Funded by the Wellcome Trust – and led by the University of Brighton but worked in partnership with researchers at the University of Birmingham and University of Lincoln - the new research puts the lived experience of older people at its heart, with case studies revealing a chasm between stated adult social care policy objectives and services received by older people purchasing their own care.
A host of damaging myths surround the cohort of self-funders - an increasing part of the social care landscape, yet largely ignored in policy debates. Key misconceptions tackled in the new research include:
- those who self-fund care in older age are well off;
- they require lower levels of care;
- they can arrange complex care packages, and dictate costs as 'consumers'.
Ever-tightening needs-based eligibility criteria plus fixed financial thresholds for local authority care has led to many older people having to source and pay for their own social care. Even those with complex needs can be left to navigate buying vital later life care in a fragmented and profit-driven system. Half the self-funders in the research were over 80 - and over a dozen died during the study.
Project's lead Dr Lizzie Ward - Principal Research Fellow at the University of Brighton's School of Applied Social Science – describes those self-funding elderly care as “the invisible lynchpin of the social care system characterised by fragile care markets and insufficient public funding.”
“Without access to appropriate advice and support about purchasing care older people face a number of potential risks to their health and wellbeing, including the risk of their care needs not being adequately met, the risk of poor purchasing decisions with adverse financial implications, and the risk of exploitation or abuse.”
Dr Denise Tanner, Senior Lecturer in the Department of Social Work and Social Care at University of Birmingham added: “Paying for care is not only a big financial drain. The ‘work’ required to manage care takes a toll on the practical and emotional resources of older people, and their families too. Many of our participants felt great anxiety about what would happen when their money ran out, with some calculating how long they could afford to live.”
Mo Ray, Professor of Health and Social Care at the University of Lincoln, added further: “‘Our study shines a light on the day-to-day experiences of older people and unpaid carers who need to purchase care in the context of a complex and difficult care landscape.”
“Our recommendations highlight the need for a fundamental reform of social care which fully acknowledges and incorporates the needs of self-funders and addresses long-standing issues concerning the cost of care, its accessibility, quality and the value placed upon the social care workforce.”
The research also tackles issues faced by raft of stakeholders other than older people themselves, including family members, informal carers, professional care providers, health practitioners, and social care commissioners.
For further information and access to research findings, visit the Older People: Care and Self-funding Experiences website.
Launch time: 17 December from 11:00 - 13:00 on Zoom
Research partners, Dr Lizzie Ward (University of Brighton), Professor Mo Ray (University of Lincoln) and Dr Denise Tanner (University of Birmingham) will present key finding from the report Older People: Care and Self-funding Experiences with invited speakers and a Q and A session. There will also be an opportunity to hear from award-winning writer of non-fiction and fiction, Madeline Bunting, whose 2020 book Labours of Love, the Crisis of Care was longlisted for the Baillie Gifford Prize.
For more information or interviews, please contact: Hasan Salim Patel, Communications Manager (Arts, Law and Social Sciences) on +44 (0)121 415 8134 or contact the press office out of hours on +44 (0)7789 921 165
Or contact the University of Brighton: Norman Miller / +44 (0)7941 501 321 or Hassan Azam / +44 (0) 7958 515 509
University of Lincoln: Alistair Berry / +44 (0)1522 835 156
The University of Birmingham is ranked amongst the world’s top 100 institutions. Its work brings people from across the world to Birmingham, including researchers, teachers and more than 6,500 international students from over 150 countries.
The research was carried out over three years by of academics and lay co-researchers, including older citizens, at the University of Brighton, the University of Birmingham, and the University of Lincoln. It focused on ethical issues and the risks and responsibilities for everybody involved in the process of self-funding care - older people themselves, their family members and informal carers, care providers, practitioners, and social care commissioners.