Learning Disability Week: How people with lived experience are co-producing our services
Pictured is the Experts by Experience group at Suffolk's Learning Disability and Autism Specialist Services.
As part of Learning Disability Week (16 - 22 June), Norfolk and Suffolk NHS Foundation Trust (NSFT) is highlighting how people with learning disabilities and autism are at the heart of shaping services they use.
Our Experts by Experience Group, based within the Learning Disability and Autism Pathway, is made up of people with lived experience of learning disabilities and/or autism. The team plays a vital role in making sure our learning disability and autism services are accessible, appropriate, and shaped around the real needs of those who use them.
In August 2018, Paul McCluskey, a Green Light Peer Support Worker, was the first person with learning disabilities to be offered a job in the Trust. For almost two years, Paul has worked with the experts at Walker Close and says he has "enjoyed every moment".
Paul's role sees him transforming ordinary documents into easy read which has been a legal requirement since 2016 as part of the Equality Act. He also works directly with fellow experts and professionals, attends meetings and awaydays, and helps with writing and presenting training.
He said: "I have enjoyed every moment working with the experts at Walker Close as we all work hard, have fun and will always be winners and never afraid of a challenge."
Paul McCluskey, a Green Light Peer Support Worker at NSFT.
As well as improving accessibility of letters and documents, the Experts by Experience Group have also supported the learning disability and autism services by carrying out discharge interviews with service users, fundraising for a sensory garden at Walker Close, being on interview panels, delivering and co-producing reasonable adjustment training, and creating the Being Together participation group.
Members of the participation group recently took part in a video for a Trust Board meeting to demonstrate what it's like to be a part of the Experts by Experience Group and what they are passionate about working on. The presentation helped shape the discussion at the Board meeting and reinforced the Trust's commitment to using experts' experiences to build continuous learning and improvement.
Kirsty Wilkinson is an Expert by Experience and has been diagnosed with autism. She decided she wanted to use her experience to make a change after her daughter, who has ADHD and is on the pathway for autism, did not receive the support she needed. One of Kirsty's priorities is reasonable adjustments training.
She said: "With my ADHD I've struggled to stick to the same job throughout my whole life. I first said to my mum when I got offered this position, I don't have to worry because they've taken me on knowing the real me and my struggles and they just support with me that."
In May, the Experts by Experience Group was nominated for a regional co-production award, recognising their dedication to working with local people and communities as equal partners to co-design, co-produce and co-deliver safe, high-quality, person-centred care that they need.
While the team was not shortlisted, the nomination itself is a testament to their influence and the value the Trust places on lived experience in everything it does.
Experts by Experience David Skipper and Geoff Munday at 2024 Safer Kinder Better Awards.
Susie Howlett, Associate Director of Operation for East Suffolk Specialist Service said: "We all recognise the value of co production in the Trust, but we may overlook people with the seemingly 'smallest voices' i.e. people living with a learning disability or autism.
"However, our group of 12 Experts by Experience truly have the loudest voices, clear opinions and great ideas that shouldn't be overlooked - they simply embody this week's theme of 'Do you See Me?'. It is important to ensure those voices are heard as valid opinions of representatives for this client group."
Chief Patient Experience Officer and Deputy Chief Executive Cath Byford said: "This Learning Disability Week, I would like to take the opportunity to thank all our Experts by Experience for everything they do to support and improve our services - not just this week, but every day of the year. Their selfless contributions have given us key insight into the services we offer, and we thank them for helping to improve the outcomes of those we care for."
Experts are involved at every level of service, including quality improvement projects, benchmarking activities and governance at NSFT. If you live in Suffolk, have lived experience, and want to help shape NSFT's learning disability and autism services, please email beingtogether@nsft.nhs.uk to find out more.
Media assets including photos and an MP3 file of Kirsty Wilkinson on her role as an Expert by Experience: Learning Disability Week PR assets.zip [zip] 4MB