The Care Quality Commission (CQC) and the Office for National Statistics (ONS) have released figures regarding the number of deaths of people with learning disabilities between 10th April and 15th May of this year.
To help us better understand the impact of coronavirus (COVID-19) on people with a learning disability, the analysis looked at all deaths notified to CQC between these dates. Included were deaths within providers registered with CQC as giving care to people with a learning disability and/or autism. Also included were instances where the person who died was indicated to have a learning disability on the death notification form.
This data shows that between 10th April and 15th May this year, 386 people with a learning disability, some of whom may also be autistic, died who were receiving care from services which provide support for people with a learning disability and/or autism.
"We talk about COVID-19 all the time and the threat we are facing but no one is considering people with a learning disability".
For the same period last year 165 people with a learning disability, some of whom may also be autistic, died who were receiving care from services which provide support for people with a learning disability and/or autism.
This is a 134% increase in the number of death notifications this year.
Of the 386 people who have died this year, 206 died, or were thought to have died, because of coronavirus.
Limitations of data collection
CQC say that while this data is the most accurate data they are able to produce, it has a number of limitations;
- It is not mandatory for providers to note whether someone has a learning disability when submitting a death notification
- CQC and the ONS could not extract detailed data, including whether or not the person who died had a learning disability, from a small number (around 4%) of the forms included in this analysis due to the way the information was provided (e.g. illegible handwritten forms)
- Despite removing a large number of duplicates from this data, there is no guarantee that every duplicate has been removed
- It does not account for those detained under the Mental Health - this data is published separately
Kate Terroni, Chief Inspector of Adult Social Care at the Care Quality Commission (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".
Harry Roche, Ambassador at Mencap who has a learning disability, said:
“I feel very shocked by the news that there has been a 134% increase in the number of deaths of people with a learning disability, and I am worried that people with a learning disability are being forgotten in this crisis. We talk about COVID-19 all the time and the threat we are facing but no one is considering people with a learning disability, or people with a disability more generally, who are vulnerable.
“People with a learning disability already face problems getting equal access to healthcare, something Mencap has been aiming to change through our Treat Me Well campaign, and we cannot let this crisis make that even worse.
"The government must remember the rights and needs of people with a learning disability, whether that’s by creating more accessible information about COVID-19 or giving people with a learning disability priority access to testing alongside older people".
Dr Rhidian Hughes, Chief Executive of the Voluntary Organisations Disability Group (VODG) said:
“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 wakeup 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 a dementia. That decision needs to be reviewed urgently so that symptomatic and asymptomatic disabled people can readily access tests.
“The Voluntary Organisations Disability Group represents charities that support disabled people, including people with a learning disability and/or autism. We know our members are dissatisfied with the current testing programme for both staff and those using services, and whether symptomatic or not. Furthermore, the recent implementation of the NHS Trace and Test programme only serves to intensify those concerns.
“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
“In order to ensure future public health measures are implemented effectively across society, government must shift its focus and recognise everyone who engages with social care services.
“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.”
Edel Harris, Chief Executive of the learning disability charity Mencap, said:
"A 134% increase in the number of reported deaths of people with a learning disability is deeply troubling, especially as many are dying of COVID-19 much younger than the general population.
"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.
"While we welcome Public Health England’s move to bring together data on deaths of people with a learning disability from COVID-19 across health, care and community settings, it must be completed and released as soon as possible so that steps can be taken to address any potentially discriminatory practice now before further lives are lost.
- See more: How can we 'change up' support for people with learning disabilities and/or autism?
- See more: Social distancing is no 'blessing in disguise' for autistic people like me
"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."
A Department of Health and Social Care spokesperson 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 4 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.”