What is known now …

The COVID-19 pandemic has brought into sharp relief the need for more social care research, especially within care homes. This research clearly needs to be shaped by the priorities of residents, relatives and care providers. The research and policy making world has been very slow to recognise the complexity of care homes and the expertise within them. Traditionally, research tends to focus on a gap in the body of knowledge and explore and evaluate interventions that will work for the majority. In long term care settings, care is more personalised to individuals with complex and needs and tailored to meet the demands placed by collective living. Going forward, new research methods are needed to capture the expertise and practice-informed knowledge of staff who are often working in individual care settings, without appropriate and easily applicable evidence. COVID-19 has shown how evidence created for the NHS and promoted by Public Health Education has not always been able to meet the more specific needs of care homes. A more nuanced approach is required, and the lessons learnt from those with tacit knowledge captured.

The National Care Forum (NCF) is the leading voice for not-for-profit care providers in England. Our members provide a wide range of care support services, including nursing and residential care for older people, specialist dementia services, services for people with learning disabilities and mental health problems, home care services, extra care services, supported living and supported housing. During the COVID-19 we have been approached to be partners in research, but usually when the proposal is near to completion and without enough opportunity to influence the focus and design. This needs to change, if the findings of research are to be useful to care providers in meeting the needs of their residents and relatives.

Since the beginning of the crisis, the NCF has been supporting its members to share their experiences of COVID-19 through a variety of weekly Zoom calls. We have used this intelligence to inform our influencing work with Government asking for a ‘ring of steel’ to be placed round care homes; reliable supply of affordable, good quality PPE; routine regular, comprehensive, testing for residents and staff; specialist clinical support; and additional funding for ever increasing non-budgeted, virus-related costs. It has also allowed us to canvas their opinion on emergent and pressing issues, such as, being invited to be partners on research applications for funding. About the research, their voice is clear; “it is not going to work, without us”.

Our members told us early on that the official range of symptoms that were set out for care homes to identify suspected COVID-19 cases at the beginning of the crisis were not being manifested by many older people who were getting ill. In the absence of any reliable testing programme, care homes were told to look for a high temperature and a cough, but it quickly became apparent on the frontline of care that these were not the presenting symptoms for many older people. Our members were reporting this in late March and early April. NCF took this message to the relevant stakeholders, with the anxiety that the official guidance risked under-detecting the presence of the virus. The British Geriatric Society also identified this early on and yet the official guidance has only recently been changed. Same too with research. Draft research proposals for COVID-19 funding, shared with NCF, demonstrated that researchers did not always have sufficient understanding of care homes, were not inviting the right people to participate in their studies, often proposed unrealistic interventions, and did not recognise the expertise and need to pay for the input of care home providers and/or their representatives. All of this could have been resolved more easily, with earlier engagement with providers.

What do we still need to know …

There is a real opportunity for the academic world to work with care homes and the wider care sector to research some key aspects of the COVID crisis:

• Immediate learnings from Wave One to inform a possible Wave Two – what were the different encountered   trajectories of COVID-19, what were the tipping points and top tips for its management, what worked well, what else would have helped, how could people have worked better together, what needs to be in place to ensure things are better next time?
• Immediate financial impact on the sustainability of care homes.
•  Studies that capture the tacit knowledge of expert practitioners working with individuals (especially those living with dementia), where scientific knowledge is limited and does not always apply
• Work that explores the experience of and impact on residents in care homes and their families during COVID-19. What would have helped them?
• Research focussing on the intent to treat COVID in older people in care homes to alleviate symptoms and prolong life, where desired
• An exploration of what older people want at the end of life, in response to life threatening challenges
• Impacts on the care home workforce of COVID-19, including: emotional and psychological bearings; retention and recruitment effects; changes in public perception and the influence of the media; relative differences in reward and recognition for staff; and a deeper understanding of the range of BAME impacts and how these can be ameliorated.
• How to harness the gains made with local communities connecting more with care homes
• Lessons learnt about integrated care: what worked and what more is needed?
• Exploration of the perceived role and responsibility of the wider health and social care system to support frail older people in care homes
• Now models of housing, care, and support – what this means for the choice of care in later life
• Impact of new technologies to enhance care and support of frail older people at the end of life
• Research on the future funding of social care and the need for whole system change to address the ageing population.

Some work is underway on some of these areas – for example, there is a small piece of research that the NCF is working on with Prof Karen Spilsbury and colleagues at the University of Leeds, capturing key lessons learnt so far by health and care practitioners working on the frontline (LESS COVID: Learning by Experience and Supporting the Care Home Sector during the COVID-19 pandemic) – this was the only proposal during the COVID-19 crisis that NCF was invited to partner from the beginning. A range of other applications for funding are being prepared or have been submitted for potential funding, with NCF as late partners.

How can the academic community help with this…

The research vision of the NCF is for the sector to be more at the centre of social care research: shaping research priorities around the needs of residents, relatives and staff; co-creating funding applications with researchers from the outset; exploring the issues the care sector believes are the most pressing, with recognition and funding built in to enable the participation of care providers and their workforce, along with, the people receiving care and support and their relatives. We want to explore more creative and mutually beneficial relationships between care homes and academic partners and strengthen the evidence base for best practice and methods for its dissemination. To do this, there needs to be a better understanding of the context of care settings, greater respect for and valuing of care staff expertise, and a real desire to work in partnership with care homes to enhance the quality of life for those living, dying, visiting and working in them.

The ENRICH network has made great progress in this direction.

Let’s now take it to the next level!