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

• The seventh annual ‘Learning from lives and deaths – People with a learning disability and autistic people’ (LeDeR) report has been published by King’s College London with an easy read version.
• NHS England has also published the fifth annual LeDeR ‘Action from Learning’ report and easy read version, which describes some of the work being undertaken across the country to reduce health inequalities and premature mortality amongst people with a learning disability and autistic people.
• 2022 was the first year LeDeR reviewed deaths of autistic adults without a learning disability. The number of reviews was small, with 36 completed reviews. These reviews are not representative of all autistic adults without a learning disability, and only limited conclusions can be made. Increased reporting is needed to be able to better determine areas for improvement in the care of autistic adults without a learning disability. The NHS intends to run an awareness campaign in 2024.
• Top three avoidable deaths for people with a learning disability: 26.4 per cent of avoidable deaths were linked to cardiovascular conditions, 23.8 per cent to respiratory conditions, (excluding COVID-19), and 15.7 per cent to cancers.
• People from all ethnic minority groups died at a younger age in comparison to people of white ethnicity, when adjusting for sex, region of England, deprivation, place of death, and type of accommodation.
• Whilst deaths from covid reduced there was a spike in notifications of deaths around the July 2022 heatwave peak.

• The full programme name is: Learning from Lives and Deaths – people with a learning disability and autistic people.
• Research has shown that on average, people with a learning disability and autistic people die earlier than the public, and do not receive the same quality of care as people without a learning disability or people who are not autistic.
• 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.
• 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.
• The current policy makes the Integrated Care Board (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.
• 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.

• The 2021 LeDeR annual report reported that 49 percent of the deaths of people with a learning disability were avoidable which compares to 22 per cent 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 per cent 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.

• Since 1 July 2022, ICBs have been responsible for ensuring LeDeR reviews take place.
• 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.

These include:

• 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
• ensuring the local LeDeR annual report is taken to appropriate meetings of the council so that appropriate action can be taken as needed
• ensuring 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

As commissioners, councils also will want 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.
• build into contracts the need to take clients to annual health checks and other clinical appointments into contracts
• ensure that care staff are trained to identify the soft signs of deterioration using a tool such as RESTORE2TM mini  or the anticipatory care calendar

• Kings College London LeDeR report 2022 take home facts infographic
• The NHS Leder website
• You can read more of our briefings about autistic people and people with a learning disability.
• LeDeR resource bank