LeDeR involves many different organisations

This is how different people and organisations are involved in delivering LeDeR:

NHS England

NHS England sets out the approach to reviews and manages the LeDeR web platform where reviews are completed.

It also helps local systems to learn from one another so that we can spread learning and good practice across the country. We commission King’s College London and its partners, University of Central Lancashire and Kingston Universities to analyse the data from the reviews to help ensure that we understand the main causes of death each year for people with a learning disability and, from 2022 for people who are autistic, so that we can improve services at a national level.

Integrated care board (ICB)

In every area of England local integrated care boards (ICBs) are responsible for planning and ensuring provision of health services. They are responsible for making sure LeDeR reviews are carried out for deaths in their area.

ICBs are responsible for changing the services provided in their area based on the findings of the reviews in their area, and nationally.

ICBs must publish an annual report about what they have done to change services as a result of the reviews they have completed and a 3-year action plan describing how they will improve services for people with a learning disability and autistic people. Every ICB has an executive lead for LeDeR.

LeDeR governance

LeDeR governance groups are part of the ICB quality governance structures. Their role is to review and develop plans and make sure that the things they are learning from reviews improve the care and treatment of people with a learning disability in their area.

Reviewers present areas of learning, good practice and areas of concern to the local governance group, who sign off the quality of focused reviews and in discussion with the reviewer, agree SMART (specific, measurable, achievable, realistic and timebound) actions which feed into the strategic plan for the local area.

Every LeDeR governance group should have an ethnic minority lead who will be responsible for connecting into local networks and organisations to raise the profile of LeDeR and understand what the additional barriers to services might be for people who are not white and British. The governance group must include people with lived experience.

People with a learning disability, autistic people and families and carers

We know that for a lot of people with a learning disability and autistic people, their families and carers are key to keeping them healthy and recognising when they might be starting to become unwell.

To help us make sure that the NHS is doing everything it needs to we involve people with a learning disability, autistic people and families and carers in the development of services which impact on them. This is called coproduction.

People with a learning disability, autistic people and their families and carers are a very important part of the continuing development and delivery of LeDeR.

GPs, hospital trusts, social care organisations and other health and care professionals

Every health and care professional involved in the care and treatment of people with a learning disability and autistic people can ensure that they support people to live happy and healthier lives. One way of doing this is by ensuring that reasonable adjustments are made where they are needed. In addition, health and care professionals in primary care ensure that annual health checks and medication reviews of autistic people and people with a learning disability (STOMP) take place and health action plans are acted on. Health and care professionals can also support service improvement by taking the learning from reviews and implementing changes in their services for people with a learning disability and autistic people that have been identified. It is a requirement of the NHS Standard Contract section 33.1.3 that where a provider of NHS services becomes aware of the death of a person who is autistic or has a learning disability they are required to report that death via the Learning from Lives and Deaths Platform.

Action from learning: what happens with reviews once they are completed?

Local areas use the findings of their LeDeR reviews to make changes to services locally to help prevent people dying from things which could be treated and prevented. ICBs produce annual reports which describe their local action from learning.

NHS England also looks at the good practice and once a year produces an Action from learning report.

LeDeR reviews are one part of how the NHS is reducing health inequalities for people with a learning disability and autistic people and improving services. We are also doing work on annual health checks, STOMP, and reasonable adjustments through the digital flag.