The LeDeR programme involves many different organisations

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

NHS England

NHS England makes sure that the LeDeR reviews are helping to improve the quality of health and social care for people with a learning disability.

We do this by supporting local agencies and health professionals to complete LeDeR reviews and use the learning to change the way they provide services in their local area.  We also help local systems to learn from one another so that we can spread learning and good practice across the country.  We commission Kings College London and its partners, University of Central Lancashire and Kingston St George’s Universities to analyse all of 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 there is a local Integrated Care Board (ICB) who 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.

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

ICBshave to publish an annual report about what they have done to change services as a result of the reviews they have completed and a three 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 the  develop plans and make sure that the things we 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 will  have a minority ethnic 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, families and carers

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

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

People with a learning disability 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 can ensure that they support people to live happy and healthier lives by ensuring that reasonable adjustments are made where they are needed.  In addition, those in primary care ensure that  annual health checks and medication reviews of people with a learning disability, autism or both (STOMP) reviews happen and health action plans are acted upon. Health and care professionals can also support LeDeR by taking the learning from reviews and making the improvements in their services for people with a learning disability and autistic people that have been identified.