Social Care research
Today (May 26th 2021), I attended a Zoom-based seminar on Social Care research run by the Research Design Service (South Central) of the National Institute for Health Research (NIHR). It was excellent. I will discuss it here. Anyone wishing to see the slides can download them from this webpage. The talks are also available on YouTube. This is on the NIHR Research Design YouTube site, which houses many recorded meetings. The main message for me was that social care and rehabilitation are almost indistinguishable and face similar problems in research. Indeed, the only research difference was that social care research is now where rehabilitation research was when I started in 1980. I hope that they can take advantage of our experience. This post was updated and lengthened on June 20th 2023, as part of my quality improvement programme. I have added further evidence to support my hypothesis that Social Care and Rehabilitation overlap so much that all attempts to separate them will fail.
Table of Contents
The difficulty distinguishing healthcare from social care has been evident since the NHS was founded. Healthcare was and still is free at the point of delivery, but social services and social support resources are graded according to a person’s financial resources; they are means-tested. When I trained, patients could go to a convalescent hospital to recover from an illness, which was free. Initially, nursing home care was also free, but the considerable cost forced a reconsideration, and eventually, the concept of social care emerged.
The problem is obvious. If free care is only given for investigations and treatments that relate exclusively to disease, then one has a potential conceptual divide. Even then, the status of psychologically-based illnesses, such as depression and anxiety, would cause great arguments. Further, the patient would pay for social care in the hospital, bed, food, help with activities, and possibly intensive care, which would also lead to arguments. There is no other logical basis for the distinction.
The continuing healthcare criteria are fundamentally focused on cost, although they are presented as based on medical, health-related factors. For example, I have cared for patients with Huntington’s disease who were given continuing healthcare funding for some years but then had it withdrawn. It does not reverse as a condition, and the medical losses worsen over time. The care costs had not lessened. I can only conclude that the health system had increased the threshold of the money it would provide.
The situation is summarised well by Beacon (Ethical Legal Services Ltd), who write, “The Continuing Healthcare system is complex, dogged by lack of a clarity and understanding, and wildly inconsistent across regions. Patients and professionals alike find it extremely difficult to navigate.”
This seminar was not directly concerned with complex issues of funding. It was considering Social Care research. I was interested to know whether there was any conceptual divide between social care research and healthcare (rehabilitation) research.
The Social Care Research seminar
The speakers in this seminar all made the same points: social care is complex because of the fragmentation of budgets and organisations; there is a severe lack of resources and a great need for research; political indecision and unwillingness to act blights service delivery and development; and so.
Change social care to rehabilitation, and every sentence would still have been true. I felt at home! (And, of course, I was at home; it was a virtual meeting on Zoom that was flawless in its organisation and use of technology.) I have written about and illustrated the lack of a coherent structure of rehabilitation services. The same problems afflict social care services.
I will now summarise what the four speakers said.
The first speaker, Luke Geoghegan from the British Association of Social Workers, drew attention to a problem I knew about but had under-rated. He pointed out that much (social work) research needed to give more information about the context in which the research was conducted. Further, he pointed out that much (social work) research had multiple assumptions about the reader’s values, approach to clients, and understanding.
This is a pertinent, important point. I recognise it, sometimes, in papers submitted to Clinical Rehabilitation. One trivial example concerns research from the UK. Authors refer to research being ‘carried out in a Trust’. Many readers in the UK might well be puzzled, and no one outside the UK would know what ‘a Trust’ means and would not understand that a ‘Trust’ is a hospital.
His plea was to make all assumptions explicit. I agree, except that there is a practical problem. There are so many contextual factors that might influence research, and many others about the clinical context, that one could not cover them all. In his talk, he considered the culture and values embedded within the services being researched.
The culture and values also apply to the researchers if they come from the service. Other contextual matters include the funding arrangements, where significant differences exist between the United States and Europe and a host of cultural assumptions held by the patients (clients) receiving personal services that cannot be described.
