Learning from lives and deaths – people with a learning disability and autistic people (LeDeR) is a local service improvement initiative. It enables local systems to better understand why people are dying early and what we can do to change services locally and nationally. The goal is 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.
LeDeR reviews
Integrated care systems complete LeDeR reviews looking at the health and social care received by adults with a learning disability and autistic adults who have died, 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. This helps reduce inequalities in care for people with a learning disability and autistic people. It reduces the number of people dying sooner than they should.
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 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 (CQC) 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 be completed for every person from an ethnic minority background and everyone who has a diagnosis of autism who is notified to the system.
How LeDeR reviews fit with other reviews of deaths
There are several different review processes for adults who die. For example:
- safeguarding adults’ review
- review of deaths of people in hospitals
ICBs will work to try to avoid unnecessary duplication. Reviewers will make it clear to families where and how the LeDeR process links with other reviews or investigations.