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The fact people with learning disabilities are dying from Covid-19 at a much higher rate than the general population is a “shocking indictment of society”, a leading nurse has warned.
Jim Blair (pictured above) is now calling for action to better protect this group including the creation of a new taskforce involving nurses and priority access to Covid-19 vaccinations.
“The reality is that the health inequalities experienced by people with learning disabilities has just been exposed even more in relation to Covid”
He spoke to Nursing Times after a government review revealed that people with learning disabilities were up to six times more likely to die from Covid-19 in the first wave of the pandemic in England than the general population.
The findings from Public Health England (PHE) report were “shocking” but not surprising, said Mr Blair, an independent nurse consultant in learning disabilities who is known nationally for his advocacy work.
“Many people were saying at the beginning that more needed to be done to make sure that people with learning disabilities were supported and protected and engaged and understood what was happening,” he said.
Even before the pandemic, people with learning disabilities on average died at a much earlier age than those without and one of the leading causes of death was respiratory problems.
Mr Blair said people with learning disabilities should have been treated as a “very high-risk” Covid-19 group from the outset of the crisis.
“The reality is that the health inequalities experienced by people with learning disabilities has just been exposed even more in relation to Covid,” he told Nursing Times.
“It’s just a shocking indictment of society that people with learning disabilities are many, many more times more likely to die than people without a learning disability in terms of Covid but other things we already know of as well.
“But we knew they were much more likely to be at risk [from Covid-19] because of aspiration, pneumonia and other respiratory risks, which have been identified for many years.”
The PHE study found 451 per 100,000 people registered as having a learning disability died with Covid-19 between 21 March and 5 June – a death rate 4.1 times higher than the general population after adjusting for other factors such as age and sex.
When taking into account unreported deaths, researchers estimated the real rate may have been as high as 692 per 100,000, 6.3 times higher than the general population.
The disparity was even larger when focusing on younger age groups. Among those aged 18-34, for example, people with learning disabilities were 30 times more likely to die from Covid-19.
Most deaths (82%) of people with learning disabilities from Covid-19 happened in hospital.
Looking ahead, Mr Blair said it was key that information about Covid-19 was shared in a way that was accessible to all people with learning disabilities, and that routine health checks continued throughout the ongoing pandemic.
Regular Covid-19 testing was also needed for people with learning disabilities including those in care homes, hospitals, community settings, and those living in their own homes, said Mr Blair.
“There is regular testing of staff and residents in care homes, and testing has also been rolled out to high risk supported living settings”
He said in light of the new findings, people with learning disabilities also needed to be a top priority for Covid-19 vaccinations, if and when one becomes available.
Efforts also needed to be made to ensure people with learning disabilities were vaccinated against influenza this winter, he added.
“I think those bits are really important because we know that people are at higher risk of respiratory problems compared to the general population without a learning disability,” he said.
More generally, Mr Blair called for a Covid-19 taskforce to be put in place to focus on the targeted changes needed to protect people with learning disabilities during the coronavirus pandemic going forwards.
“We can target it, we can focus it, but we need a really quick response,” he said.
“So, I would like to see a learning disability Covid taskforce set up that involves experienced learning disabilities nurses alongside doctors, other nurses, people with learning disabilities and family members, to really look at how can we implement these changes and make sure they actually occur and then that will save lives.”
A Department of Health and Social Care spokesperson said actions to protect people with learning disabilities from Covid-19 were set out in its Adult Social Care Winter Plan.
“There is regular testing of staff and residents in care homes, and testing has also been rolled out to high risk supported living settings,” they added.
“We’re also offering free personal protective equipment, and the Joint Committee on Vaccines and Immunisation (JCVI) has proposed those living and working in care homes should be top of the list for vaccination.”
Under the draft Covid-19 vaccine priority list produced by the JCVI and last updated in September 2020, prioritisation is currently based mostly on age.
Top of the list are “older adults’ resident in a care home and care home workers”, followed by “all those 80 years of age and over and health and social care workers”, and then people aged 75-65.
People under the age of 65 considered to be a “high” or “moderate” risk from Covid-19 are next in the queue but the groups that fall into these categories have not yet been defined.