People with learning difficulties were ordered not to resuscitate during the second wave of the pandemic, despite widespread condemnation of the practice last year and an urgent investigation by the watchman.
Mencap said it received reports in January from people with learning disabilities who told them they would not be resuscitated if they became sick with Covid-19.
The Care Quality Commission said in December that inappropriate notices of Not Attempting to Cardiopulmonary Resuscitation (DNACPR) caused potentially preventable deaths last year.
DNACPRs are generally made for people who are too fragile to benefit from CPR, but Mencap said that some appear to have been issued to people simply because they had a learning disability. The CQC is expected to publish a report on the practice within a few weeks.
The revelation comes at a time when activists are increasingly pressing ministers to reconsider the decision not to give priority to vaccination to people with intellectual disabilities. There is growing evidence that even those with mild disabilities are more likely to die if they contract the coronavirus.
Although some people with learning disabilities, such as Down syndrome, were in one of the four groups established by the Joint Vaccination and Immunization Committee (JCVI) for which the government promised that the vaccine would be offered tomorrow, many were classified in lower categories of need and are still waiting.
The NHS figures released last week show that, in the five weeks since the beginning of the third blockade, Covid-19 was responsible for 65% of the deaths of people with learning difficulties. Data from the Office for National Statistics show that the rate for the general population was 39%, although the two statistics are drawn from different measurements.
Younger people with learning disabilities between the ages of 18 and 34 are 30 times more likely to die from Covid than other people of the same age, according to Public Health England.
Edel Harris, chief executive of Mencap, said: “During the pandemic, many people with learning disabilities faced shocking discrimination and obstacles to accessing health, with inappropriate Do Not Try Cardiopulmonary Resuscitation (DNACPR) warnings placed in their files and cuts care support social networks.
“It is unacceptable that within a group of people hit so hard by the pandemic, and that even before Covid died an average of 20 years younger than the general population, many were scared and wondering why they were left out.
“JCVI and the government must act now to help save the lives of some of the most vulnerable people in society, with an urgent priority for all people with learning disabilities to vaccine.”
More than 14 million people have received the first dose of the vaccine so far, and health professionals who have spoken to the Observer said many people with learning disabilities were vaccinated last week. But some are still waiting. A West Midlands woman who has a rare form of Down syndrome told the Observer she still didn’t have a date.
“It’s really frustrating – it was a fight and it shouldn’t have been a fight,” she said. Her condition means she is in category four – people who are clinically extremely vulnerable – but her doctor had no details of her condition on record – a common problem, according to Mencap.
“I had to call them many times,” she said. The practice accepted last week that she needed to be vaccinated, she said, but was still waiting. “For people in a situation similar to mine, they wouldn’t have bothered them as much as I did.”
The lack of insistence is part of the reason why people with learning disabilities are more likely to die from Covid-19 than the rest of the population, according to Dr. Keri-Michèle Lodge, consultant in learning disability psychiatry in Leeds.
“Doctors often don’t understand that someone with a learning disability may not be able to communicate their symptoms,” she said. “Sometimes caregivers are not heard – you can see that something is wrong, but it is often dismissed as part of their behavior.
“People with learning difficulties already receive unfair treatment from health services. Less than two in five people with intellectual disabilities live to 65 years of age. “
An analysis by the Office for National Statistics last week showed that six out of ten Covid deaths were from people with disabilities.
“The biggest factor associated with the increased death rate in his analysis was living in nursing homes or residential settings,” said Lodge. “They prioritized people in nursing homes for vaccination, but that was only for the elderly. They have completely forgotten about people with intellectual disabilities in a very similar environment. I don’t know if the government was taken by surprise or just negligent. “
Professor Martin Green OBE, chief executive of Care England, said: “As the largest representative body of independent adult welfare providers, Care England remains concerned that the government has not given individuals with learning disabilities a higher priority level for the Covid vaccine.
“We urge the government to remove the arbitrary distinction between prioritizing those with severe or profound learning disabilities and those with mild or moderate learning disabilities, and prioritizing all those with learning disabilities in priority group four. People with learning disabilities should not be forgotten at any time ”.
• The title of this article was changed on February 13, 2021 to remove an incorrect reference to “learning difficulties”.