users and patients are now heralded as "experts by experience",
and one project is collating user expertise from around Europe with
the aim of producing a qualification enabling users to work in mental
health. But is it all worth the time and investment, asks Adam
by experience” has become one of the concepts of the moment
in mental health. It
refers to the knowledge that patients, service users and carers
have acquired through either the very experience of distress, or
caring for someone with mental health problems. Organisations from
the government’s National Institute for Mental Health to user-led
charities have embraced the idea. Training departments of universities,
mental health service providers and the police regularly commission
such service user experts by experience to run courses for their
the European Union is taking up the mantle of trying to assimilate
this expertise. The European Commission’s Leonardo Da Vinci
Program has been using 375,000 euros to fund a two-year project,
called Ex-In, with the aim of creating a service user knowledge-base
and developing an “Experts By Experience” qualification
which will springboard users into mental health employment. Standing
for “experienced involvement”, Ex-In has been harnessing
service user experience and know-how from six participating countries
to inform its template Experts By Experience course. Ex In says
such a qualification would be a recognition that people who have
experienced mental illness and been treated by services have “vast
growing number of training bodies, universities and services are
involving experienced [service user] people,” explains Jorg
Utschakowski of the Initiative for Social Rehabilitacion in Bremen,
Germany, and one of the Ex-In partners.
problem is that, in many cases, users have, due to the lack of structured
training for their work, no acknowledged status.”
UK partner is The University of Central England. Its professor of
community health, Mervyn Morris says knowledge by experience is
qualitatively different from traditional psychological and psychiatric
science. “It is more practical and life-orientated,”
he says. “It’s not knowledge that is about controlling
cites the example of the Hearing Voices Network, credited for showcasing
user-knowledge of voice-hearing.
voice-hearer will often talk about coping and managing strategies,
but he/she will not start from the perspective that voices are a
symptom of mental illness and are part of a disease,” says
Morris. “But this is what a psychological cognitive behavioural
perspective of voice-hearing might do. From the user’s perspective
it’s about living with voices and finding their own understanding
of voices. That’s a shift of perspective about the core nature
of the problem.”
planned Expert By Experience qualification is tied in with Ex In’s
grander vision that increased use of “experienced involvement“
will encourage a “more user-orientated, more satisfying and
less discriminating and degrading provision of mental health services.”
February this year delegates at a “Broadening Our Horizons”
conference at Birmingham University got the opportunity to hear
first hand about some of the user-led projects which will form the
basis of the modules of the proposed qualification.
some of Ex-In’s participating countries have more mature service
user-led services than others. Holland has hundreds of state-funded
user-led advocacy, peer-counselling and support projects already
in place. One service is a user-managed hotel, Zorghotel de Pit-Stop,
in Haarlem, offering people in distress a non-hospital refuge. But
Slovenia, for example, has no comparable service. It has just a
handful of community mental health services, none of which are user-led.
Petra Videmšek, a social worker, told conference delegates
that the only state-funded mental health services were traditional
psychiatric hospitals. Any community mental health service that
did exist was run by non-government organisations.
are 10 planned modules for the Expert By Experience qualification.
All material is being supplied by service-user organisations and
universities from Holland, England, Slovenia, Norway, Sweden and
Germany. The modules will focus on empowerment, recovery, the assessment
of clients using person-centred or narrative approaches, training
professionals on user perspectives on voice-hearing, peer-advocacy,
peer support, and the preparation of service user training and presentations.
delegates also heard about a form of “community mental health
forum” popular in Germany. Known as trialogue seminars, these
are when people diagnosed with psychosis (the experts by experience),
their family members, carers, friends, and professionals meet informally
in neutral settings and in their spare time to discuss mental health
issues, ranging from prejudices to neuroleptic medication. At the
conference, trialogue seminar representatives said such forums -
reportedly widely supported by service users in Germany –
offer a “mutual education” where “everyone is
regarded as an expert with respect to their own role and experience”.
the first trialogue seminar in Hamburg in 1990, there are now 130
working seminars, involving 5000 people. One module of the Ex-In
curriculum is devoted to trialogue, and students will learn will
learn to take into account the perspectives of professionals and
partners are markedly enthusiastic about trialogue, and Prof Morris
was impressed by a Hamburg seminar he visited. “There were
30-40 people at the seminar. Trialogue seminars, in effect, make
a community out of people involved in mental health. They create
possibilities through dialogue.”
from the conference, there is, however, scepticism about the Experts
By Experience qualification initiative. Laurie Bryant, service user
lead for the government’s National Institute for Mental Health,
believes many service providers would not appreciate the worth of
an Experts By Experience qualification.
says: “Such a course may produce highly motivated people with
a qualification, but a chief executive [of a service provider] will
be operating to a completely different agenda – that of controlling
budgets and ticking boxes.
