More than just medicine

Vicky Nicholls explains how the Strategies for Living project,
which makes mental health service users pivotal to research,
provides support for the effectiveness of alternative
therapies.

People with mental health problems are ideally placed to say
what they want from the services that are supposed to help them and
this can provide a sound basis for developing services that offer
them real choices.

Independent user-led research seeks to redress the balance of
research and service evaluation commissioned by service
commissioners and providers, which often focuses on treatment
located in a western medical understanding of mental health and
disease. The development of alternative approaches, such as
complementary therapies and self-help groups, has sometimes been
hindered by a lack of research evidence to support their
effectiveness.

The Strategies for Living user-led research programme is
independent, so is better able to support people with personal
experience of mental distress to set the research agenda, decide on
the questions to be asked and carry out the research. Our UK-wide
research into people’s coping strategies¹, and most of
the completed six local user-led research projects we have
supported to date, found the common themes to be the importance of
acceptance; the ability to take control; and a sense of belonging.
Concepts that go beyond symptom relief were key across all of the
Strategies for Living projects. What made a difference to many
people was putting the experience of treatment in the broader
context of their lives. Rooted in an extensive consultation with
user groups around the UK and findings from our earlier user-led
survey, Knowing Our Own Minds,² the local
projects particularly focused on self-help, complementary
therapies, and religious and spiritual beliefs and practices.

In an evaluation of auricular (ear) acupuncture, for example,
women with a range of mental health diagnoses volunteered to try
the treatment regularly over a period of up to six months. They
were all positive about the experience, and for some it had led to
significant life changes such as feeling able to come off
antidepressant medication. The setting for the treatment was
important, including the welcoming atmosphere and the opportunity
to be still in calm surroundings. Volunteers reported an increased
awareness of state of mind as a result of the treatment. They also
referred to suppressed feelings coming out, to feeling empowered
and making choices, as well as to symptom relief.

Religious beliefs and practices were very significant to the
Muslim men involved in another small project in Manchester.
Attending the mosque was an important signifier of their beliefs.
It played a supportive and healing role insofar as the men were
able to meet with others with shared beliefs, feel a sense of
belonging, and experience a calming effect, for example from
listening to recitations from the Koran.

The pivotal role of relationships in affecting well-being was
also a key theme of research into user groups and drop-ins.

Other research has highlighted the importance of feeling part of
something, of knowing there are others who have been through
similar experiences. Talking with others who have acknowledged
experiences of distress may or may not include talking about those
experiences.

Throughout Strategies for Living, for example, the ethos of
being honest about who we are has often served as a kind of safety
valve giving others permission to be themselves.

In the research into voluntary sector drop-ins in South Wales,
many interviewees talked of the enormous value of meeting others
with shared experiences. But the way that services were run was
also key, with contrasts made between the approach of the voluntary
sector drop-ins and the ethos of the statutory sector day centres
that were seen as inflexible and afforded clients less autonomy and
independence.

Many people resented the fact that after they had been dropped
at the day centre by the bus, there was no opportunity to leave the
building until being taken home again. They considered the
activities they were offered in statutory day services unsuitable
and patronising in many instances.

“The activities were childish, playing bingo for sweets. I found
it condescending.”

Voluntary sector drop-ins meanwhile were described by some as “a
lifeline” in communities where isolation and stigma are a common
experience. The peer support experienced by people attending the
drop-ins often extended to sharing social activities. The value of
drop-ins in offering opportunities for friendship in a welcoming
atmosphere cannot be quantified, as illustrated by this quote from
one interviewee:

“If I was not coming here I would spend all day in bed, this
gives me some sort of lifestyle. I am happier coming here, felt I
was going round the twist before. My only other option would be the
pub.”

Another project highlighted the importance of choice in people’s
lives. Service users in Camden borough in central London were
unimpressed with aspects of the psychiatric service. Their
experience was that it was focused on drugs and a narrow model of
mental health, not allowing space for a more holistic or spiritual
approach. Three themes that particularly came up in group
discussions were: self-help, alternative and complementary
therapies, and religious and spiritual beliefs and practices.
Information on supports in each of these areas is included in a
comprehensive local mental health handbook that was developed
alongside the meetings.³

Taken together, the projects’ findings contribute vital evidence
about the sorts of approaches, and the values underlying these
approaches, that people needing support for troubled minds, hearts
and souls often welcome.

Additional evidence for an holistic response that includes being
sensitive to people’s spiritual and religious needs is now
beginning to emerge from a further project based in Somerset
supported by Strategies for Living, investigating people’s
religious and spiritual beliefs and needs. Service commissioners in
this area are committed to taking the research evidence seriously
in considering future directions for mental health services.

Meanwhile, the struggle to recognise the legitimacy of
alternative forms of evidence continues. This struggle goes
alongside an increasing acknowledgement that many prevalent forms
of treatment and support are more likely to be based on patterns
that have become ingrained over many years than on any evidence
that they “work” for those they are supposed to serve. A shift
towards more user-focused criteria for inclusion of research in
reviews of effectiveness, would enable robust smaller scale
qualitative research projects to be embraced more wholeheartedly.
Users’ voices could then make a more significant contribution to
service planning decisions based on research into our
priorities.

The new Strategies for Living phase will aim to play a key role
in influencing such mental health service developments through
grassroots work with a range of local projects, designed and
carried out by service users in Glasgow, Wales and London.
Continuing dialogue with service commissioners and providers will
also help us to ensure that the growing body of evidence about what
works, from people with experience of using services, truly
influences the development of quality mental health services that
people want to use.

¹ A Faulkner, Strategies for Living: A
Report of User-led Research into People’s Strategies for Living
with Mental Distress, Mental Health Foundation,
2000

² A Faulkner, Knowing Our Own Minds,
Mental Health Foundation, 1997

³ Choices: A Mental Health Handbook for
Camden is available from Yan Weaver, the making choices
project, c/o 1st floor, 48 Fortess Road, Kentish Town, London NW5
2HG. Please send £1.50 in stamps and full address, including
postcode.

Further information from the Mental Health Foundation, on 020
7535 7414. Copies of local project reports and Doing Research
Ourselves from 020 7535 7441.

Vicky Nicholls is research and training co-ordinator,
Strategies for Living Project, Mental Health
Foundation.