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Public Health England: review of data on deaths of people with learning disabilities in England during pandemic.

12th November: Public Health England  publishes a report  on ‘COVID 19 deaths of people identified as having learning disabilities’.

The summary is available online here. (It  is actually an abbreviated plain English version of the summary in the full report).

The summary (let alone the full report) still needs to be read in full, because, as it explains, it is the result of statistical analysis of  ‘best available’ data on learning disability and mortality. (And data quality on learning disability has been a perennial problem).

Details of the main findings will follow below. The report received remarkably little media attention upon publication. But today an article by Jonathan Senker, CE of advocacy and involvement charity VoiceAbility, entitled ‘Covid-19 deaths must prompt better healthcare for people with learning disabilities’ has appeared in the Guardian Society section .  Jonathan calls for  future improvements to address failings in health care which existed before the Covid crisis. In the immediate future he has two requests:

  • “People with learning disabilities should be given a higher priority for coronavirus vaccinations when they become available.
  • There should be regular asymptomatic testing for all people with learning disabilities and support staff – not just those in residential care settings. This should also be extended to family carers.”

Rescare agrees with these suggestions.

The Main findings (from PHE Report Summary) now follow:

LeDeR received 623 reports of deaths, which were definitely or possibly COVID-19 related, among people with learning disabilities between the beginning of February and 5 June. This suggests an estimated national total of 956 deaths, after accounting for under-reporting.

Based on the deaths reported to LeDeR, the COVID-19 death rate for people with learning disabilities was 240 deaths per 100,000 adults with learning disabilities. This is 2.3 times the rate in the general population for the same period. However, after adjusting for under-reporting the estimated rate was 369 per 100,000 adults, which is 3.6 times the rate in the general population.

CPNS, which only records deaths that happen in hospital, recorded 490 deaths of adults with learning disabilities with COVID-19 up to 5 June. This is a rate of 192 deaths per 100,000 adults with learning disabilities, which is 3.1 times the rate for adults without learning disabilities. This is likely to be an underestimate as a quarter of deaths reported in CPNS do not say whether or not the deceased had learning disabilities.

Most deaths (82%) of people with learning disabilities from COVID-19 happened in hospital. This was higher than the proportion of all deaths in previous years (60%) and higher than the proportion of COVID-19 deaths in the general population (63%).

During the peak 3 weeks of the pandemic, the number of deaths from all causes for people with learning disabilities were 3 times the average for the corresponding period in the 2 previous years. For the general population, deaths were twice as high during the same 3-week period, than the 2 years before.

Of the deaths recorded in the CPNS up to 5 June, 1.8% were of people with learning disabilities. GPs in England recognise only 0.57% of adults registered with them as having learning disabilities. So, adults with learning disabilities were over-represented by at least 3.1 times among the numbers of people dying. The disparity was much larger in younger age groups.

RESCARE

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