I would not want to see is for such a course to raise people’s
expectations, only for them to go out into the real world and find
work for them is not there, so their hopes are dashed… Sometimes
we, as service users, are allowed to go so far, and then we bang
our head on a glass ceiling.
would prefer attention to be spent on preparing the ground first
– i.e. for the people running such a course to work with the
decision-makers first, and ask them how they are going to use and
embrace the people who take such a course. As service users we do
not work enough with service providers and those who commission
services – but it is they who are the power brokers.”
a member of the International Initiative For Mental Health Leadership,
believes service users might spend their time more productively
in learning leadership qualities. "To make an impact we have
to develop [service user] leaders who can sit down with chief executives
and change their thinking,” he says.
need to teach people to talk the professional talk. That’s
where I see the future. The question I always ask is where does
the decision-making power lie? I think service providers should
be commissioning 50 per cent of services. We need a complete paradigm
Stanton, of mental heath charity Together’s service user directorate,
argues that rather than offering Expert By Experience courses, energy
might be better invested on integrating service user knowledge into
training for professionals such as mental health nurses and psychiatrists.
“This would be better that developing separate curriculums
and courses for service providers,” she says.
funding ends in September, and Prof Morris says it will be down
to individual European countries to develop Ex In’s template
course in whatever way they see fit.
for the UK, Prof Morris believes health organisation and service
user groups have to decide whether putting together an Experts By
Experience qualification is worth pursuing. “It is now about
finding out whether there is a market for such a course,”
he says. “Maybe organisations such as Mind will take an interest.
view is that such a course should be run and accredited within the
higher education sector – and it should be of a certificate
level. I trained as a nurse and I then did a teaching certificate
qualification that enabled me to teach. Such an Experts by Experience
course could operate along the same lines.”
Ex-In’s partners are uncertain what in the long term will
become of the work they have put in, the very idea of an Expert
By Experience qualification hit the mark for some conference delegates.
Tracey Holley, of the Worcestershire Mental Health Network, said:
“I have had depression and really struggle with the idea that
I am an expert. But this course is just what I am looking for. When
can I sign up for it?”
Van Haaster heads IGPB, an Ex-In partner and a user-run research
company based in Amsterdam, Holland. In conjunction with a higher
education institution in Einhoven, IGPB runs its own smaller scale
Experts By Experience courses. Van Haaster, 54, is also a psychologist
who has witnessed both his wife and mother being admitted to psychiatric
1996 our government made it a law that one per cent of national
health care expenditure in each health region had to be spent on
user initiatives. So there are now around 200 user-led mental health
initiatives in Holland. These vary from user-run research companies
and day centres to smaller projects such as a service user-run kennel
for dogs and cats of people who are in [psychiatric] hospital. This
may seem a small thing – but, for some people, pets fulfil
an important need, and someone in hospital will want to know their
pet is being well-cared for.
"Most user-run projects in Holland receive between 250,000-500,000
euros. It’s not massive– but enough to do small things.
Moreover, most progressive mental health organisations in Holland
are supportive of these user-run projects and will, in turn, provide
funds. We also have a national service user organisation, called
have found that through these user-run projects people want to learn
more and improve their skills and competencies - this was a big
stimulant for running these [Experts By Experience] courses in Holland.
is user expertise, and users have a lot of experiential knowledge.
It’s important we make it explicit. For example, there is
all the knowledge gained through the self-help movement. It may
not be written, evidence-based knowledge, but self help is full
of knowledge. Some may consider such knowledge to be too anecdotal.
And while it is important that knowledge is connected with individual
stories, it’s also important to find the “intersubjective”
knowledge. I prefer to use the term “we-knowledge”.
We-knowledge is different from intuition. We must provide this we-knowledge
and develop our own validation strategies. Psychiatrists tell us
they know what is good for us, and how we should look at the world.
But we want to do it ourselves. It’s not about being against
professionals, but about building our self esteem.
or four modules from the Experts By Experience course already run
in Holland. And what, for me, is most important about the courses
is that they are creating jobs. Around half of the 150-200 service
users who have completed the courses have then found jobs.
had hoped Ex In would have been a bit more successful in having
a Europe-wide course. But it is complicated. Different countries
have different ways of doing things.”
* This article
first appeared in Mental
Health Today magazine
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