Learning from Life and Death Reviews of people with a learning disability and autistic people

August 2022 update briefing

• Research has shown that on average, people with a learning disability and autistic people die earlier than the general public, and do not receive the same quality of care as people without a learning disability or people who are not autistic.
• Local care and health systems can change this. LeDeR reviews look at the lives and deaths of people with a learning disability and autistic people to see where Integrated Care Boards (ICBs) can find areas of learning, opportunities to improve, and examples of excellent practice. This information is then used to improve services for people with a learning disability and autistic people.
• In June 2021 NHS England implemented a new LeDeR policy and process for reviewers to follow, including a new web-based platform, and new training for the LeDeR workforce.
• Since January 2022 LeDeR has expanded and now reviews the lives and deaths of autistic people aged 18 and over.
• The full programme name is: Learning from Lives and Deaths – people with a learning disability and autistic people.
• The new policy makes the ICB responsible for LeDeR reviews and any action needed coming out of those reviews. The local ICB will be required to report every quarter on progress.
• LeDeR reviews look at health and social care records to learn from them and to lead to improvements in services for people with a learning disability and autistic people.
• Access to social care records and the involvement of social care staff is an important and integral part of the LeDeR process and is central to completing good, person-centred reviews. 
• In June 2021, the Minister for Care sent a letter to all Directors of Public Health, Directors of Adult Social Care and Directors of Children’s services seeking their ongoing support, including access to social care records.

Local authorities can support the LeDeR review process by allowing access to social care records that authorities are responsible for, and cooperating to enable reviews to be completed in good time. Local authorities can also help by building into social care provider contracts a requirement to cooperate with the LeDeR process 

• Research from Premature Mortality in Autism Spectrum Disorder published by Cambridge University indicates that people who are autistic may die up to 16 years younger than the general population.
• Autism is a lifelong condition with current estimates being that ‘an estimated 700,000 people and approximately one percent of the population’ are autistic (DHSC. All Ages Autism Strategy 2021). Therefore, approximately one in a hundred of a council area’s population will be autistic. 
• Deaths of adults who have a diagnosis of autism, but no learning disability, are now included in the LeDeR programme and will be reported on for the first time in the 2022 annual report (to be published in 2023). LeDeR reviews will be carried out for all autistic adults with a clinical diagnosis of autism recorded in their medical record.

• The 2021 LeDeR annual report reported that 49 percent of the deaths of people with a learning disability were avoidable which compares to 22% for the general population.
• In 2021 after COVID 19 is taken into account, the leading causes of death for people with a learning disability were diseases of the circulatory system and the respiratory system followed by cancers.
• 49 percent of all deaths were avoidable with people from black and minority ethnic communities having more avoidable deaths.
• The place of death also remained a significant predictor of avoidable death, with people not in their own home or in hospital more likely to die prematurely. 
• Annual health checks are a protective factor from avoidable death, as are the correct use of hospital passports and effective multi-disciplinary team working.
• A key issue identified in the annual report was care staff not being trained to identify when the health of a person they were caring for was deteriorating, leading to delays in accessing health services.

• From July 1 2022, ICBs are responsible for ensuring reviews take place. Previously this responsibility lay with Clinical Commissioning Groups (CCGs).
• LeDeR governance groups in ICBs should include social care and public health.
• ICBs will need to ensure that there is a stronger emphasis on the delivery of the actions coming out of reviews, holding local providers to account for the actions needed to deliver service improvement locally. 
• ICBs are expected to measure the impact of their work to demonstrate improvements in services and demonstrate there are fewer preventable deaths because people are getting the right care.

• playing their part in ensuring LeDeR reviews are completed for their local area in a timely manner by properly trained reviewers working in teams
• working as part of the ICB to ensure effective governance groups are in place that look at reviews and agree actions locally to improve services because of the findings 
• working with the named executive lead with responsibility for LeDeR across the ICS and the named lead for ethnic minority engagement on LeDeR
• taking the local LeDeR annual report is taken to appropriate meetings of the council so that appropriate action can be taken as needed
• and that the implications of the inclusion of autistic people in LeDeR is considered for governance arrangements, partnerships, and boards such as Health and Wellbeing Boards, Safeguarding Boards, Autism Partnership Boards and Transforming Care Partnerships
• council commissioners need to consider the implications for contractual relationships with providers so that providers ensure that the broader social care workforce is aware of the LeDeR programme, how to notify a death, and the need to share care records to support a review
• also, when commissioning services, build the need to take clients to annual health checks and other clinical appointments into contracts
• along with ensuring that care staff are trained to identify the soft signs of deterioration using a tool such as RESTORE2TM mini  or the anticipatory care calendar