services have, over the last 20 years, taken on board much what
service users have campaigned for, says Peter Campbell. To
keep the momentum going perhaps now is the time to launch a national
body representing services users. Below psychminded exclusively
publishes an extract from a new book, Beyond The Water Towers, in
which Campbell examines the achievements of the service user
movement over the last two decades, and focuses on the challenges
In the summer of 1985, service user activists from the United Kingdom
met activists from other countries at the Mind/World Federation
of Mental Health Congress in Brighton, a
coming together that underlined the potential for collective campaigning
in this country.
autumn's Annual Mind Conference in Kensington Town Hall was the
first national mental health event at which service users made a
significant contribution to the programme. The following year, in
January 1986, Survivors Speak Out, the first national network for
service users involved in action, was established. At this time,
Nottingham Patients' Council Support Group was beginning its work,
pioneering collective and individual advocacy.
the end of 1987, National Voices, a service user network within
the National Schizophrenia Fellowship (now Rethink) and Mindlink,
a similar network within Mind, were up and running and Survivors
Speak Out had organised the first national conference of service
user activists over a weekend at Edale Youth Hostel. It could well
be said that something exciting was beginning to get underway (Wallcraft
et al., 2003).
is tempting to identify the mid-1980s as the time when service user
action really started. While there is a great deal of truth in such
a view, it does not do justice to action that had taken place before
this point. Protest against the mental health system - and protest
has usually been a powerful force behind service user action - has
occurred ever since the creation of the asylums nearly two hundred
years ago. But for a long time protest was, more often than not,
emerging from individuals rather than organised groups.
the 1970s an important group did form. The Mental Patients Union,
with branches in various parts of the country, can justifiably be
called the originator of organised service
user action (Crossley, 1999). When it broke up it was succeeded
by a number of smaller groups: Community Organisation for Psychiatric
Emergencies (COPE), Protection of the Rights of Mental Patients
in Therapy (PROMPT) and Campaign Against Psychiatric Oppression
(CAPO). These groups provided a link between action in the 1970s
and developments in the 1980s. CAPO, for example, although quite
a small group, was influential in the early 1980s and continued
its work into the 1990s. A number of activists who pioneered new
groups in the mid-1980s were introduced to action by the above groups
and by the British Network for Alternatives to Psychiatry (BNAP),
an organisation of mental health professionals and service users
that had links with the 'anti-psychiatry' movement. If the real
flowering of service user action took place in the late 1980s and
1990s, it was through the work of these often-neglected groups that
the first seeds were sown.
it is quite clear that there have been huge changes in the role
of people with a mental illness diagnosis over the last 20 years
- at least as far as mental health
services are concerned. Speaking in broad terms, in 1985 service
users were nowhere; in 2005 they are everywhere. Whereas service
users were hardly involved directly in the
development of the 1983 Mental Health Act, they have played an important
role in debates around the current Mental Health Bill. It is unlikely,
but not impossible, that any major development in the mental health
field would now be undertaken without formal attempts to consult
with people with direct experience.
situation was very different in 1985. Mind and other voluntary organisations
were 'the voice of the mentally-ill', speaking on their behalf without
any coherent means of being sensitive to their true wishes. The
few independent service user action groups that existed were unfounded,
unappreciated and on the margins. When they did capture an audience
they were accused of being extremists with nothing positive to offer.
sentiments would not be expressed today, at least not openly, and
it is true to say that service users have now been recognised as
rightful and valuable stakeholders in the process of developing
better services. Service user activists have penetrated areas of
the mental health system where their presence, let alone their positive
contribution, would have been inconceivable 20 years ago. The fact
that service users now run their own services, educate most groups
of mental health workers, even provide a research team at the Institute
of Psychiatry, the Service User Research Enterprise (SURE), is an
indication of the different type of landscape we are now inhabiting.
In short, people with a mental illness diagnosis have gone from
being an absence to a presence in the mental health arena. Use of
the descriptive term 'experts by experience' in recent years illustrates
the distance that has already been travelled and hints at the potential
that has still to be realised.
It is an open question how much of this transformation can be attributed
to service user action alone. There has been a steady demand for
'user involvement' from government and service providers and this
has been vitally important both in stimulating the steady growth
of action groups and shaping the types of activities they undertake.
