COVID-19 Insight 12: Data on death notifications involving COVID-19 received from individual care homes in England

COVID-19 Insight: Issue 12

---

Every number represents a life lost

The COVID-19 pandemic has affected the lives of everyone in the UK, and for some its impact has been intense, or even devastating. This impact is likely to have been felt particularly by those using, and working in, health and social care services.

Tragically, COVID-19 has contributed to an increase in the number of deaths across the population, including people living in care homes, both in England and throughout the world.

In many cases, the loss of a loved one has been made even harder for the relatives and friends of people in care homes who were unable to be as near to them as they would have wished in their final days and weeks due to COVID-19 restrictions. Losses will also have been felt by the staff who have cared for and supported them, and who may have built up a relationship over years.

This article accompanies our publication of data about the number of death notifications involving COVID-19 we have received from 10 April 2020 to 31 March 2021, from each care home location in England registered with us.

The data covers deaths of residents involving COVID-19 under the care of the provider as notified to us, regardless of where the death occurred, including in the care home, in a hospital, in an ambulance or any other setting. For example, a resident may have been admitted to hospital with a fracture and contracted COVID-19 while in hospital, and then subsequently died. The provider must notify CQC of the death of their resident and that this was involving COVID-19, but this alone would not indicate that the care home had positive cases of COVID-19.

In considering the data, it is important to remember that every number represents a life lost, and families and friends who are having to face the sadness and consequences of their death. It is also an opportunity to reflect on the dedication of those who worked to save and comfort lives.

Death notifications alone are not a reliable indicator of quality or safety

Tragically, COVID-19 has contributed to an increase in the number of deaths across the population, and within residential care settings.

We are presenting the data on the number of death notifications involving COVID-19 of care home residents across regions of England alongside government data on all COVID-19 deaths, so that people can view care home deaths against deaths in the wider community (which include deaths of care home residents) to help understand the wider impact of COVID-19 in their areas.

The numbers of deaths notifications alone, however, are not a reliable indicator of quality or safety in individual care homes.

Our inspectors use all the data and information we receive about a service to monitor for indications that there is a risk to the quality of care, which may lead to an inspection. Notifications of deaths are only one of these indications, but they are not in themselves a good predictor of poor-quality care, particularly given the potential influence of variable factors, including rates of local community transmission and size of the care home. Other variable factors include the characteristics of people living in the care home, including their age, health and care needs, and whether they are from Black and minority ethnic groups, for whom the pandemic has had a disproportionate impact.

There are many factors that lead us to carry out an inspection. We carried out 5,577 inspections of residential adult social care providers between 10 April 2020 and 31 March 2021. Those inspections that were risk-based were likely to be triggered by information of concern, including safeguarding referrals, whistleblowing and complaints. These, and other indicators, such as previous regulatory history, absence of a registered manager, and other notifications are more likely than death notifications to indicate where there is a risk of poorer quality care.

As well as our constant monitoring of adult social care services, we have carried out infection prevention control inspections during the pandemic so that the public can be assured across a number of key criteria that services have an effective approach to infection prevention. We looked at assurance across eight questions, which including looking at whether:

• Adequate personal protective equipment (PPE) is available for staff and residents to control infection safely
• Staff are properly trained to deal with outbreaks and the proper procedures are in place
• Shielding and social distancing are being done correctly
• Layout of premises, use of space and hygiene practice promote safety.

In November 2020, we published a report on these inspections that showed high levels of assurance in all areas of infection prevention and control. Across the eight questions we looked at, assurance ranged from 82% (for whether the service had an up-to-date infection prevention policy) to 91% (for infection prevention for visitors). Nearly two-thirds of care homes (65%) demonstrated assurance in all eight areas we looked at. Most of the report highlights good practice, but where we saw poor practice through these inspections, we took action to ensure providers acted quickly to improve the quality of care they were delivering.

Our State of Care report later this year will show how this level of assurance has risen even further, despite these findings mainly being based on ‘risk-based inspections’, which have been carried out in response to concerns about safety and quality.

How we have published and used this data since April 2020

From 28 April 2020, COVID-19 deaths in care homes notified to us have been published on a weekly basis at local authority level by the Office for National Statistics (ONS). This was in addition to ONS’ own weekly publications of COVID-19 deaths based on death registrations.

We also shared this information with the Department of Health and Social Care and other national partners to support the monitoring, planning and response to the pandemic.

In our first COVID-19 Insight report in May 2020, we highlighted the challenges, including about PPE, testing and staffing, faced by the adult social care sector from the pandemic and shared national and regional-level data on the number of deaths notified to us from care homes.

