Government must let service users and carers shape social care policy

There can be no question that Theresa May’s disastrous social care manifesto policy played a major part in her election failure. However, the Queen’s speech suggests that she still far from finding a sustainable way forward for social care that will command popular support. The speech only included 14 vague and non-committal words on the subject: “My ministers will work to improve social care and bring forward proposals for consultation.”

Not only does this highlight the insecurity of her government and leadership. Much more importantly, it emphasises that any political party wanting to win the next general election will have to be prepared to listen carefully to service users and carers when developing their future social care policy proposals.

For all the talk of user involvement in health and social care, it hasn’t really happened in the past, but is clearly critical now. After the “dementia tax” debacle, no sensible politician is going to treat social care in such a cavalier fashion as May’s election team did. But taking it more seriously and giving it more priority is not enough on its own. Part of the problem has been that since Margaret Thatcher’s 1990 community care reforms, policymakers’ eyes have often been off the ball, because they have been at least as concerned with ideological commitments to privatising social care [pdf] as they have been with making it workable for people.

Thus the failure of prevention and personal budget policies and the continuing over-high levels of institutionalisation among older and disabled people. While there has been a lot of talk about the need to “integrate” health and social care policies, the same has conspicuously not been true of welfare reform and social care, with the former increasingly taking money away from disabled people and other long-term service users and making their lives more precarious, damaged and dependent.

The abrupt ending of a majority Conservative government committed to austerity and neoliberal small state politics creates a new opportunity to listen to service users and user-led organisations, as well as emphasising the critical importance of doing so. They have long been the most creative and innovative social care thinkers.

First they have repeatedly stressed the importance of putting social care on the same financial footing as the NHS if it is to meet the needs of the UK’s demography, which includes much greater numbers and proportions of older and disabled people. A diverse range of service users were brought together by Shaping Our Lives, supported by the Joseph Rowntree Foundation in 2009, to explore proposals for funding social care for the future. They felt that a false divide between social care and health care was perpetuated by conflicting funding arrangements. Almost all thought general taxation was the best way to fund social care.

But this is only the beginning of the story. Social care service users – including people with learning disabilities, sensory and physical impairments and long-term conditions, as well as mental health service users – all stress that a much more social approach to care (and welfare benefits too) is needed. It should get beyond individual medical conditions and see beyond pathologising the individual for what they can’t do and support them to do all they may be able to. Our health and social care systems don’t currently do this. They don’t come in to help to maximise people’s opportunities to contribute – through work, family, involvement in their community – only when they judge they “can’t manage” any more.

For years the disabled people’s movement has tried to change our understanding of “independent living” from a traditional idea of “standing on your own two feet”, to having support to live life on as equal terms as possible with other people. But still our health and social care system are stuck in the past. The political party that wins the next general election is likely to be the one that signs up to this new vision of social care and support. And that will be the party that really does its homework, stops prevaricating, listens to service users and carers and their organisations and involves them fully and equally in its policy process.