LeDeR
Learning from lives and deaths – People with a learning disability and autistic people (LeDeR)
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 – people with a learning disability and autistic people (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?
Integrated care systems are responsible for ensuring that LeDeR reviews are completed based on the health and social care received by people with a learning disability and autistic people (aged eighteen years and over) who have died, using the standardised review process. This enables the integrated care systems 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. Recurrent themes and significant issues are identified and addressed at a more systematic level, regionally and nationally.
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 LeDeR 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 a minority ethnic background.
Reporting the death of a person with a learning disability
Anyone can notify a death to LeDeR 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.
Learning from Lives and Deaths of People with a Learning Disability and People with Autism.
Please find some information for you below. The first is a 1.03 minute video outlining what LeDeR is:
The second 5.14 minute video shows you what different areas of the UK are doing to support the lives of people with a learning disability and/or autism. I have also included links discussed within the video, please see below:
SUDEP: Action Website
There are at least three epilepsy-related deaths a day in the UK.
SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy.
Their services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register.
SUDEP Action | Making every epilepsy death count
20231019_LeDeR_action_from_learning_report_FINAL.pdf