People with learning disabilities up to six times more likely to die with Covid, study finds

By Jemma Crew, Reporter13th November 2020News EnglandAdult Care, Coronavirus / Covid-19, Learning Disabilities, News England, Vulnerable Adults

People with learning disabilities in England were up to six times more likely to die with coronavirus during the first wave of the outbreak, a study has found.

They were between 4.1 and 6.3 times more likely to die after contracting Covid-19 than the general population, Public Health England (PHE) said.

Younger adults with learning disabilities had “far greater” mortality rates, thought to be due in part to them being more likely to have other health problems like diabetes and obesity.

Those aged 18-34 were 30 times more likely to die with the virus than adults of that age group in the general population.

Care minister Helen Whately said she is asking the Scientific Advisory Group for Emergencies to review the findings and advise on further action.

The study examined data from the English Learning Disabilities Mortality Review (LeDeR) and NHS England’s Covid-19 Patient Notification System (CNPS), which records deaths in hospital settings.

LeDeR received 623 reports of deaths, which were definitely or possibly Covid-19-related, among people with learning disabilities between the beginning of February and June 5.

This suggests an estimated national total of 956 deaths, after accounting for under-reporting.

CPNS recorded 490 deaths of adults with learning disabilities with Covid-19 up to June 5 – again thought to be an underestimate.

Adjusting for age and sex, the study found 451 per 100,000 people registered as having a learning disability died with Covid-19 between March 21 and June 5.

This is a death rate 4.1 times higher than the general population.

Researchers estimate the real rate may have been as high as 692 per 100,000 – 6.3 times higher than the general population – because not all deaths are registered on these databases.

The virus accounted for 54% of deaths of adults with learning disabilities in residential care in the review period, and 53% of the deaths of those receiving community care.

The number of deaths of white people with learning disabilities from all causes in 2020 was 1.9 times the number in the two previous years, the report said.

For Asian or Asian British groups it was 4.5 times and for black or black British groups it was 4.4 times.

Professor John Newton, PHE director of health improvement, said: “It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again.

“There are now regular tests in care homes to make sure cases of coronavirus can be quickly identified and isolated, even if people do not recognise the symptoms themselves.

“But with cases developing across the country, it is essential to practice rigorous infection control if you are in contact with someone with a learning disability, whether or not they live in a care home.”

People with learning disabilities are likely to have difficulty recognising symptoms, and following advice on testing, social distancing and infection prevention, the report said.

It may be harder for those caring for them to recognise symptoms if these cannot be communicated, it added.

Dan Scorer (pictured), head of policy at the learning disability charity Mencap, said: “The Government has failed to protect some of our most vulnerable citizens.

“Decades of underinvestment in social care has left most people with a learning disability with no support to understand ever-changing guidance on staying safe and accessing testing.

“This – combined with the closure of the NHS for all but the most urgent care – has clearly had a devastating impact on people with a learning disability, and exacerbated already shocking levels of premature death and health inequalities.

“The forthcoming inquiry into the handling of the pandemic must look closely at why so many people with a learning disability died from Covid-19 and what should have been done differently.”

Ms Whately said: “I know how difficult this pandemic has been for people with a learning disability and those who care for them.

“A third of those with learning disabilities who sadly died were living in residential care. There is now regular testing of staff and residents in care homes, and testing has also been rolled out to supported living settings in high risk areas.

“We’re also offering free PPE (personal protective equipment), and the joint committee on vaccines and immunisation has proposed those living and working in care homes should be top of the list for vaccination.”