Jayne Simpson, Public Contributor at Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS) shares her experience of taking part in the children and young people's mental health, neurodevelopment, neurodiversity and special educational needs and disabilities' (SEND) community of research practice event, held in September 2022.
I’m Jayne and I recently became an ARC KSS Public Contributor. We are members of the community who have lived experience of various life issues - health conditions, disability, additional support needs for one reason or another, either directly, or as a result of supporting family, friends, neighbours etc. We use our experience to work with the ARC research community to make sure that research projects have the needs of local people at the heart of them and get to see the benefits of the research. I came to the role as a mum of a young adult autistic daughter, with lots of experience of using health and social care services.
Straightaway, I was made to feel really welcome and a valued part of the ARC. The Community of Research Practice Event, focussing on neurodevelopment, neurodiversity and children and young people (CYP) with Special Educational needs and Disabilities (SEND), was held in person, at the University of Sussex. For me, that in itself was a scary prospect, as I hadn’t been to a large in-person event since the pandemic struck and wasn’t sure if I was brave enough to walk into a room of 50 plus people; never mind speaking to any of them and managing to get my stories of lived experience heard.
I sat at a table of really friendly and welcoming people, representing a wide variety of CYP's services. The majority of them were unaware of the public contributor role and were keen to learn more about it and how it can enhance research. After a short introduction from Dr Ian Male, Director of Research at Sussex Community NHS Foundation Trust and Becca Randell, CYP Mental Health Implementation Lead at ARC KSS, we had a really interesting presentation from Devyn Glass, an ARC KSS Research Fellow, on digital storytelling, that captured the voices of CYP. I found the use of digital technology to help young people to express some very difficult emotions really moving. Afterwards, I was able to speak to Devyn about how she’d set this project up and the barriers to making it work for the young people.
Later, we had the opportunity to have open table discussions around perceptions of the experiences of neurodiverse and SEND CYP and their families, as well as what gets in the way of undertaking research. I was so encouraged by how genuinely interested people were in my lived experiences of using the sort of services a lot of them are involved with. I really got a sense of a big culture change in terms of researchers seeing the benefits of working with members of the local community and listening to their ideas in terms of improving services.
I thought the lunch break would be a good opportunity to get a breath of fresh air and to prepare for the afternoon sessions but, there were so many interesting people to talk to and still so much I felt I could learn from them, that, instead, I spent the time networking. It was great to hear more about the work people were doing and the services they were developing; valuable information that I could take back to the community groups that I am part of. It really made me realise that the more we can all share ideas and experiences, the more people we can reach and include, leading to better outcomes.
After lunch, we had presentations from several attendees showcasing research from across Kent, Surrey and Sussex. It was great to hear how much is happening and the importance of making sure that we get that out there in our local communities.
We ended with a ‘World Café’ a chance to join tables with various themes where participants could showcase research and promote collaboration. I’d been asked to co-facilitate the Autism, Attention Deficit Hyperactivity Disorder (ADHD) and Learning Disability table which attracted the most interest. And, to be honest, this was one part of the day that I personally found overwhelming, as co-facilitating with people who looked like they were very used to these sorts of events, felt like a bit of a step too far for me.
But, it is still early days, in terms of having the involvement of public contributors, and since the event we’ve had some really positive conversations about how to make these events even more inclusive. We’ve also spoken about the importance of including those with lived experience at the planning stage.
I did feel completely exhausted after the event, but I also felt an overwhelming sense of really having been part of something exciting and hopeful. It felt really good to know that my family’s experiences and those of others like us could help to inform future research within our area and lead to better lives for all of us.