Statement about CQC report on deaths of people with a learning disability from COVID-19

All of us at the DSA were very concerned to read the Care Quality Commission report (published on 2 June) that demonstrates a significant increase in the deaths of people with a learning disability from coronavirus (COVID-19).

The analysis shows there has been a 134% increase in the number of death notifications this year compared with the same period in 2019. Of the 386 people with a learning disability who have died this year, 206 were as a result of suspected or confirmed COVID-19.

We feel that everyone working within the care sector must protect the most vulnerable in our society. Every one of these deaths is a tragic loss of life. The Government needs to prioritise the needs of everyone who uses care services, not just those using some parts of it, such as care homes for older people.

However, we have also been made aware of many providers whose focus has been on preventing the virus entering their settings. It is now essential that services  have access to adequate PPE and the broadest  testing regime for people with a learning disability living in all care and supported living settings (even if individuals are not showing symptoms of an infection) in recognition of the greater inherent risks within some of  these shared living environments.

We must stress that this data does not relate specifically to individuals with Down’s syndrome, although it is naturally a source of great sorrow to us all. For many families who have been prevented from visiting (in person) their loved one who has Down’s syndrome over the last few months, this will have made this period an especially anxious time.

Please do contact us if you have any concerns or questions relating to the care your relative is receiving.

Helpline – 0333 1212 300


Our email and telephone Helpline service is open as usual. We are open Monday to Friday, 10am-4pm.

Our Helpline information officers and specialist advisers  welcome Helpline emails sent to info@downs-syndrome.org.uk.

Emails are reaching our wider team more rapidly than telephone calls, at present.

Our closed Facebook groups may also provide you with information and support.

We are pulling together all information, resources and advice on coronavirus here.