Essex report into Covid deaths and residents with learning disabilities

A medical person with a Littmann stethoscope

A West Essex CCG report has looked at deaths in Essex in people with learning disabilities - Credit: PA Wire/PA Images

Nearly half the deaths of people in Essex with learning disabilities last year were related to Covid-19, an NHS review programme has found.

The Learning Disability Mortality Review programme, an NHS initiative, also found that learning disabilities had been listed as a cause of death on death certificates.

The report said that 185 people with learning disabilities died across the county between 2020 and 2021, of which 81 were from Covid.

But the findings, included in a West Essex CCG report, also said this 44% rate dropped to 33% when only considering cases where Covid was the direct cause of death.

A section of the report read: “Nearly half the deaths of people with LD were related to Covid.

“Pneumonia (linked to frailty or aspiration), cancer and sepsis are also common direct causes of death.”

West Essex CCG did not respond to a request for comment in time for publication.

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According to the report, 185 deaths in 2020-2021 is an increase compared with just under 100 in the last two years.

People with learning disabilities are dying around 20 years younger than other people, the report continues.

In January 2021, the rate of deaths due to Covid in people with learning disabilities peaked at 73%.

Of the deaths, 63% were in hospital and 27% were in their usual place of residence, according to the report.

The Learning Disability Mortality Review programme has set the following categories as its areas of focus going into the new year: vulnerable people in the community, lack of diagnosis, improving coordination and public health issues.

Concerns raised

Health chiefs have raised concerns that conditions such as cerebral palsy and Down’s Syndrome are being recorded as causes of death.

A report by the NHS Learning Disability Mortality Review programme raised concerns that the conditions, which cannot be direct causes of death, had been listed on death certificates of people in Essex by medics.

The findings, included in a West Essex CCG report, also found a small number of decisions to not resuscitate had “learning disability”, “wheelchair user” or “Down’s Syndrome” given as the reason.

But the report continues to say these were “turned around” by learning disability liaison nurses, who then raised safeguards.

A section read: “There is still much confusion around how a DNAR fits with advanced care planning.

“The majority are made when the person is in hospital very close to death.”

West Essex CCG did not respond to comment when approached.

The conditions were found listed on part 1a of the death certificates, according to the report.

This is the part of a death certificate which should document the disease or condition that led directly to the death.

LeDeR has recommended the way deaths are recorded for people with cerebral palsy, and Down’s Syndrome be reviewed.

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