Peter Beresford
Effective user involvement
Hello it’s good to be here today. My focus today is on effective user
involvement to improve practice, support and services.
I bring three affiliations to this discussion, first working as an
academic researcher in a university, second, having long term
experience of using statutory mental health services and third being
actively involved in service user organisations and movements as an
activist and service user researcher. The Centre for Citizen
Participation which I direct at Brunel University is one of the
University’s established research centres and participation is both
central to the process and focus of our activities.
I am also proud to be Chair of Shaping Our Lives. Shaping Our Lives
is an national (England, Wales and Northern Ireland) independent,
democratically constituted user controlled organisation and network
with a focus on developing user involvement in health and social care
and improving quality in services and support. We are now a formal
strategic partner for user involvement of the Department of Health.
We are made up of and work across a wide range of adult service
users as well as with young people looked after in state care and we
undertake research, development and consultation work. Through
Shaping Our Lives I have an involvement in government policy,
practice and other bodies at a national level which also helps in
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gaining an understanding of what helps user involvement to work and
what barriers it can face.
There has been a strong and growing interest in ‘user involvement’ in
health and social care policy and planning since the 1980s.
The term ‘reinventing the wheel’ is frequently used in field of
participation and user involvement. This seems to reflect the
problems it has learning from past experience. In one sense, of
course, ideas of participation, have a history stretching back many
centuries to the democratic ideals of ancient Athens. But even
understood in much narrower terms, they can be traced to initiatives
for public participation going back 40 years or so. Yet so far, in some
senses, there seems to be relatively little to show for this. A few years
back a study highlighted that little if any effort seemed to be made
even to evaluate the impact of participatory initiatives in the fields of
health and social care. Generally speaking we have little systematic
knowledge about what the gains and achievements of participation
may actually be. But as people are now saying and starting to try to
find out, it is crucial to know what impact or effect user involvement
actually has. How can it be helpful? Can it be unhelpful?
The frequent failure in research to draw on and synthesise
experience of user involvement in policy and practice has other
important implications. A further issue arises if user involvement is
seen as central to the research and policy process. If we accept the
current (official) view that change in practice and policy should be
based on both evidence and the involvement of service users, then
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any efforts to see research as a route to making such change, needs
to be coupled with some understanding of user involvement in the
policy and practice process. Thus user involvement in research
needs to be linked with user involvement in policy and practice
development. It is important to be familiar with the issues both raise.
There are two key sources of ‘evidence’ or knowledge which have
historically tended to be marginalised in health and social care and
indeed in public policy more generally. These are the knowledge of:
 practitioners – whose work is mainly face to face with service
users;
and
 service users – that is to say people who are on the receiving end
or eligible to receive health and social care service..
Both represent important perspectives and are increasingly
recognised as such. Both are at high risk of being overlooked,
devalued and ignored. While my discussion focuses on the
contribution of service users, this should not be taken to signify any
devaluing of the contribution that service workers or indeed informal
and unpaid carers and their experience have to offer. Practitioner and
service user involvement should both be seen as central.
Models of involvement
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User involvement is a complex and contentious idea. Certainly there
is little agreement about it. While historically, typologies of
participation tended to highlight the extent of involvement – most
notably with Arnstein’s ‘ladder of participation’, the key distinction that
now tends to be drawn relates to the ideological underpinnings of
different approaches to participation. There are currently at least two
key different approaches to or models of participation or user
involvement. These may be described as:
 The managerialist/consumerist approach, whose focus is the
service system and whose concern is to get public, patient and
service user input to inform services and provision. This is the
predominant model of user involvement in health and social care
and has underpinned both state and service system discussions
and developments in user involvement
 The democratic approach, whose concern is much more clearly
with people’s lives and improving their lives; where people as
patients, public and service users highlight the need to have more
say over the services they use to get the best out of them and to
have more say and control over their lives in general. This
approach to user involvement has been developed by service
users and their organisations. While it has been influential among
them and has contributed to change, it nonetheless tends to
represent a counter viewpoint rather than the dominant one which
is based on a managerialist/consumerist approach.
