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Boris Johnson has claimed that his government’s broken manifesto pledge of a planned health and social care levy will remove the threat of ‘catastrophic’ care costs. Although the prime minister incorrectly stated in September that the levy would mean ‘nobody has to pay anything’ for means tested care up to £100,000, many people will still need to fund their own social care, while those in later life with low pensions and savings may need to sell their property to do so. Ten Tory MPs rebelled by voting against the government’s proposals, and the chair of the Health and Social Care Select Committee, Jeremy Hunt, has argued that social care won’t get the money it needs. Although a growing movement of people believe that there should be a much broader conversation about the future of social care, rather than ‘tweaking with the floor and cap of an individual’s contributions’, the dominant narrative has been around funding for social care, and who will bear the costs.

Despite the attention-grabbing headlines, it’s been argued that extra funding through increased national insurance contributions won’t fix the social care crisis and, even with an £86,000 limit on what an individual will pay for care (daily living costs are excluded), some people will continue to pay independent providers for their care needs. If not catastrophic, for many people a social care bill of £86,000 will feel hugely expensive, and the fear of later life care cost will remain.

Older people who are not eligible for local authority funding are known as ‘self-funders’. Where legislation refers to self-funders there has tended to be a focus on personalisation and choice, with the implicit assumption that self-funders will feel empowered by increased levels of control over their spending. However, social care is complex and experiences of self-funders are mixed. There is so much information available that some self-funders, rather than feelings of empowerment, report feeling overwhelmed; unable to find the right information; and not sure who to turn to for advice.

Louise Overton and I are currently working on a timely project that is a collaboration with University of York and University of Manchester which aims to develop a decision support tool for self-funders of social care. We are interested in ways that the tool could help older self-funders to feel more confident in making decisions about paying for care.  People making similarly complex decisions related to their health care options are often encouraged to engage in shared decision-making processes, which can be assisted by a decision aid (also known as a decision support tool). These tools are designed to support the decision-making process by providing information on available choices, while also encouraging people to consider any risks or benefits related to their decision.

The decision support tool is likely to be an online resource and will be co-designed with all stake holders being actively involved in the research. The project will be conducted in four stages:

  1. To help shape the decision tool and decide what to include, we are conducting a literature review, along with a secondary analysis of interviews from earlier studies. We are consulting with key practitioners from adult social care and related sectors that we know self-funders turn to for advice and information (such as professionals from local councils, voluntary organisations and legal and financial services).
  2. To develop an initial version of the tool we are running co-designed workshops. Participants of the workshops will be self-funders and/or their families and professionals working in adult social care and related sectors.
  3. To improve on the initial version of the tool we will ask people who pay for care, their relatives and key professionals to use it and provide feedback.
  4. The improved version of the tool will be piloted by the Money and Pensions Service (MAPS) and the people who contact them for advice about paying for care.

With public involvement at the forefront of this project, we are also asking members of the general public who have interest in, or experience of, paying for social care to help guide this project. Further information about the project can be found here.

Although we recognise that the development of a decision support tool won’t resolve the broader issues around the social care system in England, we hope that it will help to address some of the uncertainty that older self-funders and their families face by supporting them to learn about the options available in paying for care and to consider personal preferences, values and goals throughout the decision-making process.

Find Maxine on the University website here.  Follow Maxine on Twitter @drwatkinsmaxine.