Learning from lives and deaths – people with a learning disability and autistic people (LeDeR)

LeDeR is a national service improvement programme commissioned by NHS England where the death of every adult with a learning disability and autistic people is reviewed.

LeDeR reviews the deaths of people with learning disabilities and autistic people in Bristol, North Somerset and South Gloucestershire.  Everyone with a learning disability and/or diagnosis of autism aged 18 and over is eligible for a LeDeR review.

In Bristol, North Somerset and South Gloucestershire, recommendations following LeDeR reviews help us to make local improvements in the quality of health and social care for these groups of people. This may be by highlighting and sharing good practice or by demonstrating where improvements can be made to the care provided.

The aims of the programme are:

  • To support improvements in the quality of health and social care service delivery for people with learning disabilities and autistic people.
  • To help reduce premature mortality and address health inequalities for people with learning disabilities and autistic people.

The importance of LeDeR

National reports and research show that people with a learning disability and autistic people sometimes die earlier than they should.

In Bristol, North Somerset and South Gloucestershire, data and LeDeR review findings are monitored regularly and are drawn together in a local LeDeR annual report, which is published on our website.

Who is responsible for LeDeR?

Responsibility for ensuring the delivery of LeDeR reviews currently lies with local integrated care systems (ICSs).  Integrated Care Boards (ICBs) are responsible for ensuring that LeDeR reviews are completed for their local area.

Actions following reviews must be implemented to improve the quality of services for people with a learning disability and autistic people to reduce health inequities and premature mortality.

Contact the Bristol, North Somerset and South Gloucestershire LeDeR team by email bnssg.leder@nhs.net

Notifying to LeDeR

Anyone can notify the LeDeR Programme of a death concerning someone who is 18 years of age with a learning disability and autistic people.

Report the death of someone with a learning disability or an autistic person - LeDeR NHS

What a LeDeR review involves

NHS Bristol, North Somerset and South Gloucestershire ICB has a dedicated team to carry out reviews and support service improvements. A review is carried out on everyone aged over 18 years with a learning disability and autistic people whether the death was expected or not.

Our reviewers talk to family, Next of Kin and other key people about the person’s life and the circumstances leading to the person’s death.

Reviewers have access to medical and care records so they have as much information as possible about the person’s health and care needs. They write a review using a template that is on a secure online LeDeR website.

In Bristol, North Somerset and South Gloucestershire, once the review is completed it is checked by a local panel of learning disability and autistic specialists. As a group we discuss the themes of good practice and if there is any learning.  It is these themes that become systemwide service improvements.

At times there may be a statutory investigation when someone has died, when this happens the LeDeR review is put on hold until the investigation is complete. LeDeR is not an investigation but a review of the health and social care a person received during their life.

Anonymised data from all LeDeR reviews in England are shared with NHS England to provide an annual LeDeR report.

Annual LeDeR Report - King's College London

Family and Next of Kin involvement

Involving family and Next of Kin in LeDeR reviews is essential.  We want to hear about the person who has died and hear about their life. We also want to listen to any thoughts about the services that were used by the person, regardless of whether the services worked well or if improvements could be made.

Families are offered an anonymised copy of the review once it has been completed. We prefer to send reviews out in the post.

LeDeR is a review, not an investigation. If you have queries the Bristol, North Somerset and South Gloucestershire LeDeR team can signpost you to the correct organisation to support your concern.

Where to find more information about LeDeR

Visit the NHS England LeDeR website LeDeR Policy Framework

Contact the Bristol, North Somerset and South Gloucestershire LeDeR team by email at bnssg.leder@nhs.net
Address: NHS Bristol, North Somerset and South Gloucestershire ICB, Floor 2, North Wing, 100 Temple Street, Bristol, BS1 6AG

Annual health checks for people with learning disabilities

Resources are available to support health professionals with annual health checks for people with learning disabilities. These resources are most relevant to GPs, practice nurses and primary care administrators.

Resources for Learning Disability Annual Health Checks and Health Action Plans - Remedy

The Oliver McGowan Mandatory Training on Learning Disability and Autism

We have widely circulated information about the launch of the Oliver McGowan Training which is now available. We are promoting this with all our providers and require them to make arrangements for staff to attend.

The Oliver McGowan Mandatory Training on Learning Disability and Autism - Health Education England

LeDeR Annual Reports