Campaigners in legal threat over "failure to collect data on deaths of those with learning disabilities and autism during COVID-19"

Disability campaigners have sent a letter before action to five public bodies over what they say has been a failure to mandate the collection and publication of data on the deaths of people with learning disabilities and autism during the coronavirus pandemic.

Those concerned are NHS England, the Secretary of State for Health and Social Care, NHS Digital, the UK Statistics Authority and the Care Quality Commission

Under the name ‘Every Death Counts’, the campaigners said these groups had had higher early mortality rates than the general population before the pandemic and were “particularly vulnerable to the virus”.

Too little data had been made public to give a full picture of the numbers of deaths involved.

A page on the CrowdJustice website has raised £7,710 towards a £10,000 stretch target.

The group said that in 2018-19, before the pandemic, at least 41% of people with a learning disability who died had a respiratory condition.

NHS England had access to the data in question but had refused to publish it, they said, a stance that was “irrational and discriminatory given this information has been published in relation to various other protected characteristics, such as age, sex and ethnicity”.

They said the data NHS England had said it would publish following the launch of their campaign  “will only cover people who are admitted to hospital and die there” and it was unclear what period would be covered.

NHS England has been approached for comment.

Mark Smulian