Memorandum by the Sainsbury Centre for
Mental Health (CVP 01)
INTRODUCTION
The Sainsbury Centre for Mental Health is an
independent mental health charity, working with the NHS and social
services across the UK to improve the quality of care they provide
to people with severe mental health problems.
Promoting choice and empowerment among service
users is at the centre of our work. We have championed changes
in policy and practice to bring this about in recent years. This
response draws upon our experiences of the reality of working
with a whole range of public services to promote the interests
of those with mental health problems. It follows the question
headings used in the Issues and Questions paper.
DEFINING WHAT
CHOICE MEANS
IN THE
PUBLIC SECTOR
The Sainsbury Centre for Mental Health broadly
welcomes the extension of choice in the NHS beyond acute hospital
services and into areas such as chronic illness and mental health.
There is no reason choice should be any less accessible for people
with mental health problems as for those with other illnesses.
However, choice in mental health care will inevitably be constructed
differently to other areas because, for example:
— Many people come into the system
compulsorily—they do not have an option of exit;
— Most services are organised geographically—community
services are limited to specific areas so choosing between them
is not an option.
For these reasons, in our response to "Fair
for all, personal to you", we set out what we believe are
the five key principles underlying choice in mental health care.
They are:
1. There must be a commitment to develop
the kinds of services users actually want. Choice should not be
about selecting from a set menu of existing services or alternative
suppliers of the same thing. It should be about redesigning services
around the stated wishes of those who use them and their carers.
2. Clear and accessible information is vital
for people to express and act upon their preferences. Services
have to ensure that there is provision for advocacy to support
to those who are using services. There have to mechanisms for
feedback on the acceptability and quality of services so that
there can be continuous improvement.
3. Choice and responsiveness must be available
from the point at which people first seek help for a mental health
problem. Many people currently wait for too long to get help.
Others find services unhelpful and do not seek help until they
are very ill.
4. People with mental health problems should
be enabled to exercise choice not merely in the kinds of treatment
they get but in the way they get back their lives. That means
offering people genuine choices about the support they get with
education and employment, social networks, housing and other aspects
of their lives that matter to them.
5. A commitment to equity requires a degree
of fairness between different health services. This implies a
reasonable commonality of standards in every dimension of the
patient experience both between as well as within services. This
underlines the need for substantial development in mental health
services.
THE CONCEPT
OF CUSTOMERS
IN PUBLIC
SERVICES
Even in mental health services, where much care
is provided compulsorily in secure hospitals and forensic units,
it is not impossible to empower service users sufficient that
they become, if not customers, clients of the service. Advance
directives, used increasingly in a range of public services, have
a lot of potential in mental health care given the episodic nature
of many mental health problems. Easy access to advocacy, especially
for people from disadvantaged groups and those in inpatient units,
is also a vital mechanism for the exercise of choice.
The concept of patient as customer has been
a driving force of the patient choice initiative in NHS elective
surgery—offering people who have waited too long for their
local hospital the opportunity to choose where they have their
operation. An equivalent system could be set up in mental health
care, where waiting times for services such as psychological therapy
and counselling remain very long. This would require the introduction
of a waiting list for such services.
MECHANISMS FOR
EXPRESSING CHOICE
It is vitally important that public services
involve and engage with people both as citizens and as service
users. In the case of the NHS, the public previously influenced
policy only through national Parliamentary elections. This has
been supplemented by the patient choice initiative, at the individual
level, and a number of reforms at the collective level including
the development of user involvement in service planning, the new
role of local authority overview and scrutiny committees in the
NHS and, soon, the creation of Foundation Trusts. Each of these
brings a different aspect of the public voice to services and
has its own, distinct value.
None are adequate on their own. This is why
SCMH supported moves to ensure Foundation Trusts were each required
to maintain a Patient's Forum as well as their boards of governors.
It will also be important for them to build on their growing connections
with local authorities, not to bypass them and focus only on their
own constituencies.
CHOICE AND
EQUITY
Simply creating the opportunity for clients
to have choice in public services is not enough to ensure it is
applied equitably. It requires fundamental changes to the way
those services work and investment in support systems to enable
people to make informed choices. Three connected types of action
are required to promote equity in choice:
1. Information provision: clear, accessible
information about the service, available both at the first point
of access (eg GP surgeries, A&E) and in other locations (eg
public libraries and the internet).
2. Workforce training and development: a
wide range of staff in public services need support to ensure
they are well equipped to explain what choices people have and
facilitate (not impose) their decision-making. A recognition that
clients' values may be different to their own is one important
facet of staff training in public services.
3. Advocacy: for disadvantaged groups in
particular, and mental health service users in general, advocacy
will be the key to accessing appropriate services and making choices.
