Healthcare of people with a learning disability has worsened in the past year after seeing signs of improvement in previous years, according to the annual report from the Learning Disability Mortality Review (LeDeR).

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. The report also shows there is an encouraging picture of an overall reduction in the proportion of preventable, treatable and overall avoidable medical causes of death of people with learning disabilities from 2018 to 2020. 

However, there are also indications that such improvements are not felt across all aspects of service provision. People with a learning disability are still dying 25 years younger than the general population, and are three times more likely to die avoidably. 

In addition, the proportion of deaths of people with learning disabilities from Covid-19 notified to the LeDeR programme was greater than the proportion of deaths from Covid-19 in the general population.

What is LeDer?

LeDeR was set up in 2017 to examine the various causes of death in people with a learning disability so as to attempt to improve their healthcare needs and reduce health inequalities.

This year’s report focuses on findings from completed reviews of the deaths of people with learning disabilities that occurred in the calendar years 2018, 2019 and 2020, identifying any trends that have occurred over time, and considering implications for service improvement.

The researchers acknowledged that 2020 was an ‘unusual’ year because of the Covid-19 pandemic and for this reason, comparisons of 2020 data with those of previous years should be interpreted with this caution in mind.

Health inequality and learning disability

Health outcomes for people with learning disabilities are still being impacted by inequalities and deficiencies in the provision of care. Key things highlighted in the annual report include:

  • The disproportionate impact of health inequalities on people from minority ethnic groups
  • Problematic or unsafe hospital discharges
  • Diagnostic over-shadowing when diagnosing illness and considering options for the escalation of care
  • Lack of consideration of the need for ‘reasonable adjustments’ to existing policies and processes for people with learning disabilities
  • Lack of application of the Mental Capacity Act
  • The vital importance of specialist learning disability liaison nurses in hospitals, yet the patchy availability of this provision.

Minority ethnic groups and learning disability

There are indications of significant inequalities in the experiences of people from minority ethnic groups compared to white British people, although the small numbers in some groups mean that the data must be interpreted cautiously. The report found:

  • Fewer deaths of people from minority ethnic groups were reported to the LeDeR programme than would be expected
  • 32% of deaths of people from mixed/multiple ethnicities were of 4–17- year-olds, compared to 31% of people from Asian/Asian British ethnicity; 22% of Black/African/Caribbean/Black British ethnicity; 19% of people of ‘other’ ethnic groups and 4% of white British
  • Adults of Asian/Asian British ethnicity had an eight times greater likelihood of dying in early adulthood (aged 18-49 years) than people of white British ethnicity. People from Black/African/ Caribbean/Black British ethnic groups, and of mixed/multiple ethnicities, had a likelihood over four times greater
  • Adults and children from Black/African/ Caribbean/Black British ethnic groups, and people from mixed/multiple ethnicities had a higher proportion of treatable medical causes of death than other ethnic groups.

DNACPR decisions and learning disability

The proportion of adults with a 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 from 2018 to 2020.

The proportion of adults with a DNACPR decision at the time of their death was 71% in 2018, 70% in 2019 and 73% in 2020.

Of those with a DNACPR decision, the proportion that were known by the reviewer to be correctly completed and followed decreased from 76% in 2018, to 73% in 2019 and 71% in 2020.

Dan Scorer, Head of Policy at Mencap, said the report once again highlights devastating and long-standing inequalities including those faced by people from minority ethnic communities.

He added: “It's vital that the Government and the NHS urgently address the recommendations set out in today's report, and the independent Covid inquiry must also investigate the causes behind the high death rate of people with a learning disability during the pandemic - and set out actions to create real change.”

What happens next?

There has been a steady increase in the proportion of reviewers who felt that a person’s care met or exceeded good practice from 2018 to 2020. In 2018, the proportion of reviewers reporting this was 48%; it had risen to 58% in 2020.

Although the authors said this is encouraging, it still means that in 2020, 42% of reviewers felt that the person’s care had not met good practice standards.

The report highlighted areas of best practice and also recommendations on how care could be improved, which will be further discussed in Learning Disability Today this week.