Rethink Policy Statement 20
Involving service users and carers in mental health services
Summary
Rethink believes that service users and informal carers have much to
contribute to mental health services though their experience, personally or in
a caring role. This expertise is not available from any other source. They
should be involved in:
§
Planning services
§
Running services
§
Training and education of mental health staff
§
Quality issues such as setting and monitoring
standards across all agencies providing services for people with a mental
illness.
§
Participation in and setting priorities for research.
1.
Definition of involvement
Involvement means
taking an active part in decision making through discussion and being listened
to. It is important that mental health services recognise, accept and value the
experience of people with severe mental illness and their informal carers.
They should be treated as equal
partners in the planning and delivery of care services, not just as recipients
of care. Service users may offer expertise in understanding what it is like to
experience a psychosis and use mental health services; informal carers offer
expertise in monitoring the health of people with severe mental illness and in
caring for them.
As new mental health services are
being planned or existing services reviewed, local service users and informal
carers can be invaluable to identify:
§
What is needed and what is not.
§
The profile and pattern of local services and how they
should be provided.
§
An appropriate direction for services eg, preventative
or crisis-based.
§
Where extra resources might be found to provide those
services.
It is difficult to change the
culture of mental health services, especially the view that the professional
knows best in the way services and personal care are planned, delivered and
evaluated. Commitment is needed from boards, top managers and senior professionals
of agencies to invest in change. This is highly likely to be in their interest
in terms of obtaining contracts from commissioners, many of whom look for
evidence of involvement in all areas of service provision.
2.
Supporting involvement
It is a prerequisite to effective
involvement that opportunities to be involved are accessible. It is important
that:
§
Meetings are held in places and at times convenient to
service users and informal carers.
§
Service users and informal carers are given advance
notice of meetings, and told who will be attending and what will be discussed.
§
Service users and informal carers are trained or
briefed so as to make an effective contribution eg, by the agencies involving
them.
Service users and informal carers
often find it difficult to engage with groups of professionals because of
problems with technical language and the level of discussion. It can be
difficult to be fully involved in meetings conducted in a formal manner with a
number of unknown people present[1]
3.
Creating opportunities for involvement
Service users and informal carers
should be involved as equal partners with professionals in:
§
Planning and reviewing mental health services.
§
Running the services they use, including devising
local policies.
§
Quality issues such as setting quality standards,
monitoring and evaluating services and local charters.
§
Recruitment and development of staff.
§
Delivery and evaluation of educational and training
programmes for staff, including managers, of agencies providing services for
people with a mental illness.
§
Contributing to the development of local and national
policies and procedures.
§
Local standing committees such as joint strategy
boards, Mental Health Review Tribunals and management boards of primary care
groups.
4.
Benefits
It had been shown that involvement
of service users and informal carers leads to:
§
More effective partnerships and improved relationships
between service users, informal carers and mental health staff.
§
Staff gaining a better understanding of the effects of
a severe mental illness on service users, their families and friends.
§
Better targeted services based on needs identified by
those using them.
§
Better ways of meeting needs, for example enabling
people to help others in the community rather than just being beneficiaries of
care, which is more effective than just dealing with crises.
§
A critical light being thrown on the effectiveness of
particular therapies.
Involvement is also likely to have a
positive impact on the self esteem of service users and informal carers, and
development of new skills.
5.
Costs
The main costs are likely to be for
travel, fees that may be paid eg, for giving a lecture and staff time taken in
involving service users and informal carers. These costs need to be set against
the benefits. Rethink believes that these benefits exceed the costs. Benefits
should not be seen solely in financial terms, but are likely to impact on
finance long term if outcomes for the service improve.
It is essential that service users
and carers receive payment for participation, as they are providing their time
and expertise. Rethink recommends referring to guidance on payment for
participation provided by the Department of Health[2].
Related
Rethink policies
1 Equal partnership in the personal care planning and
delivery of services for people with severe mental illness - 25
2 Carers
needs - 11
3 Empowering people with a severe
mental illness - 50
Last updated: January
2008