Reviews of deaths

A key part of the LeDeR Programme is to support local areas to review the deaths of people with learning disabilities aged 4 years and over, irrespective of whether the death was expected or not, the cause of death or the place of death. This will enable them to identify good practice and what has worked well, as well as where improvements to the provision of care could be made.

In order to prepare for this, the LeDeR programme has:

  • Held a national consultation about the core information that should be collected about each person with learning disabilities who dies (completed in October 2016). A summary of survey responses received by the end of September 2015 can be found here consultation reponse (PDF, 244kB)
  • Built a secure web-based platform to support the review process, including handling notifications of deaths and supporting the work of local reviewers
  • Obtained the necessary statutory approvals and permissions for the LeDeR Programme
  • Developed and is now piloting a process for local reviews of deaths, including developing protocols, guidance and training materials
  • Learned from the first pilot site in NE and Cumbria about the benefits and challenges of using the LeDeR process to conduct local reviews of deaths of people with learning disabilities, prior to wider roll-out of reviews across England.

A summary document providing guidance about reviewing deaths of people with learning disabilities can be found here Guidance for the conduct of local reviews (PDF, 743kB)

Involving people with learning disabilities

There are now templates available to help reviewers There may be occasions where you would like to be in touch with a significant friend or family member who has learning disabilities themselves. We now have template letters that you can use (in easy read format) and a 7 minute briefing, both of which have been developed in consultation with our Learning Disabilities Advisory group. They can be found here: (insert link) Please feel free to print off the 7 minute briefing and pop it up on the wall as a reminder. The advisory group would encourage you to speak with close friends of someone who has died, so that their views are heard too.

What will local reviews of deaths consist of?

  • An initial review of each death
  • fuller multiagency review of deaths that meet the criteria for this
  • Expert panel scrutiny of the fuller multiagency review of deaths that are subject to priority themed review. Initially, this will be deaths of young people aged 18-24 years and people from Black and Minority Ethnic Communities.
  • An action planning process that picks up on learning and recommendations identified during the review process and translates these into improvements in the delivery of health and social care for people with learning disabilities.

LeDeR process flowchart (PDF, 179kB) 

You can find more detailed information on our website about reviewing a death of a person with learning disabilities.

For reassurance about our permission to share confidential information about people who have died, see the approval letter from the Confidentiality Advisory Group confirming S251 approval and the most recent amendment to the approval letter:

Confidentiality Advisory Group approval (PDF, 144kB)

CAG Amendment Outcome (PDF, 210kB)

Initial Review of a death

For each death there is an initial review. The purpose of this is to provide sufficient information to be able to determine if there are any areas of concern in relation to the care of the person who has died, or if any further learning could be gained from a multiagency review of the death that would contribute to improving practice.

The initial review involves inviting somebody who knew the person well (e.g. a family member, paid carer) to contribute their views about the sequence of events leading to death, limited case note review and the completion of a standard questionnaire. The local reviewer will write a ‘pen portrait’ about the person who has died and complete a timeline of events leading to their death.

At the completion of the initial review the local reviewer will decide if a full multi agency review is required or not. If not, the local reviewer will complete an action plan detailing any learning points or recommendations that should be considered. If there are any areas of concern in relation to the care of the person who has died, or if any further learning could be gained from a multiagency review of the death that would contribute to improving practice, the death will be subject to multiagency review

Multiagency Review of a death

If there are any areas of concern identified at the initial assessment, or if it is felt that a fuller review could lead to improved practice, a multiagency review takes place. Some other deaths will automatically have a multiagency review, irrespective of the initial assessment of the death; these are deaths that are subject to priority themed review.

A multiagency review of a death involves the range of agencies that had been supporting the individual who had died, and considers three phases of care:

a) Initial diagnosis and management of the condition

b) Ongoing management of the condition from initial diagnosis to critical illness

c) Management and care received during final illness

Agencies are requested to contribute to the ‘pen portrait’ and timeline established at the initial assessment, then to return these documents to the local reviewer with a copy of any relevant notes. Once the information has been collated, a multiagency meeting is held to identify and discuss a number of issues:

  • Any good practice that has been identified in relation to the person’s death
  • If any potentially avoidable contributory factors to the death have been identified
  • If, on balance, there were any aspects of care and support that, had they been identified and addressed, may have changed the outcome
  • If there have been any lessons learned as a result of the review of the death
  • If there should be any changes made to local practices as a result of the findings of the review
  • If there are any wider recommendations that should be made.

At the completion of the multiagency review, the local reviewer will complete a multiagency review report and an action plan detailing any learning points or recommendations that should be considered. The action plan will be reviewed to ensure that it is translated into improvements in the delivery of health and social care for people with learning disabilities.

Action planning Process

At the completion of each initial assessment or multiagency review, an action plan will be completed by the local reviewer. This will detail any actions to be taken that may improve the provision of care for people with learning disabilities or others. The purpose of the plan is to clarify the actions to be taken, by whom, and to identify a clear line of responsibility and timeframe for the actions. Action plans will be reviewed by each local area contact, and at regional level, anonymised action plans will be reviewed by the steering group. Recurrent themes and significant issues will be identified and addressed at local and regional levels. 

The LeDeR Programme will monitor completed action plans to ensure that practice improvements take place as a result of the local reviews of deaths of people with learning disabilities.

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