Learning Disability Mortality (death) Review programme

LeDeR policy 2021

The new LeDeR policy aims to set out for the first time for the NHS the core aims and values of the LeDeR programme and the expectations placed on different parts of the health and social care system in delivering the programme from June 2021. It will serve as a guide to professionals working in all parts of the health and social care system on their roles in delivering LeDeR.

This policy outlines a number of changes to existing LeDeR processes. Some of these changes, such as the new review process, will need to be implemented by local systems in line with the changes to the web-based platform which will go-live on 1 June 2021. Other changes, such as staffing models and local governance arrangements will need to change in line with the development of integrated care systems and relevant human resources processes. By 1 April 2022 all changes within this policy must be implemented by integrated care systems.

The policy has been co-produced with bereaved family members, people with a learning disability, health and social care professionals and people from across the LeDeR workforce. We also commissioned self-advocacy groups to work with us on some of the challenging questions about the future of the programme and Ipsos Mori to do a piece of research on the views of our stakeholders.

This work has enabled programme developments and LeDeR policy to be shaped by the people at the heart of this work.

People with a learning disability often have poorer physical and mental health than other people and may face barriers to accessing health and care to keep them healthy. Too many people with a learning disability are dying earlier than they should, many from things which could have been treated or prevented.

The learning from deaths of people with a learning disability (LeDeR) programme was set up as a service improvement programme to look at why people are dying and what we can do to change services locally and nationally to improve the health of people with a learning disability and reduce health inequalities. By finding out more about why people died we can understand what needs to be changed to make a difference to people’s lives.

What is a LeDeR review?

In a LeDeR review someone who is trained to carry out reviews, usually someone who is clinical or has a social work background, looks at the person’s life and the circumstances that led up to their death and from the information they have makes recommendations to the local commissioning system about changes that could be made locally to help improve services for other people with a learning disability locally. They look at the GPs records and social care and hospital records (if relevant) and speak to family members about the person who has died to find out more about them and their life experiences.

Reporting the death of a person with a learning disability

Anyone can notify a death to the LeDeR programme and the more deaths we are aware of the more accurate the information we have will be.

To report a death please use the online form on the LeDeR website or call 0300 777 4774.