Publication of statistics on deaths involving COVID-19 in care homes in England: transparency statement

Overview

The Care Quality Commission (CQC) made a commitment to publish data on statutory notifications from individual care home providers of people whose deaths involved COVID-19 as soon as we were able to do so accurately and safely.

CQC consider that the time is right to publish this data and fulfil their duty to be transparent with the public. Deaths in care homes have decreased substantially, and a high proportion of the care home population have now received the COVID-19 vaccine. Moreover, similar data has been recently published by both the Crown Office and Procurator Fiscal Service as well as the Care Inspectorate in Scotland (CIS) and the National Records Scotland (NRS).

The figures will include:

• all death notifications by care home providers to CQC between 10 April 2020 and 31 March 2021 involving COVID-19 (where the deaths have been either suspected or confirmed COVID-19)
• number of COVID-19 deaths (suspected or confirmed) of care home residents regardless of where the death occurred
• all care homes (with nursing services and those without), regulated by CQC, which have reported at least one death involving COVID-19 over this period. CQC regulates care homes for adults and older people in England as well as a small number of care homes which also provide care to those under 18
• presentation of deaths involving COVID-19 per care home by financial year quarters (although the first quarter being reported is from 10th April 2020 as the date we asked providers to specifically indicate COVID-19 on the death notifications form)
• data that is based on the date the notification was received by CQC which may be different from the date of death.

Description of the data source

Care home providers have a duty to notify us when someone using their service dies, under Care Quality Commission (Registration) Regulation 16. Providers must tell us if:

• the person died while a regulated activity was being provided
• their death may have been a result of the regulated activity or how it was provided

This means providers must tell us about the death of a person using their service. This includes:

• date of death
• place of death
• (from 10 April 2020) whether the death involved COVID-19 whether confirmed or suspected coronavirus.

When viewing the death notification data held by CQC, it is important to bear in mind the following context:

• In the initial weeks of this reporting period, there were higher notifications of deaths with suspected COVD-19, but as testing was expanded, these numbers reduced
• The inclusion of a death in the published figures as being involved with COVID-19 is based on the statement of the care home provider, which may or may not correspond to a medical diagnosis or test result or be reflected in the death certification.
• The published figures will include deaths of residents in care homes with nursing (nursing homes) and care homes without nursing (residential care homes), regardless of where the death occurred (for example a hospital). Even though the notification forms ask the provider to tell CQC about the place of death, the data used in this release are for deaths of care home residents regardless of place of death
• The published figures are based on the date that the notification was provided to us rather than date of death as CQC has more certainty about when the death was notified.

All providers must send their notifications directly to CQC without delay. Providers can notify CQC using the webform on the CQC Provider Portal or using the MS Word form on this website and returning this via email.

Based on the information from notifications, we have observed that on average providers notify CQC about 5 days after the death, with low levels of reporting at the weekend and high levels on the first working day of the week. Occasionally care homes submit a batch of unreported historic notifications relating to earlier deaths which may inflate the figures for a quarter.

On receipt of the notification, CQC’s National Customer Service Centre staff key in the main fields from the form into internal systems and make the full form available to their inspectors. If providers submit a blank form or one that is deemed insufficiently complete, CQC will contact the provider to try and obtain the essential missing information. If no follow up response is provided to confirm whether the death was as a result of confirmed or suspected COVID-19, the assumption made is that they were non-COVID deaths.

Quality Assurance

Before releasing the data, we have undertaken quality assurance. We have checked that the information provided to us has been accurately recorded on our systems against the care home, ensuring that the COVID-19 status recorded reflects what has been indicated on the form. We have also reviewed whether these were confirmed or suspected COVID-19 so we can report that these were deaths involving COVID-19.

Sometimes we receive a notification more than once about the same death from a care home. Every effort is made to remove duplicate notification records but as individuals are not referenced in a notification, it is impossible to eliminate all duplication. Once analysed, checks are made on the analysis undertaken following CQC’s standard quality assurance processes.

