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COVID-19: leading nurse demands details of learning disability deaths

Nurse academic says figures about deaths from COVID-19 of people with learning disabilities are needed now to help prevent unnecessary deaths

Picture shows a couple with Down's syndrome weating face masks. A nurse academic says figures on of learning disability deaths from COVID-19 are needed now to help prevent unnecessary deaths
Picture: Shutterstock

Information about deaths from COVID-19 of people with learning disabilities must be released immediately, a nurse academic has said in a demand aimed at policymakers.

The call follows confirmation from Public Health England (PHE) that an expert group will analyse data on deaths of those with learning disabilities and autism from COVID-19.

However, NHS England and Improvement told the Health Service Journal last week that the data would not be published until 2021.

Too late to look at deaths of people with learning disabilities retrospectively in 2021

Kingston University and St George’s, University of London chair of intellectual disability and palliative care Irene Tuffrey-Wijne said the data must be released as soon as possible to prevent deaths.

Kingston University and St George’s University of London chair of intellectual disability and palliative care Irene Tuffrey-Wijne
Irene Tuffrey-Wijne

‘It’s not good enough to look at this retrospectively in 2021,’ she said. ‘It will be too late then to prevent unnecessary deaths in 2020.’

Charities have also expressed concerns over the of lack transparency in data collected centrally on the deaths of people from these groups during the pandemic. 

Important to have a timely, full and accurate picture of COVID-19-related deaths

Mencap chief executive Edel Harris said: ‘It important now more than ever that we have a timely, full and accurate picture of COVID-19-related deaths of people with a learning disability across all settings.’

Public Health England director of health improvement John Newton said the work of the new expert group would be an important first step.

‘It enables us to take a first step in analysing the impact of COVID-19 on people with learning disabilities,’ he said. ‘Further data will be needed for us to conduct detailed research for this group, and once we have access to this and the analysis is complete, any findings will be considered.’

A Department of Health and Social Care spokesperson said it was critical to better understand how to protect groups that might be disproportionality affected by COVID-19.

The spokesperson said: ‘NHS England and PHE’s work will contribute to our understanding of factors that impact on someone’s susceptibility to the virus and we’ll continue to review data sources to understand the effect of COVID-19 on particular groups of people, including those with disabilities, to protect lives and limit the spread.’

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