Mental health policy and practice across Europe: an overview

348 Mental health policy and practice
the United Kingdom on the one hand and Sweden on the other. In the United
Kingdom, early national groups, including Survivors Speak Out, were not useronly
groups as they admitted ‘allies’ as members. Gradually, the role of these
allies diminished. Again, early local user groups in the United Kingdom tended
to be alliances of users, families and professionals. Later, a ‘user group’ came to
be defined as a group where decision-making is solely in the hands of users and
indeed most user groups today are user-only. The main user group, RSMH in
Sweden, can be used to illustrate a different pattern of development. The organization
was founded by users in the 1960s. It quickly admitted sympathetic
professionals as members and there were many of these as a result of the revolutionary
events of May 1968. Subsequently, the radicalization of society abated
and RSMH became more like a user-only group again. However, the group continued
to receive substantial funding from the Swedish government, including
subsidized salaries for workers. However, the biggest problem for RSMH today is
that the national office is very strong with 20 to 25 paid workers, but they are all
professionals. Nominally, there is a board of service users that directs this group
of staff but, according to the reply we received to our internet questionnaire,
this arrangement appears not to be working at all well.
Many groups in western Europe also contain family members. This can cause
friction as the interests of users and relatives are not always the same. (Familyonly
groups have also emerged and are discussed in Chapter 16.) In mixed
groups, relatives often dominate. In fact, this is clearest in the United States
where user groups are very critical of the powerful relatives’ organization, the
National Alliance for the Mentally Ill (NAMI). This organization receives funding
from the pharmaceutical industry and favours more coercive measures for
users.
There are relatively few completely user-controlled groups in eastern Europe
and in the new EU member states. Those that do exist in Bulgaria, Lithuania,
Estonia, Ukraine, Georgia, Romania and Poland, for example, all have professional
‘allies’ who offer some kind of support, usually on request. There is no
state support for user-led services or even for involving users in planning or
managing services anywhere. On a more positive note, with some persuasion
from organized user groups, there is now a growing acceptance of the need to
listen to the voice of the user.
Looking at the experiences of the user-led groups in the Hamlet Trust’s
network, many remain fragile and depend on the strength of a few individuals
and, as everywhere, are vulnerable to crises. In comparison to non-user led
groups they find it hard to obtain funding as they have little access to formal
structures and information, and have fewer resources. Many of the groups in the
Hamlet network were, in fact, established by professionals willing to encourage
users either to take part or move out and establish their own independent
groups. These (mostly young) professionals recognized that the only way that
they are going to generate change is to move outside the psychiatric system and
be willing to share what little resources and power they have. However, there
is still a lot of suspicion about the viability of user-led activities, which is only
exacerbated by the crises that inevitably occur. These then tend to be seen
as proof that such groups cannot work rather than being seen a part of the
everyday life faced by all organizations.