A small number of care homes have told us that they have made an error in the data they have reported to us. This is not an error in the recording of this information by CQC. These have been highlighted with an asterisk and may be revised post-publication, subject to review.

Previously published data

CQC has not previously published deaths notifications data at care home location level. This is a one-off publication and we have no plans to publish this as regular data as we feel the ratings and assurance statements provide the best view on quality and safety of care.

Technical definitions

The information notified to CQC includes the date of notification, reporting location, and (from 10 April) whether the death was a result of confirmed or suspected coronavirus (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.

The inclusion of a death in the published figures as involving COVID-19 is based on the statement of the care home provider, which may or may not correspond to a medical diagnosis or test result or be reflected in the death certification. We do not undertake any validation of the data provided to us. We do not contact the provider about the data, except in cases where the form is incomplete.

These are notifications of deaths of people in care of the provider, who is required to inform CQC of deaths of those under their care regardless of the cause of death or where the death occurred. The cause of death may not have been COVID-19, but the care home would have indicated that the person had COVID-19 when death occurred. This does not necessarily mean that the care home had COVID-19 cases, as COVID-19 could have been contracted elsewhere.

For example:

• a resident may have been admitted to hospital with a fracture and contracted COVID-19 whilst in hospital, and then subsequently died
• a resident may have been discharged from another setting to the care home, with COVID-19, for end of life care and later died with COVID-19, not from COVID-19.

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.

For breakdowns by region, care homes are allocated based on the address of the registered location.

For the purpose of this publication, we have grouped care homes into size bands based on number of registered beds as of 18 July 2021. We have categorised care homes with 1-10 registered beds as Small, those with 11-49 beds as Medium, those with 50+ beds as Large. This may not be the same as the number of registered beds at the time that the death occurred. Registration data changes when CQC approves any application from providers for changes. Since this a dynamic dataset, we are using the current data to categorise care homes by size.

Designated settings are defined as Winter discharges: designated settings - GOV.UK (www.gov.uk).

While every effort is made to ensure notifications are correctly notified involving COVID-19, the above limitations need to be borne in mind when making use of the data presented.

What the data is about

The CQC data published has the following features:

• We are reporting on care homes which were registered with CQC during this period. Some of these locations may no longer be active but are included for reasons of transparency.
• This data includes death involving COVID-19 of all care home residents where it was notified to CQC
• There is an average of five days’ time lag between the date notified to CQC and date of death
• Where providers have failed to confirm if the death was as a result of confirmed or suspected COVID-19, after having been requested to do so, the assumption made is that they were non-COVID deaths.

What this data is not about

• The CQC data is different from the official data published by the government (https://coronavirus.data.gov.uk) produced by PHE, as that is based on deaths that occur within a time frame from a positive COVID-19 test
• The data published by the government may include some of the deaths of care home residents where these have been reported to local health protection teams or are reported as part of the deaths in hospitals
• The CQC data is also different from the data published by ONS which is based on the date of the death registration and where COVID-19 has been mentioned on the death certificate
• The CQC data presented here in financial year quarters may differ slightly from the weekly data CQC publishes via ONS because of the dates considered for a full quarter
• Care must be taken when looking at this data in comparison with other data sources. This is data that has been notified to us and we can’t confirm that these are deaths were due to/or with COVID-19. This is why we describe these as deaths involving COVID-19.
• The CQC data in itself does not provide an assessment of quality or safety at a care home.

Comparison with other sources of data

The main differences between the CQC data, ONS death registrations and other published sources of data on deaths involving COVID-19 are summarised in Table 1.

Please also refer to our transparency statement we publish as part of the ONS weekly publication.

Definitions of COVID-19 deaths between different sources

UK Government published COVID-19 deaths (as published on GOV.UK)

Coverage

• UK (however we only include England and Wales breakdowns for comparable coverage with ONS data).

Inclusion

• Deaths in hospitals (this is wider than hospitals).
• Deaths where patient has been tested for COVID-19.

Timeliness

• Provided daily but not officially registered. Data are provided to NHS-E directly by hospitals.

ONS COVID-19 deaths registered

Coverage

• Registrations in England and Wales.

