News story legal challenge

14th May 2020 • Emma Cooper

In response to a request from the BBC, the Care Quality Commission (CQC) has released figures showing that during the period 10th April – 8th May this year, the provisional number of deaths reported across all settings where people with a learning disability and/or autism may live was 3,765, compared to 1,370 in the same period last year.

In the statement released today, CQC have said that this does not reflect the number of deaths of people with a learning disability and/or autism, which could be as much as 40 times smaller than this figure once the data on deaths of people who receive other types of care from these providers is separated out.

Currently, the information that care homes submit to CQC about the deaths of people in their care is published on a weekly basis as part of the Office for National Statistics’ (ONS) reporting on deaths. CQC are now committing to do further research and work into this data to understand the impact of coronavirus on specific groups of people, including those with a learning disability and/or autism.

A breakdown is due to be published shortly of all deaths in adult social care by age range supported by CQC data. It will present a more accurate picture of those of working age who have died in adult social care settings specifically.

In response to figures published today, Dr Rhidian Hughes, Chief Executive of the Voluntary Organisations Disability Group (VODG) said,

‘People with learning disabilities and/or autism already face significant health inequalities. We are two months into the pandemic response and that it has taken this long for CQC data to come to light showing the potential impact of COVID-19 on people with a learning disability is appalling. This highlights structural inequities at work.

‘VODG has been calling on the government and its agencies to release data on the deaths of people with a learning disability and autism. Today’s figures from CQC are a step forward but we are still miles away from having data that clearly sets out the true picture of how this pandemic is impacting upon disabled people.

‘Added to this is the fact that the government has introduced automatic testing for over 65s in care homes yet someone with a learning disability and/or autism living in that same care home environment is not able to access testing – it’s simply unacceptable.

‘Government and its agencies must shift its response significantly. It needs to be more inclusive of all groups using social care services, including people with a learning disability. We cannot continue to have a situation whereby disability services are continually neglected from government’s policy responses.

‘Every death must count and we continue to call for the open and transparent release of data on the deaths of people with a learning disability from COVID-19. We must measure all lives lost. It’s only through the consistent routine reporting and publication of data that the necessary intelligence to help inform current and future service responses can be achieved.’