Covid deaths for people with learning disability in England six times average

Campaigners say report on first wave shows government failed to protect the most vulnerable

An emergency ambulance outside the Northern General hospital in Sheffield
The higher death rate is likely to reflect underlying health problems, greater vulnerability to respiratory infections and difficulties following Covid rules. Photograph: Christopher Thomond/The Guardian

People with learning disabilities are dying of coronavirus at more than six times the rate of the general population, according to “deeply troubling” figures that have prompted a government review.

A report from Public Health England (PHE) found that 451 in every 100,000 people registered as having learning disabilities died after contracting Covid-19 in the first wave of the pandemic, when the figures were adjusted for age and sex.

Because not all Covid deaths among people with learning disabilities are registered as such, the true figure is likely to be 692 in every 100,000, or 6.3 times the UK average, the report estimated.

Campaigners said the figures showed the government had failed to protect the most vulnerable.

The report found that Covid deaths among those with learning disabilities were also more widely spread across age groups, with far greater mortality rates among younger adults.

Those aged 18-34 were 30 times more likely to die with the virus than their counterparts in the general population.

The higher death rate is likely to reflect the greater prevalence of health problems such as diabetes and obesity among those with learning disabilities, the report said. It also noted that some learning disabilities, such as Down’s syndrome, can make people more vulnerable to respiratory infections.

People with learning disabilities are also likely to have difficulty recognising symptoms and following advice on testing, social distancing and infection prevention, the report said. It may also be harder for those caring for them to recognise symptoms if these cannot be communicated, it added.

The care minister, Helen Whately, said she had asked the Scientific Advisory Group for Emergencies (Sage) to review the findings and advise on further action.

Dan Scorer, the head of policy at the learning disability charity Mencap, said the review “must look closely at why so many people with a learning disability died from Covid-19 and what should have been done differently”.

He 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.”

Prof John Newton, PHE’s 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.”

The shadow care minister, Barbara Keeley, called for immediate action to address the problem. In a letter to the health secretary, Matt Hancock, she said: “People with learning disabilities deserve better than this, they deserve action to protect them from increased risk this reports shows they have of catching Covid-19 and dying from it.”

The study examined data from the Learning Disabilities Mortality Review (LeDeR) at the University of Bristol and NHS England’s Covid-19 patient notification system (CNPS), which records deaths in hospital settings.

LeDeR received 623 reports of deaths among people with learning disabilities that were definitely or possibly related to Covid-19 between the beginning of February and 5 June. This suggests a national total of 956 deaths after accounting for under-reporting.

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

‘Swept aside’

Nigel Marriott
Pinterest
Nigel Marriott was denied treatment on a ventilator before he died of Covid-19 in April, his brother says.

Kevin Marriott, 63, a sports journalist from St Austell in Cornwall, is convinced the NHS discriminated against his brain-damaged brother Nigel before he died of Covid on 8 April.

“People with learning disabilities seem to be be swept aside,” he said. “He wasn’t given the sort of treatment we would have expected.”

Nigel, who was 60, was living semi-independently in supported accommodation near his brother. At the start of the first lockdown he fell ill in the Midlands, where he was staying with their sister.

Doctors initially failed to diagnose Covid and gave him antibiotics for a suspected stomach bug instead. When he was admitted to hospital, Kevin said he was denied treatment on a ventilator.

“I got the impression that normal patients would have gone on to a ventilator, but he was just allowed to die. I do think the health service failed him,” he said.

“We should have had an explanation from the doctor on why he couldn’t have any more treatment. We were devastated we couldn’t be allowed to travel up to be with him after supporting Nigel for all his life. I didn’t even get to the talk to the doctor. I think there should be closer involvement of family members.”