So, here's a thread on the data on deaths released by @CQCpressoffice to @BBCBreakfast this morning - thanks to @KatieLangton1 of @BBCBreakfast for tweeting the stats, which were not included in the CQC press release
https://www.cqc.org.uk/news/stories/understanding-impact-covid-19-people-learning-disability-or-autism
#EveryDeathCounts
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The stats are for all adult social care services registered with the CQC (mainly care homes and services registered as home care), where the service has been registered as supporting adults with learning disabilities or autistic people.
#EveryDeathCounts
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According to the CQC Care Directory for 4th May https://www.cqc.org.uk/files/cqc-care-directory-filters-4-may-2020 this would be a total of 12,497 separate registered services in England - 5,605 residential care (mainly care homes), and 6,892 community-based social care (mainly home care).
#EveryDeathCounts
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So, the stats. From 10th April to 8th May 2019 (the 'baseline'), 1,370 people's deaths were notified to the CQC in these services
For the same time period in 2020, 3,765 people's deaths in these services were notified to the CQC (an 'excess' of 2,395 deaths compared to 2019)
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Some of this 'excess' can be accounted for by 1,341 people's deaths being notified as confirmed/suspected COVID-19, leaving 1,054 'excess' deaths that have not been flagged as COVID-19 related.
#EveryDeathCounts
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A few thoughts. First, these figures are from people in services registered for people with learning disabilities or autistic people, but services can be multiply registered for different groups of people with different needs.
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So even if people with learning disabilities or autistic people are in a minority (or not present at all) in a service then all the deaths of people in that service will be included.
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And many social care services are multiply registered. For example, of the 5,605 residential care services registered for people with learning disabilities or autistic people, 883 services are also registered for people with dementia.
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For home care, of the 6,892 home care services registered for people with learning disabilities or autistic people, 4,948 are also registered for people with dementia.
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This makes these stats really difficult to interpret. The CQC press release says they are doing more detailed analysis, and death notification forms would allow the identification of individuals with learning disabilities (but not autistic people) https://www.cqc.org.uk/guidance-providers/notifications/death-person-using-service-notification-form
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Second, for people with learning disabilities and autistic people, 'baseline' numbers of deaths from previous years are themselves an 'excess', given what we now about premature and avoidable deaths.
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Finally, for all the difficulty of interpretation, these figures ram home the urgency of getting better analysis relating to the deaths of people with learning disabilities and autistic people, in places beyond care homes.
#EveryDeathCounts
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