This study examined people's perceptions and behaviours in relation to planning for their social care needs, and their values and priorities concerning how social care should be funded. Eight deliberative focus groups were conducted in May 2018 with 53 participants, aged 25-82 years, in London, Manchester and rural locations near York and Sheffield. Multiple uncertainties created barriers to planning for social care needs including not knowing how much to save, not thinking it possible for an average person to save enough to meet significant needs, reluctance to plan for something potentially unnecessary, lack of suitable and secure ways of saving, and a perception of social care policy as unsettled. Participants also had significant concerns that they would not be able to obtain good-quality care, regardless of resources. In addition, it was commonly thought unrealistic to expect families to provide more than low-intensity, supplementary care, while use of housing assets to pay for care was considered unfair, both for home-owners who could lose their assets and non-home-owners who were left reliant on the state although it was more acceptable where people were childless or had substantial assets. Participants thought any new arrangements should be inclusive, personally affordable, sustainable, transparent, good-quality and honest. They preferred to contribute regularly rather than find considerable sums of money at times of crisis, and preferred to risk-pool, with everyone obliged or heavily encouraged to contribute. Transparency was valued so those better at 'working the system' were not able to benefit unfairly and participants wanted to know that, if they contributed, they would be assured of good-quality care. Trust in Government and other institutions, however, was low. New funding arrangements should incorporate measures to increase transparency and trust, be clear about the responsibilities of individuals and the state, provide meaningful options to save, and place significant focus on improving actual and perceived care quality. For acceptability, proposals should be framed to emphasise their affective dimensions and positive values.
Keywords: chronic illness and disability; long-term care; paying for care; social care.
© 2019 John Wiley & Sons Ltd.