People with learning disabilities have faced “discriminatory practices” through the pandemic, an expert has warned, as data suggested they died from Covid at six times the rate of the general population during the first wave.
Chris Hatton, professor of social care at Manchester Metropolitan University, said reviews into the deaths of people with learning disabilities from Covid-19 had identified “systemic failure from services designed to help them”.
His comments concerned the findings of a report by the Learning Disabilities Mortality Review (LeDeR), which reviewed the circumstances leading to death for a sample of 206 adults with learning disabilities, 79% of whom died from Covid-19 from 2 March to 9 June.
Misuse of do not attempt resuscitation orders
Of those who died from Covid-19, 82% had a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision. While reviewers felt that the majority of these (72%) were correctly completed and followed, several noted that frailty or learning disabilities were, inappropriately, given as a rationale for a DNACPR decision. Also, several reviewers noted that the decision-making process for DNACPR decisions had not adhered to the Mental Capacity Act (MCA), with no references to capacity assessments having been carried out in a number of cases.
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In 28% of deaths from Covid-19, reviews found people had problems obtaining healthcare, including NHS111 calls not being returned or being returned later than scheduled and problems accessing coronavirus tests, while, in a fifth of cases, reasonable adjustments not being made when required.
Hatton said: “The analysis of LeDeR reviews reveal people with learning disabilities who died of Covid-19 experienced systemic failure from services designed to help them, including failures of infection control, PPE, testing, identifying when people’s health was deteriorating, and a range of discriminatory practices including Do Not Resuscitate notices being used on grounds of ‘frailty’ or ‘learning disabilities’.”
Death rate six times the average
This study came in the wake of a report from Public Health England, which found that – based on cases referred to LeDeR and after adjusting for differences in age and sex, and likely underreporting – people with learning disabilities died from Covid at 6.3 times the rate of the general population, from 21 March to 5 June.
Both the LeDeR and PHE reports showed that people with learning disabilities were dying from Covid at a much younger age than the general population, reflecting many previous reports showing premature mortality among the group. Those with learning disabilities aged 18-34 were 30 times more likely to die from the virus than the general population in that age bracket, while the age band with the largest number of deaths for people with learning disabilities was 55 to 64 years compared with over 75 for the general population.
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Based on crude calculations from figures reported by the Care Quality Commission and LeDeR, PHE said death rates among people with learning disabilities in residential care from Covid-19 were 2.3 times higher than those for people with learning disabilities more generally.
However, it found that care homes supporting adults with learning disabilities were less likely than other care homes to have had Covid-19 outbreaks, which it attributed to them having far fewer residents on average.
“The small size of the residential homes in which they live is likely to have been an important factor in avoiding a much worse outcome,” it added.
Need to examine systemic factors
As well as the risks associated receiving social care, including at home, the report said other risk factors for people with learning disabilities included lack of access to healthcare, higher rates of Covid-19 risk factors such as diabetes and obesity and difficulties following government advice about self-isolation, social distancing and infection prevention and control.
However, Hatton said much bigger systemic changes focusing on the “causes of the causes” were essential.
“For most people with learning disabilities, as for most people generally, the health conditions putting people at higher risk are rooted in social and economic inequality and discrimination,” he said.
BASW England’s national director, Maris Stratulis, agreed that the “appalling disparity” reflected “deepening inequalities for people with learning disabilities”.
‘Discriminatory’ lack of data concerning autistic people
She also criticised the “discriminatory” absence of any information about the deaths of autistic people, adding that the government needed to “take immediate action to address this gap in data collection and reporting”.
Collette, a self-advocate and Learning Disability England spokesperson, highlighted the stress the high death rate was causing people with a learning disability, their families and the people who support them, adding: “The challenges of having a learning disability during Covid-19 and the caring obstacles need to be acknowledged and addressed so lessons are learned from the past and mistakes do not keep being repeated.”
On the back of the PHE report, care minister Helen Whately has asked the Scientific Advisory Group for Emergencies (SAGE) to review the findings.
However, Hatton questioned why it had taken the government so long to have the data reviewed.
“The Public Health England analysis only goes to the beginning of June, so interim analyses must have been done by July, he added.
“Why weren’t SAGE directed to look at the findings then, before the number of people with learning disabilities dying of Covid-19 started to increase again week by week?”