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.