Speech
Thank you, Mick, and thank you to Comensus, for inviting me here today.
Explain outline of speech (on slide)
Seven years ago, I was sitting in a prison cell, dreaming about what I would do when released. I had a relatively recent diagnosis of borderline personality disorder (BPD) and had quickly learned just how much stigma and misunderstanding surrounds the diagnosis. The judge in my case knew nothing about it and was persuaded by my local community mental health team that it was untreatable and that neither they, nor the probation service, were willing to supervise me. This resulted in me being given a custodial sentence rather than a community or suspended sentence.
I learnt a lot about injustice in prison and how both the mental health and criminal justice systems were failing people, and I wanted to do something about it. I wanted to help people. The thing was, I had no idea how to go about it. Like most people in prison, I knew nothing about experts by experience and how they were working to bring change. As far as we were concerned, no-one cared about us other than our own families and friends.
I have decided to include my prison experience in my speech because health and social care is a vital part of it. Women especially, experience poor physical and mental health and many are living with trauma. I look on this part of my life, and the events leading up to it, as my crisis period. The time since my release I see as my recovery period.
I know there are a lot of people here that are heavily involved in patient and public involvement, and I wouldn’t presume to know more about it than any of you. I want to share my story with you to highlight some of the different opportunities that I found, and also, some of the pitfalls.
So, back to my prison cell . I would start a support group, I thought. Having never attended one myself, I thought they were all run the same, like AA . Hello, my name is Sue and I have borderline personality disorder . Of course, it didn’t turn out like that.
After my release, I was put in contact with someone at Rethink Mental Illness, who helped me to set up the Derbyshire borderline personality disorder support group. It’s now in its seventh year and has helped over 400 people, including several from overseas.
I have always been proud of the group, of course. It provides a space where like-minded people can come together and support each other. But I wanted to do more. I wanted to get involved in bringing change, so that our group will be supplementary to, rather than in place of, adequate treatment.
Through Rethink, I was introduced to Healthwatch, and joined their advisory panel, which was made up of experts by experience. Through my work there, I was put in touch with an agency in London, who were working for prison reform. And through them, I became part of the East Midlands Health & Justice team.
All this happened relatively quickly, but I was enjoying it. I was convinced that I was making a difference, and in some ways, I was. I went into prisons to interview people with cancer on their experiences of treatment. I co-produced and co-delivered a pre-release skills course in a women’s prison and then developed a best practice guide.
I even went back to the prison I was in. I hoped I would see the officers who had, so often, accused me of being an attention-seeker. I wanted to say ‘see, you were wrong about me!’. Unfortunately, or perhaps fortunately , I didn’t see anyone I knew.
I learnt a lot from going into the various prisons. As a prisoner, I could only see one side, which wasn’t always positive. But going in as a researcher, or to deliver a skills course, gave me a different perspective. I saw how overstretched the officers were, as well as the serious lack of communication between each sector of the prison. My colleague and I sat waiting for over an hour for an escort to take us to the interview room because the reception staff were busy and forgot to ask for them.
I thought back to a time I had asked an officer to take me to the visiting room. He said he would send someone to fetch me, but they never turned up and I missed my visit. I took it personally and thought they had done it on purpose. But sitting there waiting for an escort, I could see how easily it could happen.
My biggest achievement at that time, I felt, was being part of the east midlands prison partnership board. It was a partnership between the NHS and the criminal justice system, two organisations I felt passionate about. As a board member, I was able to bring items to the agenda, see them minuted, and then actioned. This was true co-production.
I told the board of my experience in prison after I had fell and dislocated my shoulder. I was left in pain for 5 days before they allowed me to go to hospital to have it corrected.
This kind of lived experience can be particularly useful for those at the top, who are unaware of what goes on a daily basis.
On the board was a prison director, who said that my case must have been an isolated incident. It would never happen in any of his prisons, he said. I suggested, politely, that someone in his position would not necessarily be told of such rudimentary matters.
I knew this director didn’t like someone like me being on the board. Whenever I spoke, he either sighed loudly or looked pointedly at his watch. Fortunately, the Chair of the meetings was the one who had invited me onto the board and made sure I had my say. It was agreed that I, and the rest of the health and justice panel, should carry out research into the subject, and this led to another best practice guide for prisons; this one on escorting prisoners to and from the local general hospital.
At another board meeting, I brought up the issue of physical abuse by officers on prisoners. I told of my own experience of this and was advised by the director to bring an assault charge against the officer. I was surprised at this and thought that maybe I had got the director all wrong. But then he followed it up with, of course that would mean that you wouldn’t be able to carry on with this board because it would be a conflict of interest. I told him that I could do more good by staying on the board, but thanked him for his ‘concern’.
In time, the work I was doing started to affect my mental health. I couldn’t risk another crisis and so decided to take stock of which jobs I enjoyed and which ones I found too stressful. Also, which organisations truly believed in PPI, and which included people with lived experience merely to tick a box to say they did? Was I valued, or was I being used.
Firstly, Healthwatch. Several times they asked me to represent them at multi agency meetings regarding crisis plans, but each time, the police would veto it, saying it was inappropriate because of my criminal record. After a while Healthwatch, understandably perhaps, stopped asking, and so I left.
The agency in London got me involved in several things, which I enjoyed. For example, the cancer in prison project. This had been run jointly by a major cancer charity and a university in the south of England, and it led to me, and the two other lived experience members involved in the project, contributing to a published academic paper.
