Report: Learning Disabilities Mortality Review Programme (LeDeR) – July 2016 – December 2019

More than a hundred people with learning disabilities received care so poor that it significantly affected their wellbeing or “directly contributed” to their death, a report has found.

Some 7,145 deaths were notified to the Learning Disabilities Mortality Review Programme (LeDeR) between July 2016 and December 2019 in England.

Almost half – 3,060 – were notified in 2019, according to its latest annual report.

The majority were adults, while 516 deaths were of children aged four to 17.

In 122 of the 1,946 cases reviewed in 2019, the care “fell so far short of expected good practice” that it significantly impacted on patients’ wellbeing or directly contributed to their cause of death, the report found.

These predominantly involved significant delays in the diagnosis and treatment and omissions in care.

The LeDeR programme, led by the University of Bristol, was set up in 2015 to help reduce early deaths and health inequalities for people with a learning disability in England.

For deaths notified in 2019, the average age at death was 61 for males and 59 for females – 22 years and 27 years below the average age of death for the general population.

It also found that people from black, Asian and minority ethnic (BAME) groups died disproportionately at younger ages than white British people.

Of those who died in childhood, 43% were from BAME groups, the report found.

And 46% of those who died in childhood had profound and multiple learning disabilities, it said.

People with learning disabilities died from an avoidable medical cause of death twice as frequently as the general population, according to the report.

This involved 44% of all the deaths notified up to December 2019, versus 22% of the general population in 2018.

Avoidable medical causes of death that are treatable were a factor in 34% of the deaths of people with learning disabilities, compared with just 8% of the general population in 2018, the report found.

The most frequently recorded treatable causes of deaths were bacterial pneumonia, epilepsy and ischaemic heart disease.

Just under half (45%) of the cases had been reviewed by December 2019, the report found.

Multi-agency panels, convened if areas of significant concern have been raised, or if any further learning could be gained, reviewed 117 deaths in 2019.

Potentially avoidable contributory factors to a death relating to the person’s care and its provision were identified in 61% of these deaths.

These included the lack of provision of appropriate nutrition, failure to recognise early signs of deterioration and errors or omissions in care.

Three in 10 (31%) of the deaths could potentially have been avoided, they decided, while 49% of the panels concluded it was not potentially avoidable.

Of all the deaths reviewed in 2019, nine people were either a current inpatient at the time they died or had been discharged less than two months prior to their death.

Issues identified in these deaths included a lack of attention to physical health issues, poor care co-ordination, a lack of holistic care provision, and a lack of supervision or observation.

Deaths were reported to a coroner much less frequently (32% of adults) than people in the general population (41% of adults and children).

In a written parliamentary statement, care minister Helen Whately said addressing “the persistent health inequalities faced by people with learning disabilities is a priority for this government”.

She added: “I am clear that we must tackle the issues raised in the LeDeR report to ensure the care that each individual deserves is provided.

“We will consider the report and its recommendations in more detail in the coming weeks, in order to determine the action that must be taken.”

The report is calling for continued focus on BAME deaths, and for the Department of Health and Social Care to work with the Chief Coroner to identify the proportion of deaths of people with learning disabilities referred to a coroner in England and Wales.

It also proposes the introduction of specialist physicians for people with learning disabilities within multi-disciplinary teams.

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