The Care Quality Commission (CQC) has published data on COVID-19 deaths amongst people with a learning disability and/or autism.

This follows targeted work to analyse the impact of coronavirus on people with a learning disability or autism and how the number of deaths during this period compares to the number of deaths last year.

The analysis looked at all deaths notified to CQC between 10th April and 15th May from registered providers who offer care to people with a learning disability and/or autism (including providers of adult social care, independent hospitals and in the community), and where the person who died was indicated to have a learning disability on the death notification form.

This data shows that, during this period, 386 people with a learning disability and/or autism died. This is a 134% increase in the number of death notifications compared to the same period in 2019 (165 deaths). This new data should be considered when decisions are being made about the prioritisation of testing at a national and local level.

Of the 386 people who have died this year, 206 were as a result of suspected or confirmed COVID-19 as notified by the provider and 180 were not related to COVID-19.

184 people were receiving care from community-based adult social care services and 195 from residential social care settings.

Kate Terroni, Chief Inspector of Adult Social Care at 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.’

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 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 a dementia. That decision needs to be reviewed urgently so that symptomatic and asymptomatic disabled people can readily access tests.

‘…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.

‘…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 virus is having on disabled people and plan for more effective responses.’

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