Unforgotten: the people, lost and found, in receipt of social care

28th May 2020 about a 6 minute read

Annemarie Naylor and Josefine Magnusson

The public health emergency continues to shine a light on what we know and, more importantly, do not know about social care. Social care is amongst the thorniest of domestic policy challenges facing the United Kingdom and, yet, garnering any kind of understanding of it involves a level of detective work that, all too often, leads to a dead-end or cold trail.

It is a subject that we have written about extensively over the last couple of years. We have explored the risks and opportunities that different parts of the country face in planning and managing adult social care provision. We have examined structural changes to the residential care home market in England and gaps in our understanding about the quality of provision, as well as undertaking a deep-dive into the financial stability of residential care providers. We have, also, analysed the approach taken to and funds disbursed by Local Authorities to secure care for people with broad-ranging needs. In each instance, we have had to grapple with the lack of standardisation and relative paucity of information made publicly available. We have, more recently, had to resort to the deployment of novel research methods, and we have become increasingly reliant upon use of the Freedom of Information Act (2000) in our efforts to understand what is happening in social care.

Now, in the midst of a crisis, whether you are a Minister, an official working in local or central government, a scientist, a medical or social care professional – let alone an anxious family member – it is all too clear that you are hampered when trying to make sense of what has happened (and continues to happen) to people in receipt of care. The Secretary of State for Health and Social Care, Matt Hancock, recently acknowledged as much and, in his response to an Urgent Question posed by the Shadow Care Minister, said:

“…we are requiring much better data from social care, because partial data has bedevilled the management of social care for many years and made ​policy-making more difficult. Regular information returns are required in return for the latest funding, and we are looking to change the regulations to require data returns from every care provider, so that we can better prepare and support social care.”

This is, potentially, welcome news if it reflects our call for the introduction of a Digital Duty of Care and applies to the full range of social care services, so that everyone in receipt of care benefits from the improvements that we hope will result. It is, however, tragic that changes are being made now when so many in receipt of care have sadly lost their lives: #DataSavesLives

What do we know?

Our own work has made extensive use of publicly available data and, to help others, we have produced a Social Care Data Finder which comprises of a timeline with links to social care datasets that have been openly published in the UK since January 1st 2020. The aim is to maintain a data finder that can be used as a resource for social care research, so the timeline will be updated at regular intervals to capture the publication of new datasets and we welcome suggestions for inclusion. At present, our Social Care Data Finder serves as a portal to data published by pertinent national bodies, but we will move to incorporate local datasets and others in due course.

What this first iteration makes plain is that there isn’t a great deal of publicly available data concerning social care – which the Office for Statistics Regulation’s England-wide Review of Social Care Statistics, published in January, underlined – and that much of the information that does exist has since been generated in response to extraordinary circumstances. It is also important to recognise that, too often, the data we have analysed does not give rise to what is really sought-after: namely, insight.

As such, it is helpful to briefly consider some of the things that we don’t know.

What don’t we know?

There’s a great deal that we don’t know about social care and there isn’t space enough here to explore this question at length, although readers are encouraged to read our reports which explore some of the gaps in-depth. But, in thinking about the emails and calls I’ve received in recent weeks, a number of issues flowing from the pandemic come to mind:

  • Is the data being published about deaths amongst people in receipt of social care comprehensive/instructive? We’ve heard a great deal about care homes, but how does the data published by the ONS and CQC help us to understand what has happened to the people living and working in them? How is it helping us to quickly identify and disseminate good practice?
  • What is happening to people who provide or rely upon domiciliary care?
  • Has anyone published comprehensive or useful data about the impact of the pandemic upon people with disabilities and learning disabilities? Do we know what has and is happening to them? Are they lost or found in data about their propensity to contract the virus, in data about ICU attendance, in recovery statistics or in data about deaths amongst people living at home? What has been the impact of the pandemic, to date, upon people faced with different mental health challenges?
  • Are there access issues for some (or all) groups in receipt of social care where testing is concerned? Is it feasible to undertake an analysis of the testing regime from the point of view of accessibility and/or to understand whether and why some service user groups might be less likely to get tested?

These are things we don’t know now – things that are, potentially, life-critical in the context of the ongoing public health emergency. There is, however, so much more we don’t know about commissioner and provider activity and, crucially, the social care workforce in ‘normal circumstances.’

What do we need to know?

Calls for the publication of social care data should flow from an understanding of what problems we need it to solve – to understand them better, we need input from policy makers, commissioners, providers and innovators as well as, crucially, service-users themselves. This is why we have joined forces with the Health Foundation to invite broad-ranging stakeholders to help us Strengthen Social Care Analytics over the weeks and months ahead.

We want to know what more can be done using social care data to improve services and outcomes for individuals. We are determined that our beneficiaries be unforgotten – that the people whose lived experience and, tragically in too many instances, whose lives have been lost are found.

  • Future Care Capital - Social Care Data Finder (May 2020)
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