‘Champions and challenges’: An in depth look at the health and social care experiences of those who have a learning disability and/or autism within Luton

Healthwatch Luton carried out a range of activities to understand the healthcare experiences of people with learning disabilities. They wanted to hear from people who were living independently or with caring responsibilities of those with learning disabilities in Luton. The activities included attending meetings and Boards on behalf of Healthwatch Luton, meeting with commissioners and key professionals in services and holding forums.

They identified some key issues which included lack of right staff at the right time to support individuals; very few parents and carers knew that children with learning disabilities ought to have an annual health check; difficulties in accessing services; confusing criteria and pathway to assessment services for children and young people, which confused a lot of parents; a lack of joined up approach to individuals’ care; unclear definition of learning disabilities and it was noted by parents and carers that their voices were not always listened to.

Having carried out this project, Healthwatch Luton have made some recommendations for health service providers, commissioners and practitioners within the Luton system.