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 is going to be collected through national, centralised activities. This will include:

  • Patient views from three patient focus group meetings

  • A Friends and Family survey, which will be sent out as a general survey, rather than associating responses to any particular organisation

LD England will be supporting our work with patients and carers in 2025. Learning Disability England is bringing people and organisations together to create a movement for change where people with learning disabilities, families, friends and paid supporters come together on an equal basis. As a membership organisation, members work together to build a world where people with learning disabilities have good lives with equal choices and opportunities as others.

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

In partnership with…

LD England are working with the team to help run three patient focus groups across different regions in England. This work is being delivered by local teams within the LD England network, with a set of questions and resources produced by NHSBN and LD England. Our local partners are:

Dudley Voices for Choice

Skills for People - Newcastle

Ace Anglia

Friends and Family Survey

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

Are you the family member or carer of a person with a learning disability who has accessed hospital services in the last year? If you would like to feedback on your experiences and input into the LDIS data collection, please complete the survey: https://surveys.nhsbenchmarking.nhs.uk/x/63180-180