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Users, carers and the wider public are just as important to the real picture of long-term care provision and funding as local authority and NHS commissioners. So co-ordination is about more than agency structures, says Savitri Hensman.

Though partnership and involvement are much-used words, in practice community care may seem to be more about struggling to meet urgent needs, achieve goals, abide by standards and stay within budget. But alliances among people needing care, carers and the voluntary and statutory sectors may be crucial in tackling the problems that exist and achieving a better quality of life for people requiring long-term support.

Social services and the NHS are under severe strain. Central government wants them to work more closely together, transform their structures and improve services, despite severe resource shortages. Owing to changes in the population and society, need has risen greatly in recent decades, but this has not been matched by government spending.

National policy and legislation are strengthening users' and carers' rights and forcing up standards of care. Statutory authorities are now also expected to increase user and carer involvement and public accountability and strengthen partnerships with the voluntary sector. These may seem like further, excessive demands or, more positively, aspects of improving customer satisfaction and public relations. Yet users, carers, community groups and other voluntary organisations play a critical part in supplying, as well as drawing on, resources. And as more users gain control over their care, and wish to participate more fully in the community, old models of provision are not sufficient.

Long-term support needs are met in diverse ways, with funding or care from various sources, but much official literature focuses on the role of local authority and NHS commissioners. They are expected to commission care from statutory, voluntary or private providers, depending on who can offer the best and most appropriate services within available resources. But, as many of those involved are well aware, and national policy documents recognise at least in principle, reality is more complex.

Services are required to meet different levels of need across a spectrum from low to very high, and the focus may be prevention, care or rehabilitation or a combination of these. Often, different sources tend to resource different types of service, but distinctions are not rigid. Resources as well as support may be given by users and carers, as well as the wider public through central and local government, donations of time and money to charity and in other ways, though some agencies and individuals are exclusively funders or providers (see figure 1).

A few facts and figures give some idea of the scale of different contributions. It was estimated in the late 1990s that (at 1995-6 prices) expenditure on long-term care for older people, the largest care group, included £2.6 billion from the NHS, £4.5 billion from personal social services and £4 billion from individuals.¹ This did not take into account the financial value of the time spent by individuals on meeting their own care needs.

An estimate of spending on domiciliary care and community health for adults includes informal care to a value of £22 billion, as well as £4.8 billion from the NHS and local authorities and £6.3 billion from private sources.² Forty-six per cent of the income of UK voluntary organisations, which spend an estimated £13.4 billion, is from voluntary sources such as donations. Volunteer work is worth another £7.9 billion or so, much of it directed towards the wellbeing of people with long-term care needs. So users, carers and the voluntary sector are major players in the care economy.³

But sometimes they are treated by statutory authorities as junior partners or insignificant, and marginalised in joint planning. Individuals and voluntary organisations must make their own choices. However, it would seem sensible for councils and NHS commissioners to improve co-ordination with each other and with other partners to make best use of the resources and opportunities available.

Care services are connected with one another and the outside world. A frail pensioner may lose independence if opportunities to stay active cannot be accessed; an occasional break and basic information may enable a carer to continue providing valuable support. Through developing greater understanding of what others contribute, those involved in arranging and providing care can better assist one another and avoid working at cross-purposes.

Partnership on the basis of equality is not always easy to achieve. But it can bring about a better quality of life for people in need, their families, friends and wider community. An over-centralised approach to joint working is unlikely to succeed. There are obvious differences in how planning is carried out and support provided, and differences in influences and constraints. How the world is perceived may vary greatly even between disabled people and carers.

Language can be a cause of confusion as well. For instance, to some people the very term care seems patronising, while others want to use it more widely in workplace and society as well as caregiver-client relationships.

Barriers of gender, class and ethnicity and occasionally sexuality may exist, and care professionals may be influenced by society's prejudices, often unconsciously, while people needing care, carers and groups in turn may have preconceptions about public service workers.

Conflict is likely, both associated with care and otherwise. This should not rule out acting jointly on issues where there is agreement - indeed conflict, handled well, may strengthen relationships - but individuals and organisations under pressure can become defensive, and the widespread belief that services are strengthened by silencing dissent can make co-operation difficult.

But if obstacles can be overcome, there are many ways in which users, carers and the voluntary sector can co-operate in reducing the level of need and increasing and making better use of resources (see figure 2). Approaches will vary from one area to another; there is much that can be learned from existing partnerships, often on the frontline. Sustainable development builds on the experience of people needing care and others who make the system work, and on what they wish to achieve, their preferred ways of learning and getting support, taking the wider context into account.

Alliances based on respect for the skills and knowledge that different partners bring, and willingness to learn and grow together, are likely to become more important. Together, organisations and individuals can more powerfully challenge the prejudice and discrimination which cut so many people off from communities, leave them reliant on specialist services for needs which could be met elsewhere and make it socially acceptable to underfund long-term care.

¹ Royal Commission on Long Term Care, With Respect to Old Age, Stationery Office 1999

² Domiciliary Care Markets, Laing and Buisson, 2000

³ A Passey et al, The UK Voluntary Sector Almanac, NCVO Publications, 2000

Savitri Hensman is co-ordinator of community care and health development services at Voluntary Action Haringey, a local Council for Voluntary Service.