63% of people with learning disabilities pass away before the age of 65, which is disproportionately high compared to only 15% of the general population. Many of these deaths are unjust and avoidable. Maudsley Learning and Estia Centre are leading a project investigating the challenges that the specialist and wider healthcare workforce face in regard to The Learning from Deaths of People with a Learning Disability (LeDeR) review programme.
The LeDeR programme is an annual report that details the deaths of people with learning disabilities over the age of four. It is part of the NHS Long Term Plan, which commits to continuing the LeDeR programme in order to improve the health and wellbeing of people with learning disabilities. Rather than being an investigative report which holds individuals and organisations accountable for death, the LeDeR programme aims to summarise findings so that we can learn from past lessons to ensure a better future. Therefore, the review encourages honesty and transparency of information sharing in a trusted and safe environment. Learning from the LeDeR programme is done by continuously reviewing services based on the findings to identify areas of improvement, which receives contributions from families and carers of those who have passed away. Further, the report can be used as a resource that gives an annual update on improvements and pitfalls in the care of people with learning disabilities, in order to see whether initiatives within the previous years have worked as intended.
Maudsley Learning have received funding to develop a regional project for Southeast NHS services, namely:
- Buckinghamshire, Oxfordshire and Berkshire West
- Frimley Health
- Hampshire and the Isle of Wight
- Surrey Heartlands
- Kent and Medway
- Sussex Health and Care Partnership
The project will investigate the experiences, perspectives, and challenges within healthcare resources for people with learning disabilities and/or autistic people, related to LeDeR report findings. This includes running a series of surveys, focus groups, and interviews with people with a learning disability and/or autistic people, their parents and carers, and the general and specialist healthcare workforce. As a collaborative process, the project involves people of all ages who have lived experience at every stage. This includes a steering group, and people with lived experience within the project team, allowing for contribution across the project in terms of its development, evaluation, and outputs.
The results from the project will in turn be used to create and deliver an intervention for the Southeast NHS healthcare workforce, to help tackle health inequalities for people with learning disabilities and/or autistic people. This intervention will be trailed and evaluated in order to assess its effectiveness. The results aim to highlight, report on, and tackle any barriers and issues within the workforce that prevents best practice related to the LeDeR programme.
We are currently interested in hearing the voices of the specialist and/or general health and social care workforce from Southeast NHS Trusts.