Getting informed, getting prepared: Understanding care and support for older people
In the United Kingdom, health and social care are organised and funded very differently. Unlike health care, which is free at the point of service, social care is often funded by the person who requires it.
Local councils cover the cost for some people, but the majority of people are required to make a contribution to their own care. Those who have assets of over £23,250 are expected to pay in full, and are known as self-funders.
Unlike the NHS, people tend to know very little about the social care system and only learn about it when they need it. Despite best intentions, information services can use language that is unfamiliar to the general public and, instead of feeling empowered and knowledgeable about care options, people often end up feeling overwhelmed and confused (Baxter K and Glendinning C, 2015).
At the Social Policy Research Unit at the University of York we have recently been researching how self-funders access information about social care, and as part of our work have produced a new online resource called ‘Getting Informed’. It contains a short film and written information to help older people and their relatives understand what social care is all about and how to find out more.
Although people who self-fund have been around for a long time we still do not know a lot about them or their experiences. What evidence there is suggests that they struggle to find relevant information, don’t know where to look for it and don’t know what to look for.
The Care Act 2014 acknowledged these difficulties by making it mandatory for local councils to establish and maintain information and advice services about social care for all their populations - self-funders as well as people who are council funded. In 2015-16, a national social care research funding body called the National Institute for Health Research School for Social Care Research (NIHR SSCR) funded us to do research on self-funders’ experiences of seeking information about social care.
The research we carried out involved speaking to older self-funders and their relatives across England - and to the people they approach for information and advice about social care. These included local council contact centres, community-based social workers, hospital-based social workers and other discharge staff, advisers from voluntary organisations, managers of care homes and home care agencies, and GPs.
We found that advisers from local councils sometimes felt guilty for having only limited time to spend with self-funders. Meanwhile, GPs confessed to being under-informed at times about the social care services available or appropriate information for patients seeking advice. The self-funders and relatives we spoke to said they wanted simple information about taking those very first steps to finding out about care.
After doing the interviews, we held two workshops. One was with some of the self-funders and relatives we had spoken with. The other was with practitioners we had spoken to and other practitioners who were new to the project. In the workshops, we talked about the study findings and discussed what basic information we could produce to help people to ‘get informed and get prepared’ for seeking social care for themselves or an older relative.
The film aims to help older people and their relatives get started on the search for information about care and support. It tells ‘Heather’s story’ of finding information about care for her husband, and makes suggestions about other ways people might go about finding care. The leaflet includes simple, jargon-free information about starting to look for care, getting the right support and places that can help.
We are hoping that these open access resources, that are available to everyone, will provide answers to those who require information about social care, and support them as effectively as possible with their next steps.
About the author
Kate Baxter is a researcher at the Social Policy Research Unit at the University of York.
Baxter K, Heavey, E & Birks, Y (2017) Older self-funders and their information needs. National Institute for Health Research: School for Social Care Research. Available online: http://www.sscr.nihr.ac.uk/PDF/Findings/RF62.pdf
Baxter K and Glendinning C (2015) People who fund their own social care. SSCR Scoping Review, National Institute for Health Research: School for Social Care Research. Available online: https://www.york.ac.uk/inst/spru/pubs/pdf/sscrSelfFundSR11.pdf
This research was funded by the NIHR School for Social Care Research. It was carried out with colleagues Emily Heavey and Yvonne Birks from the Social Policy Research Unit at the University of York (see Baxter, Heavey and Birks, 2017).