Deaths linked to learning disabilities and autism more than double compared to same period in 2019

A new crisis in the care sector has emerged after data revealed that more than twice as many people with learning difficulties have died during the coronavirus pandemic compared to the same period last year.

Care regulator the Care Quality Commission (CQC), working with the Office for National Statistics (ONS), analysed all death notifications during the five weeks from April 10 to May 15.

It assessed all deaths recorded by registered providers providing care to people with a learning disability and/or autism in the community and in hospitals.

The watchdog found that, during this period, 386 people with learning disabilities – some of whom may also be autistic – who were receiving care from services died. This is a 134 per cent rise compared with the same period in 2019, when 165 people receiving care died.

The figures expose issues in the struggling care sector and come following shocking data revealing that more than 15,000 deaths had occurred in care homes across England and Wales.

Charity and care workers warned that the figures were so high because the industry had been "abandoned" without adequate personal protective equipment (PPE), and hospital patients with Covid-19 were discharged into care homes full of other vulnerable people.

Responding to the latest statistics on deaths linked to learning disabilities and autism, Edel Harris, the chief executive of the learning disability charity Mencap, described the increase as "deeply troubling".

She said: "The devastating impact of Covid-19 on our community is shocking, but sadly not surprising when 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."

Dr Rhidian Hughes, the chief executive of the Voluntary Organisations Disability Group (VODG), welcomed the analysis but said it had taken the CQC "too long" to produce it.

He added: "These findings are a sad and stark reminder to us all of the impact that coronavirus is having on people with a learning disability and/or autism.

"The figures are a wake-up call for 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  dementia. That decision needs to be reviewed urgently so that symptomatic and asymptomatic disabled people can readily access tests."

Just over half of the deaths – 206 – involved suspected or confirmed Covid-19, while 180 were not related to the virus.

Some 184 people were receiving care from community-based adult social care services, and 195 from residential social care settings. There were fewer than five deaths notified in each of the other settings, including community health, hospice services and mental health services, the CQC said.

The organisation said its findings should be considered when decisions are made over prioritising tests.

Kate Terroni, chief inspector of adult social care at the CQC, said: "Every death in today's figures represents an individual tragedy for those who have lost a loved one.

"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."

The CQC said it is not mandatory for providers to tell them if a person who has died has a learning disability. Its analysis does not account for patients detained under the Mental Health Act.

The regulator is reviewing how it works with providers to ensure the data it receives is accurate and accessible.

Public Health England (PHE) is looking at the impact of Covid-19 on individuals with learning disabilities and will publish the findings.

A Department of Health and Social Care spokesman said: "Every death from this virus is a tragedy, and we are working hard to save lives and protect people most in need of support.

"We have significantly increased testing capacity so everyone with symptoms of coronavirus can be tested, and have already carried out more than four million tests.

"We are working to improve our understanding of how different groups may be affected by the virus, including those with learning disabilities or autism, to ensure we can provide the best support and protect those most at risk."