year before those with a diagnosis of EUPD. This year we are looking at the experience of those from diverse ethnic communities, people with a mental illness in prison and people with both addiction and mental health issues. Kathleen and me are a full parts of these visits and often do the first stage of the work where we find out from people with lived experience what is important to them and use that to guide the rest of our work.
We also play our part in promoting good practice, so for instance, today I was giving a personal perspective on advance statements around our guide to them at a webinar with 190 practitioners present. And in the past we have found out people’s views and opinions on everything from care plans to seclusion, which go on to inform our publications and opinions.
The Commission has a free advice line about care and treatment for people with lived experience, to my relief, I don’t staff that. It also carries out a small number of investigations when things go dramatically wrong and produces reports and recommendations on the subject – I am not really involved in that either.
I am involved in our work around policy and in our work around the legislation that applies to us. I must have met about 800 people talking about our views and experiences of detention which has led to reports on our website and to speeches at the United Nations Committee against Torture or the Kings College Transnational summit on the law and human rights and is also probably partly why I have now reduced my hours in order to spend more time on the Scott review of mental health legislation.
I will be honest: when I give a talk and it goes well I am delighted. If I am commissioned to write an article for a mental health journal or magazine or am interviewed by a newspaper my head gets far too big for comfort. I love the feeling of being able to make a difference and contribute and feel I have value and I love people telling me that I am good at what I do.
But I know in my heart that the best bits are when I am in a room with people with lived experience and we are laughing and talking and changing the world. Maybe that is constrained by covid just now but last night I was talking with people from Shetland, Orkney and Mull – what could be better, the ebb and flow of shared experience and ideas and stories.
And for me, who once used to work 70 hour weeks, what could be better than having a job when I am home with the children before and after school and can take the dog for a walk by the sea every day in between zoom calls, teams calls, report and speech writing and knowing that despite the urge to create change that the greatest gifts sometimes come from sharing a coffee together or sitting on a bench by a river to pass the time with each other.
If, after hearing this, you want me to come back again for less conversation about me and much more about your opinions on life the world and everything do let me know – I can add this group to my mailing list so that if ever you get an email and say that is so important, we must talk about it– then you can know I will be along to find out from you why it is and what we can do about it. And for me that would be wonderful.
Thank you.
For more information on the Mental Welfare Commission visit : https://www.mwcscot.org.uk/
(Photo; Me, for no particular reason. Ardmore 05 21)
Comments