The LeDeR programme has produced an annual report since 2016, presenting data from deaths notified, and completed reviews of deaths.

Copies of each of the annual reports can be found here.

Responses from NHS England about actions taken as a result of learning from reviews of deaths are summarised in NHS England Action from Learning reports.

Data from 2016 and 2017 is incomplete as it was collected while the programme was becoming established. Since 2018, there have been some early indicators of improvements in the care of people with learning disabilities:

• The median age at death has increased by one year for deaths occurring between 2018 and 2020.
• There is an encouraging picture of an overall reduction in the proportion of preventable, treatable and overall avoidable medical causes of death of adults and children with learning disabilities between 2018 and 2020 (although it remains considerably greater than for people in the general population).
• The proportion of reviewers providing examples of best practice has increased between 2018 and 2020.
• The proportion of reviewers noting problematic aspects of care decreased slightly between 2018 and 2020.
• There has been a steady increase between 2018 and 2020 in the proportion of reviewers who felt that a person’s care met or exceeded good practice.

However, there are also indications that such improvements are not felt across all aspects of service provision or groups of people with learning disabilities:

• There are significant inequalities in the experiences of people from minority ethnic groups compared to white British people:
• The COVID-19 pandemic highlighted the impact of health inequalities and deficiencies in the provision of care in relation to people with learning disabilities, with rates of deaths of people with learning disabilities greater than those of the general population.
• There has been little reduction in the proportion of deaths from bacterial pneumonia or aspiration pneumonia between 2018 and 2019[1].
• A small number of Medical Certificates of Cause of Death still report conditions associated with learning disabilities as the only cause of death.
• The proportion of adults with a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision at the time of their death has risen slightly between 2018 and 2020. Of those with a DNACPR decision, the proportion that were known by the reviewer to be correctly completed and followed decreased between 2018 to 2020.
• The proportion of deaths of adults and children with learning disabilities known to have been reported to a coroner reduced between 2018 and 2019[2] and remains well below the proportion in the general population.
• Families raised an increased proportion of concerns about deaths from 2018-2020.
• In 2020, reviewers of 42% of deaths felt that the person’s care had not met good practice standards.
• Several variables were significantly associated with greater likelihood of dying aged 18-49 years: being of Asian/Asian British ethnicity, mixed/multiple ethnicities, or of Black/African/Caribbean/ Black British ethnicity; having severe or profound and multiple learning disabilities; being subject to mental health or criminal justice restrictions in the five years prior to death; and not having an annual health check in the year prior to death.

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[1] The high proportion of deaths from COVID-19 in 2020 makes direct comparison between this and previous years difficult.

[2] The very low proportion of death from COVID-19 that were reported to the coroner makes comparison between this and previous years difficult.