Frequently the necessity of finding service users to feed the system's
need for consultation has been close to overwhelming.
user groups have sometimes been created solely to meet this demand
and it is not fanciful to suggest that if independent action groups
did not exist, government would have to create something similar
to replace them. So the demand for involvement has a life of its
own and creates agendas over which service users may have limited
control and which may not always serve their true interests. Having
said that, there is no doubt that service user activists have profoundly
influenced the way in which people with a mental illness diagnosis
have begun to emerge from the shadows and be recognised as an important
creative force in their own right.
of the success of service user action has been connected with the
growing number of people willing to 'come out' and speak openly
about living with mental distress. Challenging the secrecy surrounding
this subject is essential to meaningful social inclusion and it
is possible that such openness will eventually have widespread impact.
At present, it is more likely that people will reveal their histories
in and around mental health services and be less happy to speak
out in other settings.
is even anecdotal evidence that some activists have become more
cautious than they were in the latter respect as a result of persistent
negative attitudes among the public. Despite the greater presence
of people with direct experience in the media, stereotypes of dangerousness
and 'alienness' are still prevalent and it is clear that progress
remains frustratingly slow. Even so, the importance of mental health
workers and service users 'coming out' should not be underestimated.
Recent revelations by senior officers of the Royal College of Psychiatrists
about their experience of mental distress would have been highly
unlikely 20 years ago and illustrate the changes that are beginning
to take place (Friedli, 2004a).
important aspect of the development of action has been the growth
of independent service user groups. These have formed the bedrock
for activity, although it is important to recognise that work by
activists on their own or within voluntary organisations for people
with mental distress has also made a significant contribution. It
was by no means inevitable that action would be focused around independent
service user-led or service user only groups. In this respect, the
fact that Survivors Speak Out, an organisation dedicated to support
the formation of independent groups, was the first national network
to be established was probably significant. Its existence helped
ensure that new action did not become entirely directed through
large voluntary organisations like Mind or the National Schizophrenia
Fellowship (now Rethink).
extent of the service user movement
It is difficult to be certain about the current number or character
of service user action groups. The On Our Own Terms research report,
(Wallcraft et al., 2003) which covered England, developed a cleaned
database of 896 groups. A recent article (Friedli, 2004b) suggests
that there are 700 across the United Kingdom. There are problems
in obtaining an accurate picture, partly as a result of the creation
and disappearance of local groups, partly because it is not always
easy to discover whether groups are service user-led, service user
only or attached to voluntary groups. It is also true that people
do not always use the same definitions to categorise them. These
are interesting questions and important in any attempt to define
a detailed description of what is going on. But in terms of providing
a general picture of developments in the last 20 years, it is sufficient
to say that there are now substantially more than 500 groups whereas
in 1985 there were around a dozen.
a base of about 50 groups at the end of the 1980s, growth in numbers
accelerated through the 1990s. There can be little doubt that the
NHS and Community Care Act 1990
(House of Commons, 1990) stimulated the formation of groups by requiring
services to consult with their users. Statutory and voluntary organisations
became more active in
supporting service user action. User development workers began to
be employed. Part of their brief was usually to establish forums
through which the service user voice could be better heard. Funding,
although not generous, was more available than in the previous decade.
At the same time, service providers' requests for consultation had
an effect on
the character of action groups. Few felt strong enough to resist
these requests even if they wanted to. The experience of being ignored
or on the margins meant that involvement, on whatever terms, seemed
too important to turn down. As a result, groups became more closely
tied to the service system than groups in the 1980s that were more
able to retain a separate position, offering criticisms and proposals
from outside services.
late 1980s and early 1990s also saw the establishment of a number
of networking groups. These included the United Kingdom Advocacy
Network (UKAN), the Scottish Users Network and the US-Network, covering
Wales. Networks dealing with particular aspects of the service user
experience became active, including the Hearing Voices Network and
the National Self-Harm Network. The Manic Depression Fellowship
became a service user-led organisation.
the 1990s, local groups set up by people from Black and ethnic minority
communities also began to develop. On an international level, service
users from the United Kingdom were involved in the creation of the
European Network for Users and Survivors of Psychiatry. This level
of activity was something different from what had gone before, albeit
that some activists complained that action had lost its radical
edge. Even so, the work in England of the Mental
Health Task Force User Group (1992-1994) which collaborated with
the Department of Health Mental Health Task Force to produce a number
of important publications was seen as a significant success. The
possibility of influencing policy at a national level, an opportunity
has not yet been properly realised, seemed quite realistic at that
of the movement
considering the types of action in which groups have become involved,
and their successes and failures, it is worth noting the organisational
achievements of the last 20
years of action. The successful existence of so many groups is witness
to the way in which the activists' belief in the principles of self-organisation
and self-help has been put into practical effect. Although some
groups have been short-lived, many have been operating for ten years
or more. The skills and long-term commitment required have been
and these are among the qualities which people with a mental illness
diagnosis are popularly supposed to lack and be unable to acquire.
