Experts by experience shaping mental health services
People with first-hand experience of the challenges of living with learning disabilities and/or autism are helping to shape future mental health services.
Norfolk and Suffolk NHS Foundations Trust’s Learning Disability and Autism Service at Walker Close in Ipswich has had great success in developing its experts by experience panel, but Ward Manager Kathryn Barrow says they are always looking to recruit more.
“People living with learning disabilities and/or autism know first-hand some of the challenges faced and equally the strengths that they have. Only by involving experts in the design and delivery of our services will we ever be able to provide a service fit for purpose,” she said.
Experts are involved at every level of service, including quality improvement projects, benchmarking activities and governance.
Projects have included creating a role description and leaflet for experts by experience to help recruit more people and helping lead Learning Disability and Autism combined team events.
Members of the group are also involved in organising a second open day at the unit and plan to use money raised towards creating a sensory garden for the ward.
“They are vital to the team here and are involved in so many things, including planning, presenting and joining away days for our teams, running groups and role development. We are continuing to deliver reasonable adjustment training and are involved in recruitment.” Kathryn said. “Other projects for this year will include getting display screens up and running on the ward and our experts will be designing the content for these.”
The team holds regular participation days to help plan and prepare events and to discuss ideas to raise awareness of challenges.
“As people with lived experience of learning disabilities and/or autism, our experts see things from a perspective that is very different from people without their experiences. As professionals we simply cannot plan and deliver services without our experts and their generosity in sharing their experience with us,” said Kathryn.
Summing up her stand-out moments of working with the panel, Kathryn said: “Laughter! Whatever we do together we laugh and support one another. Watching our experts at work is truly humbling, their dedication and commitment to helping improve services for others is amazing and it is a privilege to work alongside them.”
Deputy CEO and Chief People Office Cath Byford said: “This kind of service user input is a crucial part of how we develop services and staff training. The Walker Close team work hard to make sure the service user voice is represented and supported through regular participation groups and employing people with neurodiversity on the team.”
Asten’s story
Service user Asten has recently joined the Experts by Experience panel at Walker Close.
“I really wanted to share my story and my experiences, and hopefully help people like myself,” she said. Now she is looking forward to meeting new people and “being part of something”.
Asten was diagnosed with autism aged four but was nine when it was explained to her. “I was badly bullied at school and didn’t have many friends.”
Aged 14, she was moved to a Pupil Referral Unit (PRU), which helped her gain her GCSEs and get into college. “I chose to study art and design as I have always loved being creative but unfortunately, I had to deal with mental health issues, and couldn’t complete my course.”
Her creativity, however, is still an important part of her life. “I love being creative and being a writer seemed like it would work for me. I’d tried many different things career-wise but nothing seemed to fit. I knew of a few people online who had published their own books and decided that was what I wanted to do. Unfortunately, I wasn’t a very confident writer when I was at school so I’ve had to learn that confidence throughout my writing/self-publishing journey.”
Most of her books are novels, but she has also written the biography Who Am I? about her life with Autism and BPD and the struggles she has been through. She is aware some of the content within the book may be triggering but says: “If it helps just one person it would have been worth it.”
Asten also loves music. “I always have it on in my flat and am singing most of the day. I also love going to concerts/shows, and I also volunteer as an usher at the New Wolsey Theatre.”
Find out more about Asten’s books via her website. Asten Clarke (asten-clarke.com).