Mental health policy and practice across Europe: an overview

The user and survivor movement 349
So, is it important whether groups are user-controlled or not? Those who say
it is make the argument from experience. Only users know what it is like to be
on the receiving end of psychiatric services and to experience mental distress.
Therefore, only users can understand the situation of their fellows and are
thereby enabled to engage in collective action. However, others believe that
there is a role for non-users, especially when an organization is developing.
They argue that people who use mental health services, especially those confined
to hospital or residential care for long periods of time, do not have much
experience of creating and running organizations and therefore may need help,
at least in the beginning.
User-led research
We have not attempted here to collect information on the role of user groups
in research across Europe. Evaluation of all interventions, including user-led
projects is crucial, and it is important to briefly highlight the contribution that
can be made by user-researchers. Service users are beginning to play a role in
the area of research, most notably in the United Kingdom, where policy guidance
recommends user involvement in the research process. On the ground,
however, there may be tension, power differentials and suspicion between clinicians
and professional researchers (who may have a narrow medical focus and
misgivings about user-researchers’ skills), and the broader perspective of user
researchers.
Evidence is beginning to emerge on the contribution of user involvement to
research, which shows that it can positively influence the content of research
projects. User-researchers may ask different questions and obtain different
responses to research conducted by professionals. User-researchers are more
likely, for instance, to be interested in how interventions are delivered and
what their impact is on individual empowerment (Trivedi and Wykes 2002;
Chamberlin 2005).
Important outcomes of an intervention may be more apparent to a service
user than to professionals; for instance, one study looking at how the work of
different professionals working with a service user is coordinated concluded
that this did not lead to greater involvement or awareness among service users
(Rose 2003). Outcomes regarding advocacy, being listened to and having an
opportunity to contribute to meetings were things that were overlooked by
professionals but were important to service users, and had important implications
for the success of the intervention.
User-researchers’ understanding of an issue may also lead to alternative explanations
of why things do or do not work and their impact on quality of life
(Faulkner and Thomas 2002). One example of how such important insights
into quality of life may be identified comes from a recent user-researcher-led
systematic review of patient perspectives on electroconvulsive therapy (ECT)
(Rose et al. 2003). This review examined the differences between measures of
effectiveness and efficacy reported in the clinical literature and user satisfaction
with treatment. User-led studies reported significantly less benefit than
clinician-led studies; this, it was argued, may be due to clinical studies obtaining