large numbers of activists, who at the time of their first involvement
did not have organisational experience or expertise in collective
working, have successfully acquired these skills. The fact that
they have very often been working in small, under-funded organisations
may actually make their achievement more remarkable. It is certainly
not the case that keeping action groups up and running is an easy
task and groups have had to come to terms with the ongoing mental
distress of their members. Burn-out has been a feature. But these
problems are not exclusive to service users. The creation and maintenance
of action groups clearly demonstrates that the capacities of people
with a mental illness diagnosis have been routinely underestimated.
Sooner or later this revelation must penetrate mental health services
has become very diverse and, as has already been suggested, service
users have influenced most aspects of mental health services. These
include: consultation and monitoring in connection with existing
services and input into the development of new services; provision
of training and education to all groups of mental health workers
involvement in selection of employees; undertaking service user-led
research; creating and running service user-controlled services;
and promoting new understandings of mental distress. Although local
groups are unlikely to be involved in all these areas, most will
be active in more than one. While action has always been largely
concerned with mental health services, groups have also undertaken
artistic activities and provided mental health awareness education
to the general public. Work with the media has been an increasing
of the contribution of service user activists has been made at a
local level and there has been a limited amount of research detailing
the impact of local action across the country. It seems likely that
important but small-scale changes in the nature of services have
been achieved rather than dramatic 'bricks and mortar' transformation.
Attitude change and greater sensitivity and flexibility in the day-to-day
running of local services have certainly begun to occur. Long-standing
grassroots demands for independent advocacy and patients councils
have also given service users more influence over their care and
treatment and the environments in which they take place.
to be overcome
It may be a cliché to suggest that while much progress has
been made much more remains to be done, but there is a good deal
of truth in such a generalisation. At this stage in the development
of service user action there is a danger in being over-impressed,
because of the low base from which action began. A number of obstacles
continue to limit the service user contribution. These need to be
acknowledged and overcome in the immediate future.
remains a crucial issue. In an evidence-based culture, evidence
from service users frequently fails to measure up to 'scientific'
standards. The issue of representativeness has been a bugbear for
action groups throughout the last 20 years and has never been tackled
in an open way, allowing service providers to control when contributions
from service users are taken seriously or not. The basis for such
choices has usually not been made clear. Mental health professionals
have regularly warned of the 'professional user', a slur which suggests
that activists are not real service users and are not in contact
with their constituency. It also betrays an anxiety and hostility
around the fact that people with a mental illness diagnosis began
to self-organise in a way professional groups have been doing for
many years. By questioning the legitimacy of action in these ways,
the establishment ensures that it remains in control.
involvement has moved on from consultative work to other areas,
concerns about credibility have continued. Service user-led monitoring
and research (Rose, 2001; Mental
Health Foundation, 2000) has often been undermined as not being
'real' research and lacking in scientific objectivity. The development
of new understandings of aspects of mental distress like self-harm
or hearing voices (Pembroke, 1994; Romme & Escher, 1993) has
met with official scepticism for similar reasons. While consultation
is a more acceptable, but still subtly controlled, activity, work
in the above areas provides a far greater threat to the power base
of the mental health establishment and so must be kept at arm's
length. Despite the progress of the last 20 years, it is quite clear
who is pulling the strings when it comes to the control of knowledge
view of this, it is not surprising that messages from people with
direct experience take so long to have an impact. Mental health
services grind extremely slowly. We are now in the midst of an epidemic
of concern about acute care that has been intensifying since the
late 1990s. Service user activists have been complaining about conditions
on acute wards since the late 1980s (Good Practices in Mental Health/Camden
about improvements and alternatives have been forthcoming over a
similar period but have only latterly led to concrete results, for
example ward round codes and
crisis houses (Openmind, 2004; Mental Health Foundation/SCMH, 2002).
now widely canvassed by professional and voluntary organisations
in relation to a new Mental Health Act, were first taken seriously
by service user action groups. In the mid-1990s, Survivors Speak
Out was the first organisation to produce guidance for service users
on writing their own advance directive. Without betraying too much
bias, service users can claim to be providing many of the good new
ideas in the above and other areas.
providers' responses would benefit from some acceleration. Resources
are a major factor limiting the effectiveness of service user action.
