Understanding the impact of coronavirus on autistic people and people with a learning disability

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. We are now doing further work on this data so that we can better understand the impact of coronavirus (COVID-19) on specific groups of people, including autistic people and people with a learning disability.

This work includes analysing all available data on confirmed and suspected coronavirus deaths (as published by ONS) and mapping this against records which indicate whether someone was autistic or had a learning disability. This will also form part of our reporting moving forwards.

This work is a priority for us and will be published as soon as possible. This analysis cannot be based on the number of locations that provide care for autistic people and/or people with a learning disability, as the majority of these services will also be providing other care services for people who are not autistic or do not have a learning disability, or may no longer be providing learning disability services at all.

In response to a request from the BBC we have released figures to show that during the period 10 April – 8 May this year, the provisional number of deaths reported across all settings where autistic people and/or people with a learning disability may live was 3,765 (as compared to 1,370 in the same period last year) – but this absolutely does not reflect the number of deaths of autistic people and/or people with a learning disability, 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.

In independent health settings where autistic or people have a learning disability may live, 129 deaths have been notified to us versus 134 in the same period last year – but again we cannot verify this figure without completing the analysis we are currently engaged in.

The detailed analysis we are currently working on will give a more accurate understanding of the impact of coronavirus on autistic people and/or people with a learning disability. It will do this by separating the data on deaths of people with a learning disability and/or autism from the data on deaths of people receiving other forms of social care so we can understand and report on what the actual figures are and whether or not these are in line with deaths in the wider population.

We are using this information to ensure providers have the support they need to keep people safe; the more detailed the analysis we have - and are able to share with local and national providers - the more effective that support will be.

We are working with ONS who will shortly be publishing a breakdown of all deaths in adult social care by age range supported by CQC data. This will present a more accurate picture of those of working age who have died in adult social care settings specifically.

Providers are also required to inform CQC separately of deaths of people detained or subject to the Mental Health Act (MHA) under Regulation 17. The deaths notified under the MHA are not included in the dataset provided. Read our news story about the publication of those figures for England from last week.