In June 2020 we wrote to all social care providers to remind them of the need to share appropriate information with families regarding outbreaks and deaths and have continued to highlight this.

We have used information from individual care homes about deaths involving COVID-19, alongside other information and any concerns received, to assess risks and make decisions about where to inspect, taking action to protect people where necessary.

We have carried out formal regulatory activity through our inspections and our monitoring approach at over 70% of care homes. This does not include any informal support that inspectors will have given to providers throughout the pandemic.

Most care providers that we have inspected have demonstrated good practice. However, where we have had concerns, we have taken swift action, including publishing the actions a provider must take, restricting a service’s operation or, in cases of significant concern where there is no safe alternative, taking action which would lead to the closure of a service.

All of these measures are designed to ensure providers act quickly to improve the quality of care they are delivering. Throughout the pandemic, we have acted to protect people by responding to specific information of concern from both system partners and from people using services, their families and from staff.

Why we are publishing now

Registered providers are required to notify us of the death of a person using their service under Care Quality Commission (Registration) Regulation 16.

Since 10 April 2020, we have asked providers to tell us whether those deaths are confirmed or suspected of being a result of COVID-19.

From 28 April 2020, COVID-19 deaths in care homes notified to CQC have been published on a weekly basis at local authority level by the Office for National Statistics (ONS). This data includes notifications of deaths of care home residents involving COVID-19, regardless of where the death occurred.

We are now publishing data showing the number of death notifications involving COVID-19 we have received from 10 April 2020 to 31 March 2021 for each care home location in England registered with us.

The information presented is deaths of care home residents involving COVID-19, regardless of where the death occurred, so the data will include deaths of care home residents that occurred in the care home, in a hospital, in an ambulance or any other setting.

We are presenting this data as an interactive dashboard enabling the viewer to see the data at national, regional and individual care home level.

We have a duty to be transparent and to act in the public interest. We made a commitment to publish data at this level, but only once we were able to do so accurately and safely.

Given the evolving national uncertainty around COVID-19 and its spread across people and communities, we felt releasing the data at the height of the pandemic could have a serious impact on continuity of care, with concerns people could use it to make decisions that inadvertently put people at wider risk if they were considering the data as a single indicator of safety. Our decision was accepted by the Information Commissioner’s Office.

We have spent time completing quality assurance processes required for publication, and have given care providers advanced sight of the data we will publish on their service, based on their notifications to us.

We believe that changing factors in the pandemic have reduced the risks around publication. The number of death notifications involving COVID-19 from care homes have decreased substantially, and there has been a successful take-up of the COVID-19 vaccine across the country.

In publishing this data we aim to provide a more comprehensive picture of the impact of COVID-19 on care homes, the people living in them and their families.

Notes about the data

It is important to note the following about the death notification data being published alongside this report held by us:

• Providers have a legal duty to notify us of deaths of people under their care. This data is based on the notifications that care home providers have sent to us.
• The notification form asks care homes to tell us whether the death was a result of suspected or confirmed COVID-19. Since it is not clear if the cause of death is COVID-19, throughout this publication release we discuss these figures as ‘deaths involving COVID-19’.

• ONS publishes their own weekly data on deaths in care homes in England. These figures may not completely tally with the deaths published by ONS. This is because ONS data is based on death registrations and the date of death, whereas CQC data is based on the date that providers notify us of a death potentially involving COVID-19.

  These figures will also be different from the data published by the government, which reports deaths that occurred within 28 days of a positive COVID-19 test both by date of death and date reported to Public Health England.

These notes should be read alongside our transparency statement, which is published with this report.

Support for people who have been affected

We are grateful for the time that families who lost their loved ones during the pandemic have spent meeting with us and the personal experiences they have shared. These discussions have helped us shape our thinking around the complex and sensitive issue of publishing information on the numbers of deaths of people involving COVID-19 notified by individual care homes.

When considering this data, we would ask for consideration and sensitivity to be shown to people living in care homes, families who have been affected, and staff working in very difficult circumstances.

It is understandable that people living in care homes, their families and staff will continue to be anxious about the risks presented by COVID-19. This is likely to be felt even more acutely where people have died after contracting the virus.

If people have concerns about the quality of care they or their loved one receives, they should be encouraged to discuss this with their care provider.

They can also tell us about it in the following ways:

• Using our online Give feedback on care form
• By email: enquiries@cqc.org.uk
• By telephoning: 03000 616161

For those who have been bereaved, there is support available at charities such as Cruse Bereavement Care.

Access the data

You can find all the national, regional and individual care home data relating to the death notifications on our interactive dashboard. You can also export the data sheets from the dashboard.

Visit the dashboard now