PHE report: COVID-19 deaths in people with learning disabilities

November 13, 2020

A report from Public Health England (PHE) has shown that the death rate from COVID-19 for people with learning disabilities is significantly higher than that of the general public.

Deaths of people identified as having learning disabilities with COVID-19 in England in the Spring of 2020 examined data from The English Learning Disabilities Mortality Review (LeDeR) and NHS England’s COVID-19 Patient Notification System (CPNS) which records deaths in hospital settings.

The PHE report found 451 per 100,000 people registered as having a learning disability died with COVID-19 between 21st March and 5th June, a death rate 4.1 times higher than the general population after adjusting for other factors such as age and sex.

But as not all deaths in people with learning difficulties are registered on these databases, researchers estimated the real rate may have been as high as 692 per 100,000, 6.3 times higher than the general public.

Deaths were also spread much more widely across the age spectrum among people with learning disabilities, with far greater mortality rates in younger adults, compared to the general population. The death rate for people aged 18 to 34 with learning disabilities was 30 times higher than the rate in the same age group without disabilities, researchers found.

The PHE report also noted that, among people with learning disabilities, the rate of COVID-19 deaths for adults in residential care was higher than the rate of COVID-19 deaths of adults with learning disabilities generally. This difference is likely in part to reflect the greater age and disability in people in residential care.

Professor John Newton, Director of Health Improvement at Public Health England, said, 'It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again.

'There are now regular tests in care homes to make sure cases of coronavirus can be quickly identified and isolated, even if people do not recognise the symptoms themselves.

'But with cases developing across the country, it is essential to practice rigorous infection control if you are in contact with someone with a learning disability, whether or not they live in a care home.

'Wash your hands, wear a mask and keep a safe distance. The fewer people you meet, the more you’ll stop the spread.'

Responding to the PHE report, Clare Taylor, National Director of Operations at Turning Point said, 'This report makes for sobering reading. The fact that if you have a learning disability you’re up to six times more likely to die of COVID-19 is a tragedy and there must be no delay in tackling this. It is a stark reminder of the pervasive impacts of health inequalities which existed before the pandemic and are being exacerbated during these unprecedented times. Reducing these inequalities should be at the heart of the response to this.

'The report substantiates the long-standing knowledge that more needs to be done to understand and address the avoidable deaths of people with a learning disability. It even acknowledges ‘limitations and deficiencies of data’, which suggest we may not be aware of the full scale of the impact...

'[This report] should be a wake-up call for everybody and a reminder that we cannot afford to forget about the most vulnerable in society.'

Kathryn Smith, Chief Executive at the Social Care Institute for Excellence also responded to the report into COVID-19 deaths of people with learning disabilities. She says, 'It is devastating to read about the disproportionate impact of COVID-19 on people with learning disabilities. The pandemic has continued to highlight the long-standing inequalities in society and particularly for those people accessing social care. This has been shown across care services, from direct exposure to the virus through to the unintended consequences of loneliness, isolation and mental health problems; as well as with the previous issues with accessing appropriate PPE and testing.

'We must continue to highlight the additional support that people with learning disabilities need during this time, including getting access to information in an accessible format and a recognition of the additional risks they can often experience through living with other long-term conditions. Our Beyond Covid-19 report highlights many issues that different people are facing. We must see the sustainable investment that we need to support people now and into the future and this must include a focus on preventative services and better workforce pay and conditions.'

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