Major new report to reveal unfairness and myths for older people who fund their own social care

Funded by the Wellcome Trust – and led by the University of Brighton - 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.

The University of Brighton led the study, but worked in partnership with researchers at the University of Birmingham and University of Lincoln. 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.