An unscientific success

The National Service Framework for Mental Health requires that
people who use mental health services should be key partners in the
assessment, planning and implementation of those services. However,
it appears to be difficult to consult in a way that generates
improvements for users, as well as practicable, affordable options
for providers and commissioners.

Historically, professional research on mental health service users
is characterised by a lack of trust that what interviewees say is
what they really mean. The researcher applies various tests of
reliability and validity in order to get at the “objective truth”
behind the user’s words. What emerges often reflects the
researcher’s professional understanding of what mental health is
all about. Users’ views are redefined in terms of generic
constructs of mental health, diagnoses, treatments and
services.¹

On the other hand, user-led research approaches can be
circumscribed by a perceived need to be “scientific” in order to be
taken seriously. The same NSF that calls for user involvement also
prioritises types of research putting the use of systematic reviews
and randomised controlled trials at the top, and observational
studies and the views of users at the bottom. Yet a rigorous
application of method can stifle the individual user’s voice. The
findings produced by more scientific user-led research, often
presented as statistics, are relatively easy for the service
provider to work with, and in some cases have secured long-term
funding. However, recommendations tend to focus on improving
existing services, valuable as this might be, rather than
challenging the status quo.²

More creative user-led approaches to investigating other
perspectives on mental health services often face an uphill
struggle in convincing commissioners to find funding to integrate
this work into core service provision.³

In spring 2001, health and social services in Slough jointly
commissioned East Berkshire Mind to conduct a major piece of
research investigating user views on mental health services, and to
make recommendations for future service options. Research design
was entirely predicated on listening to service users, and then
broadcasting what people had said. Local management was informed
that findings would probably be difficult to work with, but they
gave their full support to the process, and a commitment to
implement recommendations.

Interviews were conducted so as to allow interviewees space to talk
about issues that were important to them. Further, the dynamics of
the interview, the identities of (professional) researcher and
interviewee, and the local context in which the interviews took
place all informed analysis of the accounts collected. In short, a
rigorous critique of where the research was coming from and what
the interviewees felt about being researched replaced the
“scientific” rigour that often characterises such work.

Seventy-nine people were spoken to, of whom 50 took part in
extended interviews. Fifty-two per cent were women and 32 per cent
from ethnic minorities. This included 27 per cent from south Asian
backgrounds, roughly reflecting adult demographics in the locality.
Interviewees were drawn from all types of statutory service
provision, as well as through voluntary, community and user
groups.

There were key findings in four main areas:

• Needs and choice. People wanted to talk less about services,
  and more about support for their needs as individuals. While a
  needs-based analysis is nothing new, what was important here was
  the rejection of the way services were habitually provided in
  discrete blocks into which users were expected to fit at certain
  ‘stages’ in their mental health experience. A more fluid and
  responsive service was demanded, in which user choice was
  respected, both when people felt they needed more supportive care
  and when they wanted to move on to new opportunities.
• Gender. Interviews with women were characterised by a verbal
  double-take when the (male) interviewer asked about their lives as
  women. Women were not used to having conversations about gender in
  a mental health context. However, they complained about both having
  their mental health issues discounted as “women’s problems”, and a
  refusal by professionals to recognise any relationship between
  their family and social lives, and their mental health. They were
  dissatisfied with a “gender neutral service plus women’s group” and
  felt that individual women had different needs and interests that
  needed different forms of support.
• Race. The (white) interviewer found it easy to share generic
  accounts of “Asian mental health” with users from south Asian
  backgrounds, even though these accounts had failed to improve
  access to services over time. As such, people felt they were
  outside mainstream mental health services, and were not being
  listened to as individuals.
• Hard to engage service users. The interviewer was warned about
  difficult users who could not or would not fit into existing
  service options. Yet the conversations with them about mental
  health service delivery were full of insight. These people
  challenged the understandings offered by the mental health
  professions, and their relevance to their own lives, expectations
  and aspirations. They demanded that service providers take
  responsibility for engaging them.

These findings suggest that the quality of user-provider
conversations is vital to the effective development of services.
Where conversations are ineffective there is a lack of shared
understanding between users and providers, and the gaps in service
provision highlighted above are the result. Therefore, the
recommendations made in the research report revolved around
improving the quality of relationships between service users and
mental health professionals.⁴ Equally importantly for
service commissioners was that, while far-reaching, the
recommendations (see above) did not call for large sums of new
money to be directed towards new services.

In the area of Slough covered by the project there now exists a
service in which users and providers are having meaningful
conversations daily about the way services are assessed, planned
and implemented. As such the research process described above
became the starting point of a consultation cycle.

A previously cynical user community felt it had been genuinely
listened to and began to experience tangible change as a result.
People were then motivated to become involved in that process, and
appropriate support began to be provided for them. In this sense a
user-centred service is not some ideal goal that cannot be afforded
or achieved in practice. A user-centred service works to enable the
people who use that service to participate as equals in
conversations about the way services are delivered.

The consultation results

• Among recommendations taken up immediately in Slough was the
  long-term resourcing of a properly trained, supported and paid
  user-led consultation group – Slough User Led Consultation (Sulc).
  Not only does Sulc monitor local service delivery from a service
  user perspective, it is also carrying out its own research into
  user priorities for service development. 
• Slough has also supported the principle of having users working
  throughout mental health services (for example, on reception
  teams). Work has begun on supporting users to develop and deliver
  staff training programmes, interview new staff, as well as offering
  various forms of peer support. 
• A recycling of existing day and community resources will enable
  users and staff alike to develop small-scale group projects that
  respond to the particular pockets of need identified above,
  creating a menu of services from which users can choose and plan
  their own care, in negotiation with professionals they know and
  trust. 
• A users’ charter for the provision of mental health services in
  Slough has been agreed as a set of standards focused largely on the
  relationship between users and staff towards which service delivery
  can aspire and against which it can be measured.   

Steve Gillard is a senior researcher for East Berkshire
Mind. Contact at:
admin@mindinbracknell.fsnet.co.uk 

References  

¹ For example, Carter et al,
Journal of Mental Health, vol 5, no 3, 1996 

² Rose, Users’
Voices, Sainsbury Centre for Mental Health, 2001 

³ Nicholls, Doing
Research Ourselves, Mental Health Foundation,
2001 

⁴ Gillard, Conversations
in Mental Health: Service User Views on Mental Health Services in
Slough, East Berkshire Mind 2002