Patients and Carers

Patient involvement in the Learning Disability Improvement Standards project

For round seven of the LDIS benchmarking project, data from patients and carers was collected through national, centralised activities. This included:

  • Patient views from three patient focus group meetings

  • A Friends and Family survey, which was sent out as a general survey rather than associating responses with any particular organisation.

Patient Focus Groups

As part of a national effort to enhance NHS services, NHS Benchmarking Network partnered with Learning Disability England (LDE), a member led organisation working to improve the lives of people with learning disabilities. LDE supported the delivery of three regional patient focus groups, conducted to gather feedback from individuals with learning disabilities, autism, or both. These sessions provided a vital platform for participants to share their lived experiences and offer insights to help shape more inclusive and effective healthcare services.

The discussions were structured around questions related to the NHS Learning Disability Improvement Standards, ensuring that the voices of people with learning disabilities were central to the conversation. The goal was to reflect these voices in future service improvements, ensuring that NHS care is accessible, supportive, and person-centered.

The focus groups were facilitated by the following organisations:

These organisations have extensive experience in supporting individuals with learning disabilities and autistic people, and their expertise was instrumental in creating a safe and welcoming environment for participants to share their feedback.

Findings from the patient focus groups can be found here.

Learning Disability England was founded in 2016 and is a registered charity. Find out more about LD England here.

Friends and Family Survey

Friends and family of people with a learning disability who had accessed hospital care in the previous year also had an opportunity to complete a survey to comment on their experiences. A survey link was circulated via LD England’s network and was also shared by Trusts participating in that year’s LDIS project. The survey was not linked to a specific Trust, and therefore the findings provided a general idea of the experiences and opinions on services provided to people with a learning disability from their friends and family.

Findings from the friends and family survey will be published with the Learning Disability Improvement Standards Year 7 Report.