• Public Health England has convened a panel to analyse deaths of people with learning disabilities and autism from covid-19
  • The news comes amid calls for greater transparency from the government over data on the deaths of these vulnerable groups
  • NHS England told HSJ data on covid-19 deaths from the Learning Disabilities Mortality Review Programme would be published next year
  • Shadow health secretary Liz Kendall, has written to the Department of Health and Social Care calling for it to publish LeDer data “immediately”

Deaths of those with learning disabilities and autism from covid-19 are to be analysed by Public Health England, HSJ can reveal.

Several senior sources have confirmed PHE has put together a group, which includes independent experts, to analyse mortality data.They had previously not been included in the government’s inquiry into the over-representation of some groups among covid fatalities.

The news comes amid mounting concerns from major charities over the of lack transparency in data collected centrally on the deaths of people from these these groups during the pandemic. 

In a letter yesterday , seen by HSJ, Labour’s shadow secretary for social care Liz Kendall, urged Department of Health and Social Care minister Helen Whately to publish data on deaths reported to the Learning Disabilities Mortality Review Programme (LeDer).

Earlier this week NHS England and NHS Improvement told HSJ the weekly data it is receiving from the national learning disability morality review programme (LeDer) on suspected and confirmed deaths of those with learning disabilities and autism from covid-19 would not be published until next year.

In her letter Ms Liz Kendall said the Government should “immediately” release the deaths notifications being provided by LeDer along with a “retrospective” analysis from the beginning of the pandemic.

She added: “The Government should also seek to better understand the impact of covid-19 on people with learning disabilities and autistic people in specialist mainstream mental health units.”

Tim Nicholls, head of policy at the National Autistic Society, said: “Public services have been failing for years to record data about autism. As a result, we are going to struggle as a society to really know about the impact of coronavirus on the 700,000 autistic children and adults in the UK.

“This data is vital for tackling the huge health inequalities autistic people continue to face, by making sure the NHS really understands the needs of autistic children and adults across the country and can plan accordingly. Crucially, it will also help hold public bodies to account.” 

He said it is right that PHE are looking into how many autistic people and those with learning disabilities have died from coronavirus. However, raised concerns that the poor recording of autism by public services, could mean this group are missed out again.

“On top of this, we were incredibly disappointed that disabled people, including autistic people, appear not to be included in a Government and Public Health England review into the health outcomes of coronavirus announced earlier this week. This decision must be reconsidered. Autistic people must not be ignored.”

Also speaking to HSJ, Rhidian Hughes, chief executive the Voluntary Organisations Disability Group said: “We are calling for full data transparency for all groups, as the health and care system responds to the pandemic…arguably it is not right that data from the LeDer programme and other initiatives is being used in a clandestine way without public scrutiny.” 

Edel Harris, chief executive for Mencap, said it was ’unacceptable’ to have to wait until the 2021 LeDer report for data on covid-19 deaths.

HSJ asked Public Health England for further details on the panel it has convened and the data it would be looking at. It did not confirm whether the data and analysis would be published. 

Dr John Newton, director of health improvement at Public Health England, said: “Having an accurate understanding of how diseases affect different groups of people is hugely important and a fundamental part of PHE’s role. This agreement with NHS England and Improvement, gives us access to the University of Bristol’s mortality data for people with learning disabilities.

“It enables us to take a first step in analysing the impact of covid-19 on people with learning disabilities. 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. This work will follow on from our rapid data review reporting later in May

“People with learning disabilities are generally more likely to have health problems than the general population and sadly they die younger on average, than the general population, so it’s crucial that we understand how covid-19 is affecting people with these disabilities.”

NHS England and Improvement, the DHSC were approached for comment. 

This story was updated at 17:10 after HSJ recieved a comment from Public Health England and Mencap.