Social care service users feel excluded from reform debate

New research for the Joseph Rowntree Foundation asked about the state of the social care system and government reform plans

Social care service users have not got the ear of government, says Peter Beresford.

As the government finalises the social care white paper it plans to publish this spring, service users in a national consultation commissioned by the Joseph Rowntree Foundation have expressed major concerns both about the present state of social care and government proposals for the future.

There are growing fears among older and disabled people and other service users that their voices are not being heard at a time when major reforms in social policy that affect them in particular are taking place. While it is important not to overstate the case from the relatively small number of people consulted, they do represent a diverse range of adult social care service users from different areas in England.

The service users report a social care system that after several years of reform remains far from being fit for purpose. Those consulted value the commitment of many care workers, but generally feel the workforce is patchy, under pressure, and unsuited to delivering quality support. They raise concerns about the progress of personalisation and personal budgets. They feel these are being derailed by public spending cuts, poor preparation and inadequate support infrastructure. Some describe a mismatch between the current social care market and person-centred support. They say that early intervention and preventive policy is being increasingly undermined by underfunding, rationing policies, means testing and needs testing.

Many are strongly opposed to increasing the role of the private sector in social care, especially the role of financial services. The private sector’s profit focus is felt to be at odds with a focus on quality care. The legacy of the failure of Southern Cross and the scandal of Winterbourne View remains strong in service users’ minds. Almost all those consulted strongly reject the Dilnot partnership funding recommendations as unfair, unsustainable, flawed and ignoring service users’ views. They recommend that social care should be publicly funded and accessed in the same way as the NHS, through general taxation.

However, perhaps most important and most timely are the views of service users consulted about “integration”. The government has increasingly stressed the centrality of NHS and social care integration for its white paper. But for service users, integration is a complex matter and not merely a matter of top-down reorganisation. They worry about it resulting in a narrow, more medicalised approach and highlight the need for change at every level and including changes in culture and relationships between different sectors and staff. Some see integration as only achieved through the integration of health and social care funding and organisation. As one service user said:

They need to be linked at every level, from bottom-up and top-down. Better support for multi-disciplinary working, but most of all they need to be funded and organised on the same basis.

But most of all, service users consulted recommend seeing integration as a much wider issue, including other services, like housing, education, equipment services, transport and leisure.

Health and social care is too narrow a field; well being should be king. All environmental and wellbeing services such as housing, transport, education, training and the quality of ‘open space’ beyond the home have a major impact on the person’s quality of life; as does employment opportunity.

However, they see current spending cuts as undermining rather than enhancing the prospects for such integration. Everyone in the consultation reported the damaging effects of public spending cuts on themselves and other disabled people and service users, as services and support are further restricted.

Service users who were consulted also found it difficult to address social care reform without taking account of welfare reform. They feel the debates about welfare reform are having a corrosive effect, stereotyping people as “scroungers” or “a drain on society”. This is resulting among service users in rising anxiety, despair, feeling scared, insecure and vulnerable, even suicidal. As one disabled person put it:

Disabled people are feeling suicidal because of the new tests for ESA (employment and support allowance) and DLA (disability living allowance). When an Atos employee asks [during a review], “How long have you had cerebral palsy?”, I can see why.

Throughout the consultation, service users raise the issue of improving user involvement in social care. Despite the official rhetoric, they feel it is still largely failing. Many are worried about the effect of spending cuts in undermining user involvement and the capacity of user-led organisations at a time of growing need and crisis. They recommend that effective user involvement should be seen as a central part of transforming all areas of adult social care. This has long been the political rhetoric. The social care white paper faces the more difficult task of beginning to make it real.

Peter Beresford is professor of social policy at Brunel University and is co-author of the Joseph Rowntree Foundation report Caring For Our Future: What service users say

This article is published by Guardian Professional. Join the social care network to receive regular emails and exclusive offers