For many people advocacy is the route to empowerment. But the
quality and quantity of advocacy available around the UK is patchy:
it requires considerable investment before we can be sure effective
advocacy is being offered equitably.
INFORMATION FOR
USERS
Satisfaction with services can be gauged in
a number of ways. In our experience of mental health services,
one of the most effective methods is by supporting groups of service
users to carry out their own evaluations. To this end, we developed
a methodology of User-Focused Monitoring (UFM). Through this method,
service users are offered the training and resources to carry
out research among their peers and gauge satisfaction with the
service. More details are available on the SCMH web site.
VOICE AND
PUBLIC SERVICES
Mental health services are often at the forefront
of efforts to involve service users in the public sector. An SCMH
survey last year of more than 300 service user groups in the UK
found that the majority are now actively involved in planning
and monitoring local services. There remain serious concerns about
their ability to do this—the majority of groups have very
little infrastructure and most rely on enthusiastic individuals
to meet the demands placed upon them. Investment in the capacty
of existing service user groups, as well as the creation of new
structures for user involvement, is essential for involvement
to be meaningful and effective. This is not unique to mental health
care though is probably better developed here than in many sectors.
DEVOLUTION AND
DIVERSITY
Increased diversity of provision is essential
for genuine choice. Mental health service users want not merely
access to medication and "talking therapies" but a whole
range of services from complementary therapies to advice on employment
and benefits.
The voluntary sector is often where innovations
in practice emerge. For people from some black and minority ethnic
communities in Britain, mental health services are experienced
as coercive and inhumane. Many people choose instead to look to
their own community groups to provide care and support. Numerous
African and Caribbean community groups and churches provide services
such as advocacy, help with finding a job, creative arts activities
or just somewhere to go where people feel safe.
The public sector could do more to support and
develop the role of voluntary and community groups. Secure funding
and help with core costs are all important. Without it, voluntary
groups cannot compete on a level playing field with public or
commercial providers.
Many voluntary groups provide both direct service
provision and an advocacy/campaigning role. This balance is important
to maximise the benefits they can bring to their communities and
client groups. It means developing a relationship which tolerates
such groups "speaking out" about problems while also
working on contracts with public services.
The Supporting People programme is also beginning
to encourage greater innovation in the provision of housing-related
care services. It would be a cause for concern if reductions in
the budget for Supporting People damaged the growing diversity
of these services, especially those run by the voluntary sector.
CAPACITY IN
THE PUBLIC
SERVICES
Increasing choice may, on some measures, reduce
efficiency within public services. It is inevitable, for example,
that some kind of spare capacity is needed within the system to
make choice work for users. But it is even more inefficient to
be providing services that people do not want or that do not benefit
them.
In move-on housing for people leaving mental
health hospitals, for example, choice is vital to ensure people
live somewhere that is appropriate to their needs (social and
cultural as well as medical) and located in an area where they
feel safe. Offering that choice depends on the following:
— A number of places being made available
from which to choose;
— A variety of places in existence
to meet diverse needs (eg for different religious groups);
— The chance to have a trial period
in a new home.
All of these conditions presuppose that there
is some degree of under-occupation of facilities and that public
services work together in a flexible way, around the needs of
the person. Although this has cost implications, without it choice
cannot be attained unless there are severe delays to discharges
from hospital (which is even more inefficient for the service
as well as being inappropriate for the client).
While some public services may need additional
capacity to facilitate choice, it is even more important that
they use their resources (staff included) more flexibly.
RAISING STANDARDS
If choice is implemented effectively, it can
have a dramatic impact on the quality of services. In the mental
health field, for example, this could be achieved in a number
of ways:
— Extending direct payments—enabling
individuals to influence what services are provided by purchasing
for themselves the services they find useful and appropriate;
— Widening person-centred planning—building
local services according to the collective wishes of service users:
a technique which has been implemented in learning disability
services and could be used elsewhere;
— Instituting user-focused monitoring—empowering
service users to carry out their own research into services, influencing
their development by collating their peers' views about what exists
currently and how it could be improved;
— Building up evidence—involving
service users in the work of inspectorates (eg The Healthcare
Commission) and best practice agencies (eg National Institute
for Clinical Excellence).
Such improvements are much needed. Many mental
health hospitals are located in outmoded Victorian buildings where
privacy is impossible, harassment is commonplace and facilities
are poor. No one would ever choose to be treated in such an environment.
In such cases genuine choice relies on the existence
of a better alternative to which public service clients have access
and where it leads to investment where clients have said it is
most needed. And it means that services which are not currently
receiving their fair share of resources will need to be targeted
to ensure that the choice initiative does not only benefit those
in the relatively well-resourced areas of the public sector.
April 2004
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