The second speaker was Andrew Dilnot, chair of the commission, which wrote Fairer Care Funding. The Report of the Commission on Funding of Care and Support. (July 2011). He primarily considered older people, pointing out that many more people now lived with several long-term conditions.
However, he raised a significant doubt, indirectly and possibly missed by some of the audience: the apparent increase in patients with multiple long-term conditions may arise from changes in clinical data coding and better data. For example, I have a ruptured tendon in one hand and osteoarthritis of the hip. Do I have two long-term conditions? I would not think so, but my medical record might.
A second point raised was that most of the cost of social care arose from a minority of people. In this context, I learned some fascinating facts. Winston Churchill was friends with William Beveridge (the Beveridge Report). On 21st March 1943, Churchill committed the government to provide health and social care to all, saying that “the magic of averages come to the rescue of the masses“. He is referring to social insurance; taxation of all will mean that no one has to worry, though most people will not need it.
The magic happened for health but still has not occurred for Social Care. And the Tory party seems to need to remember its pledge from 1943. They have forgotten the promise of their Prime Minister in 2019; “In his first speech as prime minister, Boris Johnson promised to ‘fix the crisis in social care once and for all’. “
His third point was that there is no ‘market’ for social care, and there is no explicit goal or outcome set – or measured – so that we can judge the success of social care.
The third speaker was Martin Knapp, who gave an excellent exposition of the complexity of service organisation and delivery. His slides, a beautiful presentation of the fragmented world faced by patients or social work clients, run through many challenges that will resonate with all rehabilitation staff and people trying to find help for themselves or family members.
He stated that social care was distinguished from health care because it focused on well-being, not health. However, this is precisely what rehabilitation focuses on, and his distinction ironically proves the lack of differentiation between health (rehabilitation) and social care research.
He introduced me to a new journal (to me), the Journal of Long-Term Care. (here) It is an Open Access journal.
Last, he drew attention to the research resources of the National Institute for Health Research NIHR School for Social Care Research (SSCR), found here. They have a library of past webinars, which would be an excellent start for any rehabilitation researcher – here.
The last talk was by Laura Mason, who went through research funding opportunities, especially for Social Care research. There is money. Last year around £850,000 was not allocated as there were insufficient applications of good quality. Read her slides, and you will find more help applying for research funds.
Well before I knew of this seminar, I had accidentally been writing about matters that would easily fall into Social Care, though I wrote them for a rehabilitation readership.
I have stressed in several posts that rehabilitation is concerned with a person’s social functioning, suggesting that reducing loneliness might be a key outcome. (here) I have also highlighted the overlap of agencies concerned with important rehabilitation outcomes, suggesting rehabilitation is a ‘social service’. (here) Much of the social care budget goes to nursing homes. I have also highlighted an NHS document on nursing homes and how it offers an opportunity to improve patient care and rehabilitation services. (here) I have also stressed the fragmented nature of services (here), but my diagrams only show a part; now that I have seen those of Martin Knapp, I realise the problem is much more significant.
The comments above were written in May 2021. I have written many posts implying that rehabilitation and social care are indistinguishable. I had forgotten the words by Martin Knapp on the complexity of Social Care services, but they reinforce the need for a rehabilitation network in every Integrated Care system area. Social Care is just as complex as rehabilitation, and there is a significant overlap in services and functions. My post on complexity and the need for a network applies to social care as part of a rehabilitation network.
In 1943, William Beveridge and Winston Churchill recognised that Health and Social Care needed to be funded collectively. The decision after the war to have two different funding mechanisms, one universal and free, paid through general taxation, and one selective and means-tested, with only part paid through tax, has led to increasingly severe problems. This research seminar has accidentally demonstrated that social care and rehabilitation are not distinguishable, different services; they are two aspects of a broader social care system. Whatever funding mechanism is used must apply equally to all aspects of the social care system.