Learning from lives and deaths – People with a learning disability and autistic people (LeDeR)

LeDeR is a national service improvement programme looking at the lives and deaths of people with a learning disability and autistic people. The programme aims to improve care, reduce health inequalities and prevent premature mortality.

People with a learning disability die on average 20 years younger than the wider population. To understand why this is happening, we undertake a formal review every time we are notified that a person with a learning disability or an autistic person has died. As part of the review, we look at the health and social care services the person was receiving, we talk to family and carers, and we review care notes. The review helps us find out what is working well for our communities, and what we could be doing better. It helps drive improvements for the communities based in Leicester, Leicestershire and Rutland.

Our LeDer Top Ten Learning into Action Points

We have completed over 340 reviews across LLR since we started running the LeDeR programme locally in 2020. These reviews have given us a very clear picture of some of the areas we need to work on to improve outcomes for our communities. We have identified ‘Top Ten Learning into Action Points’ for healthcare professionals to focus on to ensure our communities live good, happy lives. 

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Graphic presenting ‘Top ten actions you can take to improve the lives and prevent the premature deaths of people with a learning disability and autistic people (aged 18 and over)’ for healthcare professionals. 1. Inform us when an autistic person or a person with learning disabilities dies. You can do this online at https://leder.nhs.uk/report 2. Accurate recording of ethnicity is essential and should be a priority. Please ensure to report the deaths of those from the city and from diverse ethnic backgrounds. 3. Mental Capacity Act assessments really do make a difference - review your practices to ensure compliance and share your experiences. 4. Don’t estimate weight - please measure, using appropriate equipment, and record accurately. List of scale locations: https://www.leicspart.nhs.uk/43051-2/ 5. Some people have behaviours that challenge which will also change as they grow older. Please put plans of care in place early to support people’s behavioural and healthcare needs for life. 6. Have meaningful conversations about end-of-life in advance to ensure people are able to take an active part in discussions about their care. 7. Screening inequities exist, and every effort should be made to improve uptake. Speak to your Primary Care Liaison Nurse for support - lpt.pcln@nhs.net 8. Stop prescribing psychotropic medications unless they are necessary. For STOMP/STAMP enquiries please contact: lpt.ldstomp@nhs.net or lpt.camhs-stomp.stamp@nhs.net 9. Aspiration pneumonia happens as a consequence of a precipitating event. Early identification of risk factors and ongoing management saves lives. 10. Blood tests may sometimes needs to be done differently. Do not delay in using reasonable adjustments. Refer to specialist learning disability services if needed - lpt.ldaccess@nhs.net