Changes to LeDer - Learning from Life and Death Reviews of people with a learning disability and autistic people

• From 1 June 2021, the Learning Disability Mortality Review (LeDeR) process is changing.

• In response to stakeholder engagement, the new name for the LeDeR programme will be Learning from Life and Death Reviews 
• There will be a new process for reviewers to follow, including a new computer system (web based platform), and new training for the LeDeR workforce. The new LeDeR website and notification site was launched on 25 May 2021.
• The changes are as a result of a review of the previous process during 2019/20.
• LeDer was originally introduced in 2015 in response to significant ongoing concerns about the likelihood of premature deaths of people with learning disabilities.
• The aim of reviews is to learn from deaths and lead to improvements in services for people with disabilties and/or autistic people, so that avoidable deaths are prevented. There is evidence from both before and during the pandemic that deaths for people with disabilities and autistic people are  higher than they should be and that people die earlier than ought to be the case.

• Integrated Care Systems are now responsible for ensuring reviews take place as opposed to Clinical Commissioning Groups.
• Integrated Care Systems (ICSs) will need to make sure that:
  • LeDeR reviews are completed for their local area
  • there are fewer preventable deaths because people are getting the right care.
  • all the organisations in the ICS learn from LeDeR to make services prevent people dying too soon.
  • there is a stronger emphasis on the delivery of the actions coming out of the reviews and holding local systems to account for delivery, to ensure that there is evidence of service improvement locally.
• The new process will involve an initial review and then a decision will be taken whether to complete a focused review.
• The process should look at the circumstance of a death but also someone’s life before death.
• For the first time deaths of adults who have a diagnosis of autism, but no learning disability will be included in the process. LeDeR reviews will be done for all autistic people over the age of 18 who have been told by a doctor that they are autistic and had this written in their medical record. All reviews of people who are autistic without a learning disability will be focussed reviews initially to develop data and learning. This change will take place during 2021 not from 1 June 2021.
• All BAME people will also get a focussed review because the evidence so far shows that the health inequalities experienced by people from these communities are very significant review and there is also significant under reporting of deaths from these communities.

Anyone can still report someone’s death using the new website. This will be called a ‘notification’.

When an Integrated Care System is notified or finds out that a death of someone with a learning disability or an autistic person dies an initial review should start. First, the reviewer will carry out an initial review.

The reviewer should:

• Talk to the person’s family, or other people who knew them well.
• Talk to the person’s GP or look at their GP records.
• Talk to at least one other person involved in the care of the person who died.

• After the initial review, the reviewer will decide whether a more detailed review is needed. This will be called a focused review.
• Over the next year the workforce will change, and reviewers will work in teams so that no reviewer will work alone, everyone will have the time they need to do reviews and support to do them. This is important and was identified as part of the recommendations for the Oliver McGowan review carried out by Fiona Ritchie.
• Families can say if they think a focused review is needed.
• People with a learning disability and family carers should be part of the groups that decide what actions should be taken from a focused review.

ICSs will need to make sure they have enough reviewers to do reviews. Roles include local contact senior reviewers and reviewers. The senior reviewer role is new. ICS will need to deliver training.

• Councils are key partners in ICS systems that will be responsible for ensuring reviews take place.
• Councils and DASS should familiarise themselves with the new LeDer policy and ensure that relevant staff are also aware and know how to notify the ICS of a death.
• Relevant social care staff should be involved in any training over the coming year.
• Commissioners need to consider the implications for contractual relationships with providers and ensure the broader social care workforce is aware of the requirement to notify.
• Consider any implications for governance arrangements, partnerships and Boards such as Health and Wellbeing Boards, Safeguarding Boards, Autism Partnership Boards, Transforming Care Partnerships.

New policy for LeDeR

The fifth annual University of Bristol LeDeR report considers reviews of deaths notified to LeDeR in the calendar years 2018 to 2020, summarises learning, what is working well and makes recommendations to address inequalities and prevent premature mortality among people with a learning disability.

The NHS Learning disability mortality review (LeDeR): Action from learning report 2020/21 

LeDeR Action from Learning case studies

LeDeR Action from Learning helpful resources document

Minister's Statement about the fifth annual report of the LeDeR programme 10th June 2021 which lists the recommendations including a number of recommendations for local authorities.

Why is the LeDeR policy changing

LeDeR was going to change because LeDeR’s contract with the University of Bristol ends on 31 May 2021. Feedback from the review of the system that took place over the last year found that:

• LeDeR is good at pointing out where health and care services are being unfair and unequal and suggesting how services could be better however, reviewers sometimes do not have enough time to do reviews which can sometimes mean that the reviews they do are not good enough and reviewers often work alone and need better support.
• It was also found that reviewers decide what actions need to happen after a review without knowing about the other work that their organisation is doing, and that LeDeR was not always seen as an important part of what CCGs do.
• It was also sometimes difficult for reviewers to get the information they need to do reviews. Also, families and care providers do not always see a copy of the review when it is finished. In some areas not enough has been done to make changes to services because of what has been learnt.

What are the outcomes hoped for?

• Reduced frequency of deaths that were potentially avoidable.
• Evidence of service improvement actions because of learning from reviews.
• Reduction in the repetition of the recurrent themes found in previous LeDeR reviews.
• Reduced levels of concern and areas for improvement in reviews.

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Find out more about the Care and health improvement programme.