Part 1: How did COVID-19’s impact on social care unfold?

 

In this section we track the course of the pandemic in England across social care, documenting the available evidence of the spread of COVID-19 and the impact it had on mortality among social care users and staff.

How did care home and domiciliary care outbreaks vary across England?

Public Health England data on care home COVID-19 outbreaks indicate that more than a third of all care homes had reported outbreaks by the end of April. This is not unexpected. Modelling work from academics that was considered by SAGE had indicated that without intervention, we could expect 75% of care homes nationally to have at least one outbreak. However, the national figure obscures substantial regional variation. Mirroring the spread in the wider community, London was initially the most heavily affected area, but outbreaks quickly spread. By June (and as shown in Figure 1), the north-east of England had the highest proportion of affected care homes at 54.2%.

Public Health England data track the number of new care homes reporting an outbreak and do not track the number of new infections in each care home over time in detail. While more detailed information is collected (Box 2), the publicly available data do not show if previously affected care homes are currently dealing with continued or new outbreaks, or whether infections have been successfully controlled.

Sparse and incomplete data mean that there is not enough information to understand whether the pandemic progressed in a similar way across domiciliary care. The CQC reports that from 2 to 8 May, approximately one-fifth of home care agencies were caring for at least one person with COVID-19. But these figures are not directly comparable with those from Public Health England on care home outbreaks (Box 2).

Box 2: COVID-19 outbreak reporting

Public Health England-reported care home outbreaks

Outbreaks in care homes are monitored by Public Health England, with local health protection teams responsible for making assessments and ordering COVID-19 testing. These data have been made public with weekly updates since 29 April 2020 and began on 9 March, when 33 care homes reported outbreaks.

Care home capacity tracker

CQC-registered residential and nursing care home providers submit various data to the Capacity Tracker, including bed capacity, the number of COVID-19 cases, workforce absences and levels of personal protective equipment (PPE). The National Audit Office (NAO) estimated an average daily response rate of 29%. These data are not made public and we did not have access to them for this briefing.

Home care tracker

CQC-registered domiciliary care providers submit various data to the Home Care Tracker, including the number of people using services, the number of COVID-19 cases, workforce absences and PPE levels. Data collection began on 13 April and the NAO estimated an average daily response rate of 52%. The tracker only covers regulated organisations and not individuals providing care. Again, these data are not made public.

Having detailed data available on how outbreaks have occurred across different social care settings would allow local public health teams to identify areas of high infection risk and ensure that infection control measures (such as lockdowns, adequate PPE supply and COVID-19 testing) can be put in place. It would also enable the local coordination of efforts across services to reduce the spread of infection among support staff, those receiving care and their loved ones during the outbreak.

The total mortality in the care home sector so far

In England, the first recorded deaths from COVID-19 in care home residents occurred on 6 March 2020. Figure 2 shows deaths in care homes reported to CQC over time. By 19 June there were 17,736 notifications of deaths involving COVID-19 among care home residents, almost 40% of all COVID-19 deaths in England.

During the same period, there was also an increase in total excess deaths among care home residents. Excess deaths are additional deaths, compared to the number usually expected at that particular time of year. Between 23 March and 19 June 2020, there were more than 30,500 excess deaths in care homes (208% of the deaths seen in previous years). 12,800 of these excess deaths (compared to data from 2017–2019) were not recorded as linked to COVID-19.

As excess deaths include mortality where COVID-19 was not recorded, as well as deaths where it was, they are considered a more appropriate estimate of the total likely impact of the pandemic on mortality. The excess deaths reported in this period may include undiagnosed COVID-19 cases, particularly if testing was not easily accessible. But these deaths may also result from indirect effects of the pandemic. The impact of isolation, reduced social care services and difficulty in accessing health care may well have contributed to the excess mortality. The reduction of non-COVID-19 linked deaths by early May might indicate COVID-19 cases were being better identified as such, or that the indirect impacts of the pandemic were being more successfully addressed. By 19 June, deaths from any cause continued to fall and had returned to the levels usually observed at this time of year.

The total mortality among those receiving social care in their homes

While deaths of people living in care homes have hit the headlines, the situation among those receiving domiciliary care has received much less attention. The first COVID-19 death notifications of those receiving care at home were recorded with the CQC on 10 April. By 19 June, the CQC had received notifications of a total of 819 COVID-19 deaths in domiciliary care.

But deaths were rising among people receiving domiciliary care even before 10 April, as shown in Figure 3. Between 23 March and 19 June, the number of death notifications to CQC was 225% of the number seen in 2017–2019 – an estimated 4,500 additional deaths. While the absolute number of deaths reported in domiciliary care is smaller than in care homes, the proportional increase is greater. In addition, although the number of deaths linked to COVID-19 in domiciliary care has reduced over time, as of the end of June, excess non-COVID-19 linked deaths remained in excess of what has been reported in previous years.

Understanding the reasons for these excess deaths where COVID-19 has not been recorded is critical. If these deaths are linked to COVID-19 infection, but not recorded as such, then it raises questions about the adequacy of COVID-19 testing programmes in social care. It also means that the spread of infection among those receiving social care in the community has been underestimated. If the deaths have been correctly coded, and are linked to indirect effects of the pandemic (such as delayed access to health or care services), then this would mean that urgent action is needed to address this unmet need.

It is worth noting that other factors may have contributed to increases in death notifications from care providers. For example, given an overall decrease in hospital admissions in the population, deaths are more likely to have occurred at home instead of in hospital during this period, and therefore reported by domiciliary care providers.

The CQC only collects information on deaths from registered and regulated organisations providing social care at home and in the community, therefore omitting individual self-employed carers. Organisations are only required to report deaths that occurred while a regulated activity was being provided or may be a result of that regulated activity. This means that it is likely that CQC’s figures significantly underestimated the true impact of the pandemic on people receiving domiciliary care. Also, deaths may not have been reported to CQC when care was suspended due to lockdown measures, where care was not routine or frequent, or where care was suspended for other reasons, such as a hospital admission. The data collection methods also omit deaths from those receiving care from self-employed or unpaid carers.

Do social care users from more vulnerable groups have a higher risk of death?

COVID-19 does not affect all people receiving social care equally. CQC has noted high numbers of death notifications (across all types of care providers) for people with learning disabilities and those detained under the Mental Health Act. It has also raised potential concerns about a disproportionately high number of deaths among social care recipients from minority ethnic groups, particularly black adults. Further work is needed to understand the reasons for these deaths and identify if there are other individual characteristics or features of care provision linked to greater risk so that appropriate protections can be put in place.

Excess mortality among social care staff

It is not just those receiving social care who have lost their lives during this pandemic. ONS published analysis of data from both England and Wales (covering 9 March to 25 May 2020), showing significantly raised COVID-19 death rates among those working in social care (managers, nurses and social care workers, care home workers and home carers). ONS highlights that in this group, care workers and home carers account for the highest number of COVID-19 deaths (76%, or 204 of 268 deaths). We do not know exactly when these deaths occurred, so it is not possible to understand the extent to which more recent policy changes and infection control measures have improved safety for staff.


§ Public Health England data available at time of writing cover the period to 28 June 2020.

ONS data – sources vary by the cut-off date for death registration; 20 June for care home resident deaths and 27 June for deaths in the whole population.

** Self-employed carers are poorly captured by current data sources, but Skills for Care estimates that 75,000 individuals receiving direct payments employ their own staff. The number of people paying for self-employed carers through self-funding or other funding streams is unknown.

†† Figures include staff aged 20–64 years old; deaths among staff older than 65, who are likely to be at higher risk, are not represented.

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