63% of people with learning disabilities die 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. Estia Centre and Maudsley Learning have teamed up with the Intellectual Disabilities Programme and experts by experience to lead 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. Additionally from 2021 the LeDeR work includes reviewing the deaths of autistic people without a learning disability. The programme aims to summarise findings so that we can use past lessons to ensure a better future for some of the most vulnerable people in our society.
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. The report can also be used as a resource that gives an annual update on improvements and pitfalls in the care of people with learning disabilities (and going forward, autistic people), in order to see whether initiatives within the previous years have worked as intended.
In order to help further operationalise the learning, education and training of both the specialist and wider workforce around LeDeR, Estia centre and Maudsley Learning received funding via the Intellectual Disabilities Programme to develop a regional project involving as many stakeholders from across the region as possible. This includes the 6 South East Integrated Care Systems (ICSs), namely: Buckinghamshire, Oxfordshire and Berkshire West; Frimley Health; Hampshire and the Isle of Wight; Surrey Heartlands; Kent and Medway; and Sussex Health and Care Partnership.
This work will investigate the experiences, perspectives, and challenges within healthcare resources for people with learning disabilities and autistic people, related to LeDeR report findings. This will involve running a series of surveys, focus groups, and interviews with people with learning disabilities and 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 meaningful contribution across the project in terms of its development, evaluation, and outputs.
The results from the project findings will explore the practices that are currently implemented within each of the 6 South East ICSs in relation to LeDeR and improving outcomes for people with learning disabilities and autistic people. The information from these findings will be used to compile a report highlighting good practice and identifying and recommending what might need to happen next. The results also aims to highlight, report on, and tackle any barriers and issues within the workforce that prevents best practice related to the LeDeR programme. This report will be made freely available across the system and to whoever else is interested in order to ensure that the learning from it reaches as many people as possible.
How can you help?
As part of this work, we really need to hear the voices of people with learning disabilities and/or autistic people, their families and carers, as well as that of the specialist and general health and social care workforce. We know how busy everyone is at the moment, but in order to make this project meaningful and useful and really help change lives for the better, it is essential for experts with lived experience to feed into it. If you are interested in taking part in the project and would like to find out more, please contact aleks.saunders@slam.nhs.uk or ruwani.ampegama@slam.nhs.uk for further details.
Workforce Development for & with People with Intellectual Disabilities 