The study aims to understand how medical symptoms are investigated, managed and diagnosed in people with a learning disability. It will explore the experiences of

  • people with learning disabilities
  • carers
  • health and social care professionals
  • administrators
  • people involved in implementing innovations

It will also identify and understand new approaches designed to improve the investigation of medical symptoms and the overall experience of care.

Who can take part?

People can take part who:

  • have a mild, moderate, or profound and multiple learning disability
  • are over 18 years old
  • have experienced medical symptoms that needed to be investigated by healthcare professionals (in primary or secondary care) in the last 3 months

We also welcome participants who are directly or indirectly supporting the diagnostic pathways with people with learning disabilities. These participants must be:

  • Over 18 years old
  • A family member, carer, or advocate of a learning disabled person who has experienced a medical symptom that required investigation by a health care professional in the last 3 months
  • OR a health and social care professional from primary care and diagnostic services within the Integrated Care Board
  • OR a stakeholder working within the Integrated Care Board
  • OR a national or international expert in supporting the diagnostic pathway for people with learning disabilities

What does taking part involve?

If you decide to take part, you will be given information about the study in a format that is accessible to you.

You will have at least two days to think about you would like to take part before a researcher contacts you.

If you are interested, the researcher will arrange an interview. It will be at a date and time that suits you.

At the start of the interview, the researcher will explain the study. They will check that you consent to take part.

You the researcher will then ask you some questions. 

People with a learning disability will be offered a £25 voucher for taking part.

For more information or to take part, please email Donna.Douglas@cntw.nhs.uk or harry.brown@cntw.nhs.uk