User Involvement ‐ A Contemporary Overview
| Pages | 6-12 |
| DOI | https://doi.org/10.1108/13619322200400003 |
| Date | 01 March 2004 |
| Published date | 01 March 2004 |
| Author | Toby Williamson |
| Subject Matter | Health & social care |
User Involvement –
A Contemporary Overview
Toby Williamson
Head of Policy
The Mental Health Foundation
Framework Feature
‘We all make history, but not under the conditions of our
own making’
Karl Marx (adapted).
The shift from passive recipient to active participant
among people who experience mental distress and
have contact with mental health services has been a
dramatic one over the last 20 years in Britain. A key
phrase, often heard in describing processes
inextricably linked to that shift, is ‘user involvement’.
This article attempts to give an overview of what user
involvement actually means in relation to the current
mental health system in Britain, and people’s
experience of having contact with that system. In
doing so, a number of unresolved issues are identified,
particularly relating to the question of how much can
it actually achieve and for whom?
Somewhat like a line out of the satirical school
history book, 1066 and All That, user involvement is
generally considered to be a Good Thing. Born out of
a general rise in consumerism and an increasing
confidence and ability among people in receipt of
mental health services to vocalise their dissatisfaction
with those services and their desire and ideas for
improving the mental health system, and an apparent
willingness on the part of government, as well as many
people working in the mental health system, to enable
people using the services to have a much more active
role in determining how the system works, user
involvement has been growing dramatically since the
old Victorian asylums began gradually to give way to
the policy of community care in the 1980s. This also
reflects a wider trend; in 2003 the government
established the Commission for Patient and Public
Involvement in Health to ensure that the public is
involved in decision making about health and the
provision of health services across both physical and
mental health needs. The Department of Health is
also currently undertaking a national consultation
aimed at patients and service users on choice,
responsiveness and equity in the NHS and in social
care – one of the key themes is mental health
(Department of Health, 2003).
Inextricably linked with user involvement in the
mental health field is the concept of ‘empowerment’,
reflecting the belief that genuine, meaningful
involvement would, both as a process and in its
outcomes, bring about positive change and
improvement for service users, both individually and
collectively, as well as for the mental health system
itself.
Yet underneath the glib assertion of user
involvement being a Good Thing, and the somewhat
broad definition of it that has just been given, both the
concept and the reality are significantly more complex.
The terminology alone can complicate things; many
people who have had contact with mental health
services as well as many who provide services are not
comfortable with the term ‘user’ for a number of
reasons. ‘Survivor’, ‘consumer’, ‘client’ and ‘patient’
are still preferred by many, denoting how they choose
to define themselves, or the person, in relation to their
mental health and/or the mental health system*. The
processes and the objectives of involvement mean that
it is not straightforward. Examination of these in more
detail gives a good sense of the complex and diverse
array of activities that can be included, and also where
potential or actual difficulties with user involvement
may lie.
Certainly since the advent of community care
policies in the 1980s and the development of the Care
Programme Approach (CPA) there has been
considerable emphasis placed on ensuring that
individual users are fully involved in the planning,
delivery and review of the care and treatment they
receive. Describing the CPA assessment process,
Department of Health guidance states that it ‘will
involve the user and the carer, where appropriate, as
central participants in the process’ (Department of
Health, 1999a). Phrases such as ‘user-centred’, ‘client-
6The Mental Health Review Volume 9 Issue 1 March 2004 ©Pavilion Publishing (Brighton) 2004
* For the purpose of this article, the term ‘user’ is generally utilised, though the author acknowledges its limitations in describing the
experiences of many people who have received or are receiving services.
J/205/01/04MHR9.1Marchinsides 3/3/04 10:33 am Page 6
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