More than 200 people with a learning disability have died as a result of suspected or confirmed COVID-19 over the period of one month.
The Care Quality Commission has reported that 386 people with a learning disability, some of whom may also be autistic, who were receiving care from a registered provider, died between April 10 and May 15. This is an increase of 134% on death notifications this year.
Of these deaths, 53% (206) were as a result of suspected and/or confirmed COVID-19 as notified by the provider and 108 were not related to COVID-19.
The data shows that 184 people were receiving care from community-based adult social care services and 195 from residential social care settings.
In other settings, such as hospices and mental health services, the number in each setting was less than five people and cannot be reported for confidentiality reasons.
The charity Mencap said the “devastating impact” of COVID-19 on people with learning disabilities is “shocking”, but “sadly not surprising”.
Chief executive Edel Harris said: “We have long been warning that the healthcare rights of people with a learning disability are under threat like never before. Throughout this crisis, we have repeatedly challenged discriminatory healthcare guidance and practice, and we continue to support people with a learning disability and their families to access the treatment and support they have a right to.
“We’ve been telling the government for weeks that it is putting people with a learning disability at risk by not giving them priority testing; it’s time the government acted to make sure that everyone who needs social care, regardless of their age, disability or care setting, is prioritised for testing. This is a matter of life or death, yet people with a learning disability continue to be forgotten.”
Dr Rhidian Hughes, chief executive of the Voluntary Organisations Disability Group (VODG), said the figures are a “wakeup call” for the government to “put right” its testing programme that is currently “neglecting” disabled people of working age who use care services.
“The current focus of the testing programme is on older people in care homes with a diagnosis of a dementia. That decision needs to be reviewed urgently so that symptomatic and asymptomatic disabled people can readily access tests.”
Hughes recently told HCI that it is urging the government to shift its response to the pandemic to be more inclusive of all groups using social care services.
Speaking today, he added: “People who live in potentially vulnerable circumstances deserve to be at the heart of an equitable and fair testing system. That requires government to actively consider the needs of everyone who uses care services, not just those using some parts of it, such as care homes for older people.”
Commenting on the CQC data release, Hughes said: “This analysis is welcome. However, given that we are more than three months into the pandemic, it has taken the Care Quality Commission too long to get to this point. We need all relevant arms-length bodies to work together so we can fully understand the impact that this is virus is having on disabled people and plan for more effective responses.”
Kate Terroni, chief inspector of Adult Social Care at the CQC, said the new data should be considered when decisions are being made about the prioritisation of testing at a national and local level.
“Every death in today’s figures represents an individual tragedy for those who have lost a loved one,” she added.
“While we know this data has its limitations what it does show is a significant increase in deaths of people with a learning disability as a result of COVID-19. We already know that people with a learning disability are at an increased risk of respiratory illnesses, meaning that access to testing could be key to reducing infection and saving lives.
“These figures also show that the impact on this group of people is being felt at a younger age range than in the wider population – something that should be considered in decisions on testing of people of working age with a learning disability.”