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Each of these approaches is concerned with and promises different
things. The managerialist/consumerist approach emphasises its
technicist nature, and is presented as a neutral means of information
gathering. There is no suggestion of any redistribution of power to
service users, but this goal lies at the heart of the democratic
approach to involvement which is concerned with increasing the
effective say and control of service users. Individuals and
organisations need be clear about these distinctions when they are
making decisions about the kind of user involvement that they want to
offer or that they wish to engage with. Problems frequently arise from
the failure to do so. I think that’s why there’s a lot of talk about box
ticking and tokenism.
Principles for effective involvement
Like all big ideas, use involvement can readily be subverted. To
retain its meaning, user involvement must be recognised as
something much more fundamental than the administration of
satisfaction surveys, getting people to go to meetings and getting
them caught up in the internal workings of the service world. There is
no one right way to ‘do’ user involvement. There is no magic
approach which ensures success. There is now, however, an
enormous amount of experience to help people get it right, and to get
it right as helpfully and cost-effectively as possible. This knowledge
and experience has been gained by the hard work of many service
users and service user organisations and by supportive workers,
researchers and others. Not only is there valuable experience to
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draw on from social care and health but also across public policy and
community action more generally.
There is a strong view among service users and their organisations
that user involvement must connect with and have meaning in
people’s lives – both in terms of process and outcomes. In the
context of health and social care services, for service users and
supportive workers, user involvement tends ultimately to be about
improving the treatment, support and service each person gets, so it
comes as close as possible to matching what they, with knowledge of
what might be possible, might want. Thus user involvement must
make a discernible difference in each person’s life and experience of
service. The acid test of user involvement is that it leads to positive
improvements in peoples’ lives and the support and treatment they
receive, both individually and generally. That is invariably why people
get involved. To make a difference. This is what they constantly have
said.
A number of principles for effective and ethical involvement have
emerged from existing experience in a wide range of areas. While
these do not necessarily offer solutions, there are very few initiatives
which have not been informed by or taken notice of the concerns and
experience which underpin them, which have been effective.
Support for people to get together
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In the fields of health and social care, the importance of supporting
the development of service users’ own independent groups and
organisations was highlighted first and most effectively by the
disabled people’s movement. While initiatives for involvement are
often directed at the individual, support for self-organisation – that is
for people to be able to get together on their own terms and under
their own control is crucial. The disabled people’s movement
emphasised the importance of such collective action as a basis for
both personal and political empowerment. By supporting sustained
opportunities for people in similar situations to get together, it
becomes possible to develop an infrastructure for and strategic
approach to user involvement.
Coming together in this way, people are able to gain information, gain
confidence and skills, develop ideas – bounce them off each other
and exert more influence. There must be more support for self-help,
support and user groups. These can also provide opportunities for
feeding in comments, ideas and proposals for improving policy and
provision. Being able to get together, for those who want to, provides
essential opportunities to develop collective user involvement to
complement the views of patients and service users gained as
individuals. It also offers a helpful route for accessing and including
non-affiliated service users, since service user organisations have a
particular capacity to encourage involvement through the trust and
shared experience that they have. This is a key way to exert power
and to achieve change in ourselves and in the worlds we live in
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Equal opportunities in user involvement
Initiatives for user involvement need to challenge rather than mirror
prevailing exclusions and discriminations. This is still often not the
case. There is increasing recognition that many people are left out of
involvement initiatives. There is increasing talk of ‘seldom heard
voices’ and so called ‘hard to reach’ groups. User involvement must
address difference and ensure that people are involved on equal
terms regardless of gender, sexuality, age, disability, distress, class,
belief, culture or race. There must be a real chance for diverse
involvement. There is also need to recognise barriers that relate to
the nature and complexity of people’s impairments, how they
communicate, where they live and what other services they might use
– for example if they are in the penal system.
