Involving people with lived experience of mental ill health in discussions and research around mental health legislation: barriers and solutions

NHS Research Scotland Mental Health Annual Scientific Meeting

‘Balancing viewpoints: Rights, Data and Empowerment’

Involving people with lived experience of mental ill health in discussions and research around mental health legislation: barriers and solutions

Graham will give a perspective based on his work at the MWC as an engagement officer; his personal life and his past work with SMHLR and HUG action for mental health about the need to involve people with lived experience in debate and research into mental health legislation, the barriers, positives and necessities we should all be aware of.

Hello everyone.

It is very good to be here.

A very brief introduction – I am an engagement and participation officer (lived experience) at the Mental Welfare Commission.

I imagine that most of you know that this organisation is all about the rights of people with a mental illness, learning disability, autism, dementia and related conditions and my job title is of course obvious – my particular role is to involve people with a mental illness in helping the Commission hear about their lives and in how they think it should respond to their views and experiences.

The themes I am speaking on today stem from the position I held some time ago as  joint vice chair of the Scottish mental health legislation review and the chair of our coercive practice workstream. To summarise a thousand page document in a sentence is ridiculous but within the coercive treatment chapter we felt that if we felt a part of society and valued and included and if we got the services we wanted and needed and if we actually could have better lives by accessing the cultural economic and social rights we currently don’t tend to get but should do, then the use of coercion may reduce. Really simple! But there was so so much more to that review than my particular workstream. However much of what I refer to later is connected to the review.

In everyday life, I wander the the country meeting people everywhere from Forensic Secure wards to Wellbeing Hubs and cafes. Being able to meet fellow members of my community as part of my work is wonderful. I have a number of colleagues who do much the same but with carers and neurodiverse communities.

Some of you will have read in my biography that I have an MBE for services to mental health and other awards. Most of my working life has been about giving voice to people like me to make the world a better place for us but even people like me can get disillusioned and wonder at the point of it.

The thing that really made me take a step backwards was the recent Calocott case in Nottingham. When bereaved family members, maybe understandably, made comments that Calocott’s parents should have been ashamed to have given birth to him and been even more ashamed to bring him into this country and the TV presenters nodded comfortingly and made no effort at all to challenge their view that he wasn’t ill but instead was evil and exceptionally irresponsible for refusing medication and not wanting to engage with the people treating him. It made me feel very sad.

I did a double take; felt a sick hollow of anxiety in my stomach and realised that the comfortable non-judgemental community I live amongst does not represent most of society.

I too have a diagnosis of paranoid schizophrenia, if I could, I would not take my medication and really would prefer not to have to see my mental health team as I am required to under the terms of my compulsory community treatment order.

Not to be able to listen to the telly or read the news without hearing that people like me are monsters was horrible. It made me feel truly vulnerable in my community for the first time. It also made me want to disengage even more from mental health services – I still don’t really believe I have schizophrenia and if people like me are as awful as we are said to be, then why even speak to those who claim they want to help us?

In my work I meet so many groups of people who say they want to speak out and make the world a better place but many of them have been doing this for decades and decades.

In fact I was doing this speaking out job before some of the people I used to manage in collective advocacy were born and the really sad thing is, not only have we not got what we were seeking twenty, thirty or forty  years ago; life in the world of mental health seems to be getting worse and worse with more and more ambitious ideas to change legislation and practice and less and less possibility of this reflecting our daily reality.

This means some people have stopped being cooperative and pleasant and instead more inclined to say to researchers: “Dig out any piece of research over the last few decades and you will find much the same thing we said then, there is no need to ask us all over again.” and also inclined to say “Stop coming to ask the same questions when the prospect of change is pretty much zero at the outset.”

However despite that I do meet people who still want to speak about the issues we face. In my work I think it is because often I talk about things that people have said they want to talk about. I regularly ask people what their priorities are for discussion and they often bear no relation to the priorities agencies have for consultation.

The priorities that people with lived experience of mental illness created for me last year were, first of all getting support on discharge from hospital, then that, often repeated, but I imagine under researched topic, of the relationships people like me have with the professionals that are there to help us; then having activities to do both in the community and in hospital. Other priorities they talked about was the support our family and friends offer us and the relationship we with have with policy makers. That last priority may sound a strange subject for research but I have long thought the status and involvement of people like me in the development of policy and law could do with not only research but debate and discussion about how and why and the ethics of why we want to be involved.

Lived experience groups across the country routinely decide on what the most important things are to them; especially our national organisations and as these things are the things that really matter to us, I would tend to, at least to some extent, base some of the research agenda on these issues. It is after all, really important that research reflects the issues of the community whose lives it is hoped it will ultimately improve.

I am just finishing a report on the issues people face in Argyll. It involved around two hundred and thirty people. Key to many people were the wellbeing hubs, resource centres and link clubs which operate in a completely different way to statutory services. They are places we go to for family, company, friendship, activity, food, laughter. I would find a way of measuring their worth not by health outcomes or recovery goals but by asking us what it is that makes us say they keep us going when we are not acutely ill.

