Equal but different

    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.

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