In this section we discuss what our analysis means for social care as the country prepares for potential future waves of infection.

Understanding and tackling excess mortality among social care users

In addition to more than 30,500 excess deaths of those living in care homes during the pandemic, our analysis has shown that there has been significant loss of life within the domiciliary care sector, with mortality increasing by 225%. As of July, new infections and outbreaks in the general population and care homes have declined from their peak at the end of April. But deaths among those receiving domiciliary care have remained persistently above the average seen at this time of year.

Policies to tackle outbreaks of COVID-19 in care homes have been announced. The government has outlined a risk reduction framework for social care and introduced an adult social care infection control fund. However, further research is needed to understand the root cause of excess deaths among those receiving care in the community. This will be helpful to guide specific action to address excess mortality now and during any future waves.

The causes of outbreaks in social care

COVID-19 outbreaks in care homes may be driven by multiple factors, including transmission in the community, which will affect the prevalence of the virus among care home staff and visitors, as well as infections picked up during hospital stays. In relation to hospital stays, our analysis shows that between 17 March and 30 April discharges from hospital to care homes decreased in England to 86% of the historical average. Patients would have been discharged when judged medically fit to do so by a clinician. It has been highlighted that this would have been done in good faith and in the belief that the hospital was no longer an appropriate place for their care.

The reduction in discharges appears to have been driven by a reduction in the number of people admitted to hospital, which fell substantially from March onward. Nevertheless, 46,700 people were discharged from hospital to care homes between 17 March and 30 April, 7,700 fewer than previous years. The data available do not allow us to examine whether these discharges led to subsequent outbreaks in care homes. Further research is urgently needed, particularly in nursing homes where discharges from hospitals have increased.

Tackling unmet need for health and social care services

Our analysis pointed to substantial disruption to health care for care home residents, with reduced emergency and elective admissions. By reducing admissions, care home and NHS teams may have reduced the risk of transmission. There may have also been an increase in unmet health needs. Unfortunately, the data available do not allow us to assess whether this was the case. Further analysis is needed, including data on wider community care, primary care and mental health. There may also be medium and long-term health needs for social care users, workers and their families, due to indirect effects like isolation during the lockdown. As the NHS attempts to restart care that was disrupted during the first wave of the pandemic, the needs of social care users and care home residents should not be overlooked.

Addressing the long-term structural issues in social care data, funding and provision

As the Health Foundation’s briefing Adult social care and COVID-19: assessing the policy response in England so far highlights, the COVID-19 pandemic has exacerbated and amplified many of the longstanding issues within social care. These include issues with long-term underfunding of the sector, a deep staffing crisis with high vacancy rates, a complex and fragmented organisational structure and a problematic lack of data.

As illustrated by this briefing, there are key gaps in the information that is collected, particularly outside the care home system. Through the patient and public involvement we carried as part of our research, it was clear that the available data contain large gaps in capturing the needs of those receiving care, particularly in areas such as mental health or the impact of unmet social care needs on wellbeing.

There are particular challenges in how data are collected, shared and used in social care. For example, some care providers may be reluctant to share data for fear of the consequences on their finances, and the data collected may not focus enough on how care can empower users to live independent lives. Most datasets collect information about care from provider organisations, which omit care provided by individuals (paid or unpaid). Addressing these problems will require a new data strategy for social care with the primary objective of improving the quality of care. Such a strategy needs to come with investment so that the data collected can be used to improve care, for example by establishing better data infrastructure to enable real-time analysis, building skills in analysis, and fully incorporating the lived experience of users into the interpretation and use of the analysis.

Better person-level data on staffing, social care capacity, testing and health care and social care provision are needed to better prepare for subsequent waves of COVID-19, and would also bring long-term benefits. During the pandemic, we have seen how valuable health data have been in enabling new treatments and supporting innovation, such as via the RECOVERY trial. With further investment, similar innovations are possible within social care.

¶¶¶ David Oliver, consultant in geriatrics and internal medicine notes: ‘I believe that some of the now clearly mistaken decisions in local services about care homes were made in good faith, in novel and urgent contexts.’– www.bmj.com/content/369/bmj.m2334

**** We spoke to five people who, during the COVID-19 pandemic, had interacted with social care services either for their own care needs or the care needs of a loved one. We listened to their experiences and their perspectives on the crisis and the data presented in this briefing.

†††† Randomised Evaluation of COVID-19 Therapy – www.recoverytrial.net

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