Inside CQC

This month, Debbie Ivanova looks at the data on COVID-19 deaths of people with learning disabilities.

In this month’s column, I want to talk about the impact of COVID-19 on people with a learning disability and the data that we published relating to this at the beginning of June.

Many of you will know that each week care homes submit data to the Care Quality Commission (CQC), which then forms part of the information on deaths which is published weekly by the Office for National Statistics (ONS). What is not clear from this information is how COVID-19 has impacted the lives of people with a learning disability, some of whom may also have autism, therefore we have looked at this in more detail.

We have been supported by ONS to look at all of the deaths we were notified of from providers registered with us who care for people with a learning disability and/or autism, between 10th April and 15th May, and where the person who died was indicated as having a learning disability on the death notification form. This includes providers of adult social care, independent hospitals and services in the community.

What we found is not easy to hear. The data showed that between 10th April and 15th May this year, 386 people with a learning disability who were receiving care from one of the providers mentioned above died.

Out of the 386, 206 were as a result of suspected or confirmed COVID-19 as notified by the provider.

There are limitations with this data, but what it shows is a significant increase in deaths of people with a learning disability as a result of COVID-19. People with a learning disability are at higher risk of respiratory illnesses, so access to testing is vital to reduce infection and save lives. For more detail on the data, read the news story on our website.

We welcome the decision of the Department of Health and Social care to roll out testing to all care homes, including those where younger people live. Our data showed that as well as a significant increase in deaths of people with a learning disability, the impact is being felt at a younger age range than in the wider population. We now need to think about how services in the community, particularly supported living, can have access to testing to support best practice in infection control in all services for people with learning disabilities.

COVID-19 has led to us suspending routine inspections, stopped visitors going into services, and meant thousands of people are isolated and alone. It is important that services think about how they can make sure their more closed environments do not lead to a closed culture, and keep open as many channels with the outside world as possible. We will be talking more about this in future columns.

It has been great to hear about some imaginative ways of doing this – from drive- through visits, to family ‘get togethers’ on FaceTime. We have had an overwhelming number of positive examples showing how providers have adapted and responded to the pandemic, and you can find a whole range of these on our website.

In future columns, I hope to reflect on how we have responded to the pandemic as a sector, as well as looking at how COVID-19 has affected other groups, such as the black and minority ethnic (BAME) community. In the meantime, I hope everyone is taking care of themselves as well as others.

Debbie Ivanova is Deputy Chief Inspector of Adult Social Care at the Care Quality Commission.

Share your thoughts and feedback on Debbie’s column in the comments section below.

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