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Increase in deaths in settings for people with a learning disability and/or autism during COVID-19 pandemic is 'totally unacceptable'

15 May 2020

The Care Provider Alliance (CPA) is saddened by the figures released on 14 May by the Care Quality Commission (CQC) showing that during the period 10 April – 8 May this year, the number of deaths reported across all settings where people with a learning disability and/or autism live was 3,765 - compared to 1,370 in the same period last year. This data shows a 175% increase in deaths, which is totally unacceptable.

The data has been caveated by CQC to indicate that the figures represent the number of deaths in services that are registered to provide support for people with a learning disability and/or autism, but these services may also be registered for other services and specialisms. 

This highlights the issue that there is no clear data regarding the number of people with a learning disability and/or autism within the figure of 3,765 who have died. People with a learning disability and/or autism live in a variety of settings - including care homes, with families or in the community. The ambiguity in the data and lack of clarity around which deaths are those of people with a learning disability or autism is alarming.

We need a detailed analysis to provide a meaningful understanding of the data and give clarity to the strategic and operational approach required to support people with a learning disability and/or autism. The numbers alone are not enough.

Lisa Lenton, chair of the Care Provider Alliance (CPA) says:

 “The lack of focus, data and testing of people with a learning disability and or autism is deeply concerning. Sadly, it was not surprising to hear in the BBC report that it was felt this group of people were at the ‘back of the queue’. This is evidenced by the lack of COVID-19 testing available for working age people, many of whom are people with a learning disability or autism. Concerns over Do Not Resuscitate (DNR) orders automatically assumed in a number of places for people with a learning disability or autism is also unacceptable and disrespectful of people’s human rights – but these assumptions are happening. "

“Historic systematic failure continues to impact people with a learning disability and autism and this must stop. The data needs to tell us why people may have died prematurely, the settings involved and if there were underlying health conditions. We need to have a proper analysis of the data in order for the right strategic actions to be taken.”


Note to Editors:§

  • The Care Provider Alliance (CPA) brings together the 10 main national associations which represent independent and voluntary adult social care providers in England.  We work to represent the sector and ensure a coordinated response to the major issues that affect it.
  • The Care Provider Alliance is an informal body with a rotating chair. Membership is of the representative associations with a national membership across the whole of England. However, some CPA members also represent services in Scotland, Wales or Northern Ireland.
  • Together our members provide care and support to 1.2 million people through residential, home-based and community services, whether commissioned by local authorities and the NHS or privately purchased. Together our members employ over 620,000 care workers.
  • Our members’ services include residential and nursing care, homecare, supported living and extra care housing, shared lives schemes, advocacy and telephone helplines. They support children, adults of working age and older people. 
  • Understanding the impact of coronavirus on autistic people and people with a learning disability
  • See CPA’s information on coronavirus.
  • For more information on the Care Provider Alliance visit our about us page

Media contact: Edna Petzen, edna.petzen@nationalcareforum.org.uk 07397 158596