A great deal has been achieved on very little. While government
and service providers' expectations and demands for input have steadily
increased over the years, resources have usually not grown to match
them. Although service user action groups are no different from
other voluntary organisations in their dependence on unpaid work,
there is a limit to the extent and quality of involvement that can
be sustained without a greater commitment of resources. It is hard
for activists not to detect the controlling arm of the establishment
when it comes down to giving and denying money. Action has moved
on in many ways and there are a much greater number of service users
employed in the 'service user involvement industry' than there were
in the 1980s and early 1990s (Snow, 2002). Nevertheless, there is
a great imbalance between rhetoric and practice when it comes to
funding. The service user contribution cannot be maintained, let
alone developed, until this issue is successfully addressed.
Empowerment has become an important concept in recent years, particularly
in regard to the lives of people who are long-term users of welfare
state services. Apparently, mental
health service users are becoming empowered. Like other fashionable
concepts, partnership for example, empowerment can be used to soften
or obscure realities as well as reveal them. Nevertheless, it is
now so ubiquitous that it may be useful to look at the experience
of people with a mental illness diagnosis in terms of their ability
to control significant aspects of their lives.
stated, people with a mental illness diagnosis remain what they
have always been: a fundamentally powerless group. While acknowledging
that there have been recent improvements in their status, it is
still clear that both in relation to mental health services and
their position in society they reside somewhere near the bottom
of the pile. The Disability Discrimination Act (1995), the Human
Rights Act (1998) and the National Service Framework for Mental
Health (DH, 1999) can with justification be called steps in a better
direction. But they do not alter the basic reality. In 2005, people
with a mental illness diagnosis are on the lowest rungs of the hierarchy
of power. There are a number of factors that help ensure they will
stay there for the foreseeable future.
the most important of these is poverty, an issue that service user
action groups could have done more to highlight in recent years.
Poverty is a dominating feature in the lives of service users, robbing
them of effective control of their destinies and diminishing the
quality of day-to-day existence. Most of the experiences that cause
mental distress are directly linked to a lack of money: poor housing,
poor nutrition, lack of leisure opportunities, boredom, isolation
and hopelessness. Many service users are unable to get out of the
house and travel about locally unless they are lucky enough to have
a free travel pass. A social existence of this nature cannot by
the remotest stretch of the imagination be called empowering, no
matter how much more involved service users are in their care and
back over the last 20 years and the increasing inequalities in British
society, it is hard to feel optimistic that substantial changes
are likely in this crucial area in the near future. Powerlessness
linked to poverty is likely to remain a fundamental stumbling block.
is another major obstacle to empowerment. While it is possible to
argue that there is now more social awareness about 'mental health
problems', public attitudes have not changed substantially. People
may feel freer to talk, write or broadcast about a range of psychological
problems. But psychosis is pretty much off limits and schizophrenia
still fundamentally unspeakable. Since the public woke up to the
reality that 'the mentally ill' were no longer being taken care
of in the remote (in all senses) asylums, there is evidence that
attitude change has been as much negative as positive. Certainly
fear and preoccupation with perceived violence has increased. It
is not clear that greater presence in the community has enabled
people with a mental illness diagnosis to appear any less alien
to the majority.
some respects, everyone involved in the mental health field, service
user activists included, may have been naive in hoping that somehow
the best way of developing community care was to slip it in and
hope that the community would not really notice. Perhaps the fact
that the experts did not then know, and to an extent still do not
know, how to effectively change public attitudes and behaviour had
something to do with it. Whatever the reasons, people with a mental
illness are still reduced to powerlessness through discrimination
and denied any real equality of status. It invades every aspect
of their lives. A survey of 778 service users (Read & Baker,
1996), which found that 47% had been abused and harassed in public
and 26% had been forced to move home as a result of harassment,
made the oppressive and tangible nature of discrimination very clear.
health services have become more empowering. The opportunities for
service users to influence their own care and treatment are greater
now than 20 years ago. In this respect, the growth of independent
advocacy, a steady development that owes much to the commitment
of service user activists, has had a positive impact. Even so, there
are still very
basic shortcomings. Complaints about the amount and quality of talking
and listening have not diminished. Service users still often feel
they are not taken seriously or given sufficient information, particularly
around medication. Respect and dignity are regularly demanded.
the Department of Health claims that there is widespread satisfaction
with services overall, numerous small scale surveys have revealed
major disquiet among service users at aspects of the system. It
does not seem impossible that satisfaction is linked to some extent
to low expectations. At the same time, opportunities for individuals
more involved are not always realised. Even after nearly 15 years,
the Care Programme Approach, a significant step in putting service
users at the centre of their care, does not
seem to be operating effectively in parts of the country. Research
evidence suggests that involvement in CPA, indeed even awareness
of it, can be limited (Rose, 2001).
