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On behalf of the Three Research Schools' Mental Health Programme Magdalena Mikulak talks about the outputs of their workshop on research about people with learning disabilities and suicide in our latest blog post.

Fig 1. Picture of a paper tablecloth, with writing on it and a paper ‘self-care’ heart from the workshop. Source: Author. © Author

‘I thought suicide was a place you go to’ – Why we need more research about people with learning disabilities and suicide

By Magdalena Mikulak, Sara Ryan, and Chris Hatton

Suicide affects many people – the families, friends, and communities of those who die. People with learning disabilities, like their non-disabled peers, can experience suicidal thoughts and die by suicide. In our research with people with learning disabilities, people have talked about suicide attempts or shared experiences of someone close to them dying by suicide. We wanted to be able to better understand these experiences but quickly found out that, unlike the wider population, there is not much research about or information for people with learning disabilities that relates to suicide.

Historically, there was an assumption that people with learning disabilities are not capable of ending their own lives. This ableist belief continues to shape our society. The result is that we have almost no data on suicide and people with learning disabilities. The 2021 Learning from lives and deaths – People with a learning disability and autistic people Annual Report (LeDeR) does not mention suicide. It seems that as a society we are not interested in suicide by people with learning disabilities and what follows, and we do not invest time and resources into preventing it from happening.

As researchers and activists, we were left with an uncomfortable puzzle that pushed us to start the conversation: we decided to organise an online workshop about people with learning disabilities and suicide. We were fortunate to secure a small pot of money from the NIHR Three Schools Mental Health Programme. The idea was for researchers, people with learning disabilities who are also self-advocates, and health professionals to come together to talk about a) what research has been done on this topic b) whether we need more research and c) what kind of research would be helpful to people with learning disabilities and how it should be done. We planned the workshop for October 2022.

Because co-production is at the heart of how we work, we invited Sunderland People First and Inclusion North, who run the Stop People Dying too Young Group to help us think about the workshop and how to involve people meaningfully. Our initial meeting in August 2022 made it very clear that people wanted to talk about suicide, but that with many self-advocates sharing difficult personal experiences, we needed to be better equipped and prepared to ensure people are supported to contribute safely, and meaningfully. We decided to split the workshop into two. The first part was to continue as planned with an online workshop for researchers and health professionals, but the second part was now an in-person meeting with self-advocates, run by professional facilitators.

We could spend some time telling you what happened in the first meeting, but we won’t. It will suffice to say we arrived at what we already suspected: research is scarce and what exists is very medicalised, language is dated, and data is non-existent or incomplete. Co-production does not feature at all. People with learning disabilities are patients/cases, at times brutally reduced to notes kept by psycho-medical professionals about their mental health. Conclusion: we need better data. We need to work with people with learning disabilities in any future research.

Now, for the second meeting. We spent weeks planning it with our self-advocacy partners. We made information in easy read format, tweaked, and re-tweaked it. We talked about ways to keep people safe and supported. We talked venue. We talked costs. We booked our journeys to Newcastle. Sally and Michelle from Paradigm, our facilitators for the day, bought chocolates and paper tablecloths. When the day finally came in early December 2022, we could not have been more ready, and it could not have gone better.

Sustained by tea, coffee, sweets, kindness, and some Abba, we covered a lot of difficult ground. We talked about people’s understanding of suicide. One self-advocate shared that they used to think suicide was ‘a place you go to’. We talked about how hard it can be when other people turn away from talking about suicide. We talked about what might make someone want to end their life. People shared personal stories. A wonderful, warm, person at our table shared how they used to listen to the Suicide is painless song on repeat when locked up in a hospital. It was hard to hear, it was raw, but we had strategies to support people and people were generous and kind in their sharing and listening. We talked about the things that help people feel better when they are thinking about ending their own life.

We drank more tea and coffee and ate more sweets. We asked about what next. People said they wanted more research, more evidence, and better data, but also and importantly, they wanted the human stories behind any numbers. We agreed that any kind of research should include people with lived experience, that it should be co-produced with people with learning disabilities/ their families and that it should aim to make their lives better.

More tea and coffee. On paper hearts we wrote about the things we were going to do that evening to look after ourselves. Pictures, thank yous, goodbyes. Huge sense of gratitude and even bigger sense of responsibility.

In our work, we continuously come across experiences of inequality (in both life and death) that people with learning disabilities face. Suicide research and prevention appears to be yet another area where people with learning disabilities seem to matter less. This needs to change and we need to make it happen.

If you need help today, you can speak to Samaritans call 116 123 or Papyrus call 0800 068 41 41.