Current research

Improving the care people with learning disabilities receive in hospital: an ethnographic study examining the experiences of people with learning disabilities and the organisation and delivery of their care (NIHR206167) 

Adults with learning disabilities experience poor hospital care, which includes serious missed care (inadequate food and drink, withheld blood tests and failure to notice serious illness). This results in avoidable deaths, hospitalacquired infections, infections and blood clots after operations, bed sores, and serious drug reactions. Family carers are also over-relied upon to provide 24-7 care. People with learning disabilities are often ignored with staff speaking to carers instead. However, carers’ serious concerns have been ignored, leading to avoidable deaths. Despite the 
support of Learning Disability Liaison Nurses and pockets of good practice, there is strong evidence that care by ward staff is unpredictable and can be unsafe, but we do not understand why.

There has been no detailed research following the hospital care of adults with learning disabilities at the ward level during an admission. People with profound learning disabilities have never been included in research examining hospital care except through observations or carer’s descriptions. This study will:

1. explore care experiences during a hospital admission from the perspectives of adults with learning disabilities (including people with profound learning disabilities) and their carers.
2. Examine how care is organised and delivered for adults with learning disabilities during a hospital admission.
3. Use the findings to co-design guidance with people with learning disabilities, carers, and ward staff to improve care.

Our study will follow the care of 8 adults with learning disabilities (including people with profound learning disabilities) during a hospital admission, in two hospitals in England. We will use tailored communication to support people in sharing their experiences, including Talking Mats, stories and photos. We will spend time with people with profound learning disabilities, learning how they communicate and carefully interpreting their non-verbal communications with 
their carers’ support. We will also talk to people’s carers. We will observe people’s care, meetings about their care, talk to staff about their care, and read care notes (if people agree). We will write this down and analyse it to learn how care could be improved.

We will work with people with learning disabilities, carers, and hospital staff to co-design resources to improve ward care for people with learning disabilities. This will include:

(a) recommendations to the NHS on adapting ward care; 
(b) a masterclass on ward care for participating hospitals;
(c) a briefing to NHS England and the Care Quality Commission on improving how ward care is checked and managed; and
(d) guidance and a toolkit on making ‘codesign’ more inclusive, including for people with profound learning disabilities. 

Our team includes a person with a learning disability and a family carer, who will steer this project. We are working with people with learning disabilities and carers throughout our study to make sure it reflects their needs.