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.

LeDeR

LeDeR focuses on learning from the lives and deaths of people with a learning disability and autistic people. It is about local service improvement which enables local systems to better understand why people are dying early and what we can do to change services locally and nationally to improve the health of people with a learning disability and autistic people, and reduce health inequalities. By finding out more about why people have died we can understand what needs to be changed to make a difference to people’s lives.

What is a LeDeR review?

Integrated care systems (ICSs) of health and care providers complete LeDeR reviews looking at the health and social care received by people with a learning disability and autistic people who have died at age 18 and above, using a standardised review process. This enables the local system to identify good practice and what has worked well, as well as where improvements in the provision of care could be made. Local actions are taken to address the issues identified in reviews.

A LeDeR review is not a mortality review. It does not restrict itself to the last episode of care before the person’s death. Instead, it looks at key episodes of health and social care the person received that may have been relevant to their overall health outcomes. LeDeR reviews, however, do take account of any mortality review that may have taken place following a person’s death.

LeDeR reviews are not investigations or part of a complaints process, and any serious concerns about the quality of care provided should be raised with the provider of that service directly or with the Care Quality Commission via their online system.

Every person with a learning disability whose death is notified to the online LeDeR system will have an initial review of the health and social care they received prior to their death. Using their professional judgement and the evidence available to them, the reviewer will determine where a focused review is required. The person’s family has the right to request a focused review. Focused reviews will also always be completed for every person from an ethnic minority background and everyone who has a diagnosis of autism who is notified to the system.

To view  the most recent Action from learning report, where you can find some examples of how integrated care boards have changed their local services to meet the needs of people with a learning disability, please visit the LeDeR website’s resources webpage.