Inclusion

• Any place of death, including Nursing homes.
• Deaths where COVID-19 has been mentioned on the death certificate.

Timeliness

• Weekly registrations are 11 days behind because of the time taken to register, process and publish.

ONS COVID-19 death occurrence (actual date of death)

Coverage

• Registrations in England and Wales.

Inclusion

• Any place of death, including Nursing homes.
• Deaths where COVID-19 has been mentioned on the death certificate.

Timeliness

• Weekly registrations are 11 days behind because of the time taken to register, process and publish.

Care Quality Commission deaths in care homes (date of notification received)

Coverage

• Deaths notifications received by providers of CQC registered locations in England.

Inclusion

• Deaths in care homes.
• Deaths where the care home provider has stated COVID-19 as a suspected or confirmed cause of death on the death notification.

Timeliness

• Daily deaths notifications by date of notification. These take on average 5 days to receive and process.

Care Quality Commission deaths of care home residents (date of notification received)

Coverage

• Deaths notifications received by providers of CQC registered locations in England between 10 April 2020 and 31 March 2021.

Inclusion

• Any place of death, including Nursing homes.
• Deaths where the care home provider has stated COVID-19 as a suspected or confirmed cause of death on the death notification.

Timeliness

• Daily deaths notifications by date of notification. These take on average 5 days to receive and process.

Public Health England (PHE)

Coverage

• Data on COVID-19 associated deaths in England are produced by PHE from multiple sources linked to confirmed case data.

Inclusion

• Deaths occurring in hospitals. Deaths notified by local PHE Health Protection Teams. ONS death registrations linked to laboratory confirmed COVID-19 cases. Laboratory reports where a person has had a positive COVID-19 test linked to death reports from electronic hospital records.
• A death in a person with a laboratory-confirmed positive COVID-19 test and either died within 60 days of the first specimen date or died more than 60 days after the first specimen date, only if COVID-19 is mentioned on the death certificate
• A death in a person with a laboratory-confirmed positive COVID-19 test and died within (equal to or less than) 28 days of the first positive specimen date.

Timeliness

• Average 3 day time lag between the date of death and the date reported to PHE. Using multiple overlapping data sources, this delay is reduced by approximately 1-2 days.

Frequently asked questions

1. Why are CQC publishing the data as quarterly figures?

   We believe that quarterly figures will strike the best balance between transparency and the personal privacy of people who died and their families.

   Quarterly figures will allow the public to see the impact of COVID-19 on care home residents over the course of the year whilst minimising the risk that individual people will be identifiable.

2. Why is CQC not publishing non-COVID-19 deaths, as Scotland has done?

   We are focussing on death notifications involving COVID-19, as that has been the ask under the Freedom of Information request. We believe it is in the public interest to be transparent on COVID-19 deaths and publishing non-COVID-19 deaths alongside COVID-19 deaths increases the likelihood that individuals could be identified.

Further reading

Excess mortality for care home residents during the first 23 weeks of the COVID-19 pandemic in England: a national cohort study.

Details of data sources included in CQC data dashboard

CQC death notifications

As outlined in the Technical definitions above.

PHE data series on deaths in people with COVID-19

Death in a person with a laboratory-confirmed positive COVID-19 test and died within (equal to or less than) 28 days of the first positive specimen date.

PHE combines data from 4 different sources on a daily basis:

1. Deaths occurring in hospitals, notified to NHS England by NHS trusts
2. Deaths notified to local PHE Health Protection Teams in the course of outbreak management
3. Laboratory reports where a person has had a laboratory confirmed COVID-19 test linked to death reports from electronic hospital records; from 1 June this includes laboratory reports from both Pillar 1 and Pillar 2 testing:
   1. Pillar 1: swab testing in PHE labs and NHS hospitals for those with a clinical need, and health and care workers
   2. Pillar 2: swab testing for the wider population, as set out in government guidance.
4. Office for National Statistics (ONS) death registrations which can be linked to laboratory confirmed COVID-19 tests.

Further details can be found in the PHE data series on deaths in people with COVID-19: technical summary.