assessment of empowerment within services must take account of the
Mental Health Act. On the face of it there are contradictions within
a service that seeks to give its users
more control over their lives and yet is prepared to exercise, increasingly,
powers to detain and compulsorily treat them. The fact that this
can happen legally, even when the individual retains the capacity
to make treatment decisions, must be seen as an extreme form of
personal disempowerment. Nor should its disempowering effects on
people who are not detained under the Act but are potential detainees
be underestimated. It is possible to see the Mental Health Act as
a significant factor in the diminished status of people with a mental
service user activists have campaigned against any extension of
compulsory powers. They have fought this issue consistently since
the first proposals for Community Treatment Orders in the mid-1980s.
Although they can claim some success in helping delay developments,
it now seems almost certain that they will have to admit defeat
and watch as the government increases its power to intervene in
their lives and extend compulsory treatment powers into the community.
is a significant rebuff to the beliefs underpinning the service
user contribution in recent years, and in the eyes of many activists
calls into question the sincerity of the current Government's commitment
to empowerment and partnership. Moreover, it seems to confirm increasing
suspicion that when it comes to the crunch, government will always
more enthusiastically to the demand to control people with a mental
illness diagnosis than to empower them. It is scant consolation
that so many voluntary and professional organisations are now throwing
in their lot with service user activists over the issue of compulsion.
From an activist's point of view the current period is a time of
uncertainty - uncertainty about the future for service user action
and about the future for people with a mental illness diagnosis
as a whole. While life is more likely to be lived in the community
rather than institutions, it is still far from clear on what terms
that life will be lived or what its quality will be. On the one
hand, the Government has recognised social exclusion as an issue
and produced a useful report setting out ways of challenging it
(SEU, 2004). On the other it seems content to go along with exaggerated
fears of risk and dangerousness and tip mental health services further
towards social control.
the recent growth of interest in creating employment opportunities
has a darker side relating to the Government's desire to reduce
the numbers of people with mental health problems on Incapacity
Benefit. Already fears are growing that there will be greater commitment
to decreasing overall benefit payments than to ensuring people are
off into insecure and low-paid employment. At the same time, there
is a continuing refusal to reward the contribution of service users
on benefit towards the development of mental
health services. In many respects, convincing signs that society
is really interested in bringing any group of disabled people in
from the margins are hard to find. The struggle
for equal citizenship has a long way to go and it is not clear how
well-equipped people with a mental illness diagnosis are to influence
despite this, it is certain that service user action is not going
to go away. A degree of permanence has been achieved and there are
a number of challenges for the immediate future. One of the most
important is to extend the involvement of minority groups in action.
is particularly relevant to Black and minority ethnic service users.
Although there is a danger of underestimating their contribution
in recent years, they have been under-represented in action and
as a result their issues have not gained the priority they deserve.
Consideration also needs to be given to the type of alliances action
Much of the last 20 years has been devoted to work in collaboration
with mental health professionals rather than other groups with similar
experiences to service users. As issues to do with social inclusion
and discrimination become more important there is an argument for
developing alliances with other people with disabilities and other
groups of welfare state users. The demand for action is likely to
continue because service providers will go on requiring 'user involvement'
and because activists will want to open up other areas.
organisation and co-ordination between groups will become more essential.
There is an argument that a clearer ideology has become necessary
to challenge biomedical orthodoxies that will always disempower.
Certainly, it would be helpful if there was a clearer statement
of shared beliefs and objectives. In the past many service user
been reluctant to create an overarching organisation that might
claim to promote 'the service user voice' at a national level. This
is beginning to change and a number of activists
have been coming together to discuss setting up a broad forum that
might increase the impact of action and develop a greater national
presence. After 20 years, the issue of
effectiveness has become particularly important.
has never been a problem. Activists have been notably pragmatic
up to now. Within mental health services there are a significant
number of people, across all professional groups, who are willing
to continue learning from the direct experience of people with a
mental illness diagnosis. Services are more responsive. New understandings
are being explored. Practice is starting to alter. In the next few
years it will be interesting to see if activists can change services
more radically while at the same time turning attention to a society
largely untouched by service user action.
Peter Campbell was a founder member of mental health campaigning
group Survivors Speak Out. Since 1990 has has worked as a freelance
trainer and writer in mental health. He has used mental health services
for more than 35 years.
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