I would also look at what it is that creates a sense of belonging and community in such places and other environments; strangely things like this may ultimately reduce the coercion some of us face. I would look at people’s views of the beleaguered statutory sector where people increasingly say they feel the staff have lost purpose and tend to spend more time working out how not to help them rather than provide the support people desperately need. I would wonder why some people are so desperate to get help that they risk getting arrested so that they or their loved one will be seen. These are not necessarily grand intellectual and philosophical issues but they have a huge impact on our faith in the service and our wish to engage and ultimately our wellbeing and health and the possibility that we will end up sectioned.

Despite the harsh and fractured services we have that offer us help, many of us love to talk and share and learn and laugh together. If we have safe places where we can natter and share our ideas and hopes of a better world or even just feel a bit better by being heard, then we sometimes flourish. We do not refuse to engage with others, instead we find connection and delight in the telling and bearing witness to our story.

We therefore become rich and treasured resources for you. We stopped being people just to be studied and consulted years ago; instead for decades now we have been making meaning out of our collective experiences. And if taken seriously that can be mutually rewarding for everyone.

In collective advocacy and in Involvement groups as you can find here in the commission and in self help and support groups and in wellbeing hubs you find people from a variety of backgrounds just like there are in this room. Some of us have PHD’s, some of us are professionals, some are like me and illness made academia and so on impossible. Some of us have never worked and never think we will do, some of us strive to work. We have a variety of perspectives but common to many of us has been the fact that we have used our subjective experience to work out what might be better for our community. We are not confined to our own experiences but also look at our friends and peers’ experiences. We are maybe as capable as finding meaning from what we go through in our communities as anyone else. We are possibly the most credible people who can speak on what the key issues are that we face collectively.

To make an exciting research agenda I would follow the recommendations of the mental health law review and invest in the communities who try to speak for us – we are vibrant and interested and with a proper infrastructure could really help those of you that do not have lived experience understand what is important to us and what we think would make a difference to what we go through.

At the same time, I would take another recommendation that the mental health law review made and invest in the voice of diverse ethnic communities around mental illness because we know that at present a voice around mental illness is not as inclusive as it should be. I would seek out groups like Pachedu  but also, using similar principles, I would seek out other communities whose voice is getting stronger and stronger and who are maybe not included in the classic research agenda; people from the homeless community, the recovery community and those who have been involved in the justice system; many of whom speak with each other and have shared their experiences and opinions over and over  again.  

I do like the idea of increasing our involvement in and influence over research; basing it in our communities and our experiences and realities.

And of course the debates we have around legislation. I will immediately agree that genuinely involving us is difficult but involve us we must. We don’t believe men should decide on the best interests of women in this country  or I hope we don’t and I don’t think people with no background in lived experience can be the sole decision makers of legislation which outlines our freedoms, our lives and rights, especially when our legislation review broadened the scope of legislation to the cultural economic and social rights we so often do not have met.

But it is emotional, if your son has died from the side effects  of medication, or you feel alienated and oppressed and cannot get over the trauma of forcible treatment you do not think you should have had then your emotion is likely to run high.

There is of course the need for all research to be of as good quality as it can be but there is no reason that it shouldn’t be if it includes the lived experience voice and experience. I sometimes encounter researchers who have lived experience and often find they understand me in a way I can’t quite explain – they help me enquire within myself and speak more openly and frankly.

I am a long distance from academia, but I wonder at the situation of people like me; sometimes I yearn to contribute our experience and ideas and luckily often have the chance to do so but I have no degree. I could never be a proper academic or researcher. Many people with psychosis like me, got ill at university or never reached university. It sometimes makes me wonder about access and education and people with a mental illness.

In the three weeks before I wrote this speech, I visited two secure forensic rehab wards. In one an OT assistant had created the most stunning flower sculptures in many of the public spaces.

I would have happily travelled a number of hours to an arts centre to see them.

They were exceptionally delicate and made the spaces I was in a pleasure to sit in and meet people in. They had been in place undamaged for the last six months. In the other ward I went to; the ceiling was covered in dark unpleasant stains which, when I asked about them, turned out to be caused when patients, in frustration, hurled cups of coffee at them. On both wards people talked about, how when you know other patients have been there for years and years, the motivation  to do anything or think at all about recovery can fall away, when you have nothing left to pin your hopes on.

It reminded me of a Substack article by Awais Aftab on the physical environment in secure care – the balance between restrictive safety and its effect of making long term secure wards which are actually people’s homes, into unbearably horrible places to live in, where it is almost impossible to find hope or pleasure again.

 I would love to see research on the impact of someone placing beautiful flower sculptures in an environment where people have often given up and are not expected to care for delicate things of beauty around them.

What does that do to the environment, the atmosphere, how does this influence hope or violence or even basic interactions between people?

Thank you so much.