But then I discovered that the agency had charged the project funders an enormous amount of money just to provide our names. The three of us were paid just £45 per day by the agency and, although I didn’t start this work to make money, I didn’t like the idea that the agency was using me to make money for themselves. So, I left. Around the same time, I left the prison partnership board. I felt that I had gone as far as I could and there were others on the health and justice lived experience panel that could take over.
When I was first asked to get involved in this kind of work, I felt grateful for being asked and vary rarely turned anything down. But I wasn’t always fully prepared. For example, the males I interviewed about their cancer treatment were all sex offenders and were serving long sentences. I went there with the idea that they were human beings, and I had a job to do. But, in subsequent weeks I felt guilty.
I had joked with some of them, mainly as an icebreaker so they would feel comfortable. My colleague and I got the information we needed, but several times we had to stop them from talking about their offences. I ruminated about this for a long time after, the guilt came from the knowledge that I had joked with someone who, if defined by their crimes, were monsters. In a way, I felt like I had let down their victims.
But I learned a lot from that experience. Self-care and self-compassion are vital in this kind of work, whether we interview someone else or share our own stories. If you’re new to PPI, I would advise being selective in what you take on and beware of tokenism & exploitation. Consultation and Informing can be just as valuable as coproduction, but it’s important to recognise what you are contributing. Organisations should not use you to tick the co-production box if that’s not what’s happening. Honesty, trust and transparency are vital. Equally important – you should be enjoying what you do.
As you will know, much of PPI work is voluntary. Payment can be a contentious subject, but I think it’s a matter of personal choice. I was recently asked by my local police to do a training session on personality disorders for some of their 999 call handlers. I was interested, of course, and would have done it for free. But then I was told that, although it’s usual to provide payment for this kind of work, as they do with the carer’s association, the hearing and sight impaired, and the various other organisations they invite, they could not pay me because there was no budget for personality disorders. I felt insulted on behalf of my community. Why were we being treated differently? So, I regrettably declined, but said that I would make myself available as soon as the budget allowed for it.
After giving up so much of my work, I had more time to concentrate on my writing. I was, and still am, an academic. Before prison, I was a historian and wrote a book about disabled children during the second world war. But after my crisis period, my work became all about prison reform and mental health. I had several articles published, including one in Custodial Review, a magazine for the police and prison services.
I decided to write an article for an online journal meant for probation practitioners and researchers. I wrote about the importance of boundaries in the probation officer and client relationship, and it was published in 2021. As an introduction to the article, the editor wrote,
In this issue, we have a challenging article from a service user, Sue W. It does not make for comfortable reading but Sue’s analysis of what could and should have been done differently in her supervision – not only by probation but also by community mental health services – is eloquent, and she argues that achieving the right balance between empathy and professional distance requires a sophisticated level of skill and awareness.
I was proud of the article and pleased with how it had been received by the editor. But a couple of weeks after its publication, a colleague told me they couldn’t find it. The journal was online but without my article. Fortunately, I had downloaded the issue as soon as it had been published so I compared that with what was online now. They were the same in every way, except that my article had been withdrawn. I phoned the editor but was told she didn’t want to speak to me.
To this day, I don’t know why that happened, but it had an enormous effect on me at the time. Fortunately, since leaving prison I have been seeing a private therapist and so was able to discuss it with her. She helped me to move on from it and advised me to stick to the voluntary sector for a while. I wrote a few blogs and participated in health and justice panels, podcasts and webinars. And I became a reviewer for Research Involvement and Engagement, a coproduced journal, which focuses on patient involvement and engagement in all stages of health and social care research.
Then, in July 2022, I delivered a speech at Rethink’s 50th anniversary event held at the Houses of Parliament. The event was attended by Gillian Keegan, who at the time was the Minister for Mental Health and Social Care. She listened to my speech, was polite and encouraging and said that yes, things had to change. She wanted to get involved, she said, but I was sceptical, and rightly so. Two months later she moved into a new post, and we never heard from her again.
I decided to try a different way of raising awareness. Every single day of my time in prison I had written something about prison life. What I saw and how I felt. I talked about other prisoners, the officers, healthcare (which was run by the NHS rather than by the prison) and the prison system itself. How it worked on a daily basis. I had kept everything and now thought it was time to turn it into a book, which I published on Amazon at the beginning of 2023. After that, I wrote about the health and justice system from my perspective, using my case as an example, and I published that at the end of 2023.
Looking back at the work I have done, a lot of it has been by consultation and sharing information, as well as co-production. Here’s a few more examples…
Slides
Conclusion
For those of you who are here today from organisations that already include people with lived experience, or are thinking of doing so, please value them. Their insight is extremely important in making services successful. And please look after them. This kind of work can be enormously helpful to someone who is trying to make sense of their own experiences, but it can also be stressful and exhausting.
Like most people working in PPI, I am passionate about the work I do. It’s helped enormously with my recovery, and I have learnt a lot. And I think I have managed to find the right balance in order to stay psychologically safe. I’ve learnt what my limitations are, the importance of self-compassion and of showing compassion to others, and to try and see both sides of an issue.
But we’re always learning, aren’t we? And I’m looking forward to learning about other people’s experiences and different methods and experiences of PPI at this conference. There are some great speakers lined up, so I hope you all enjoy it as much as I know I will.
Thank you!
Sue Wheatcroft 