The experiences of adults with learning disabilities and their paid or family carers of receiving hospital care and treatment

Claire Kelly, Marcus Redley, Karen Thompson, Sara Jones, Angela Thompson, Louise Maris and Tony Holland
(CIDDRG: University of Cambridge)

Why we did this work

• Men and women with learning disabilities can have problems accessing healthcare services, such as hospitals, in a way that fully meets their medical needs. This can have a bad effect on their health and quality of life (Mencap, 2007, 2012; Michaels, 2007; Emerson & Baines, 2011).
• We wanted to find out men why and women with learning disabilities and their paid or family carers think it can be hard for them to use hospital services.

What we did

• We interviewed 20 men and women with learning disabilities and their paid or family carers about their experiences in a hospital in the East of England.

What we found

• Men and women with learning disabilities and their paid and family carers gave conflicting notions of what hospital care is like. We want to explore how and why they can hold such contrasting views.
• Examples include:
  • Carers said that when they made complaints they were not acted upon while also praising the effort hospital staff make with limited resources.
  • Men and women with learning disabilities liked hospital staff and thought they were friendly, but also said that they limited their choices and autonomy while they were a patient which was frustrating.