Social care self-funders need help making choices

People who pay for their social care are often disadvantaged by a lack of guidance, says research published today. By Melanie Henwood

Growing numbers of people are paying for social care from their own (often modest) savings, either through personal choice or because they have assets above the mean-testing threshold for public funds. There should be some advantages to this. Surely “self-funders” are better able to exercise consumer power and get the support that they need, rather than simply accepting what is on offer? Yet research published today by the Putting People First Consortium and SCIE finds the reality to be more complex – and much less positive.

For some people, having adequate financial resources had enabled them to make considered and deliberate choices. For others, decisions about care had been accelerated or necessitated by changing circumstances, leaving them with little control over subsequent developments. When making vital (and often life-changing) decisions, people are most likely to consult family and friends. Few of the people interviewed considered approaching social services for help or advice. Typically this was viewed as stigmatising, something to be avoided or used only as a last resort.

Those who did approach the council frequently described being “given a list” of care homes with no other information or advice about care options. Carers and relatives described similar experiences, emphasising that the first and often only question they were asked about their relative’s situation concerned their financial status.

All councils have a responsibility to ensure that information and advice are available as “a universal service” for everyone needing care and support, whether they are using a personal budget or their own funds. The government’s vision for social care, published in November, also acknowledged “that people funding their own care have a particular need for information and guidance to help plan how their care needs are met”. It is apparent that many councils have a long way to go in ensuring that this universal service is adequate and accessible.

The term “self-funder” covers a wide range of situations – from people buying in a “little bit of help” in domestic or cleaning services, to those who pay for live-in full-time staff, and those buying care in a residential or nursing home. The typical self-funder, however, is an elderly person who experiences a crisis in their life (a fall, admission to hospital etc), often compounded by widowhood and sudden isolation. Few people plan for this eventuality, and are rarely well-informed about what they need, what is available to help them and how they might find it.

Paying for care and support does not automatically give people greater control over their situation, and meaningful choices are often lacking. While people had few expectations of their local council to provide them with any help, they also had little idea of where else to go for guidance in navigating the complex world of care and support.

There was a profound sense throughout the research of people undertaking major life journeys without the benefit of maps to guide them, and with no clear sense of their destination.

In many ways, people paying for themselves were considerably disadvantaged, relative to people qualifying for publicly funded support, by not having access to independent assessment of their needs (as opposed to their means), or to clear information about their options, and care advocacy to help them in achieving their preferences.

For people who were without a close family member to help them on their journey, the options were fewer still and the path a lonely and bewildering one to navigate.

• Melanie Henwood is an independent social care consultant