Talk of ‘hard to reach’ groups, tends to be a euphemism for groups
facing particular exclusions and marginalisation. There are at least
two particular issues that must be addressed with specific initiatives
taken to ensure they are. Particular priority is needed here. First black
people, members of minority ethnic groups, refugees and asylum
seekers need to be are afforded specific support and opportunities to
be involved on equal terms. Second, people who communicate
differently, whether because they have visual impairments, are deaf
or have learning difficulties and do not primarily communicate in
writing or verbally, so they can contribute from their perspectives on
equal terms.
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Access and support
A key and related lesson about user involvement is that for it to work
for everyone, there are two essentials which need to be in place.
These can be simply headlined as: access and support. Access
means that there are structured, on-going ways of being involved; of
engaging with services and agencies of getting in and connecting
with structures of organisation, management, control and decisionmaking. Support means that people can expect to have whatever
help, support, encouragement, information and skill development they
may each need to contribute what they want to, how they want to. If
there isn’t access, trying to be involved can feel like banging on a
closed door. But if there isn’t support, only the most confidence,
experienced and assertive people tend to get involved – and then
they can expect to be ‘told off’ for not being ‘representative’! Both
components: access and support, are crucial to if the aim is to move
to more equal and broad based user involvement.
Ethical issues around user involvement
It is also important not to forget the ethical issues which user
involvement can pose, especially where people face real problems
and difficulties in their lives. This is an issue which has particularly
been raised in relation to the involvement of people who use palliative
care services, where service users may be facing life limiting
illnesses and conditions or all the issues posed by bereavement.
Service users may have very limited time, other priorities and may be
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tired, have pain and feel unwell. Concerns have been raised that
user involvement may become a new orthodoxy and service users
subjected to unreasonable pressure to participate. This is clearly
unacceptable. There must be choice about involvement. But there
are also the ethical issues around not involving people.
Here, key issues of support, which were mentioned earlier, and of
using sensitive and imaginative approaches to involvement, are
crucial. This last point is crucial more generally. We know that
generally, most people want to have a say over what happens to
them. So far, the signs are that this is no less true of people facing
great difficulties in their lives, including, for example, life-threatening
illnesses and conditions or bereavement. Choice is what is crucial
here. It is also important to give careful consideration to who is
intended to be the primary beneficiary of user involvement. If
ultimately this is intended to be the initiator of the exercise, with
service users seen primarily as a source of data or legitimation, then
there may well be significant tensions, raising fundamental ethical
issues.
Key areas for involvement
In the late 1980s and early 1990s when user involvement in England
and with comparable developments I think in Scotland, began to be
embodied in government legislation and guidance through the
Children Act and National Health Service and Community Care Act,
the emphasis was on user involvement in planning services and in
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individual ‘comment and complaints’ procedures. Many service users
found these two areas of focus difficult to relate to. Planning services
was something far removed from the lives of many people.
Complaints procedures were problematic, both because they signified
that things had already gone wrong and many people were reluctant
to complain about service providers they were dependent on.
In the years that have followed service users, notably social care
service users like disabled people, psychiatric system survivors,
people with learning difficulties, older people, looked after young
people and people living with HIV/AIDS have identified other areas to
get involved which have seemed more fruitful and effective. These
notably include user involvement in education and training, in
standard setting, occupational practice and developing user
controlled services and support. It will be helpful to look at each of
these briefly
User involvement in education and training
A constant message from service users has been that there are few
more effective way of changing practice and service cultures than
through involving service users in occupational education and
training. This has led to the widespread development of ‘user led
training’, ‘user trainers’ and training for user trainers. Not only does
this make it possible for workers to learn from people with direct
experience of services and to find out more about what they want
from services, but it also makes it possible, sometimes for the first
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time, for them to relate to them in positive, equal and active roles,
rather than in the traditionally passive and dependent role of patients
or clients. Service user organisations have pressed for this to extend
through all aspects of training; from providing direct input in
professional and in-service training to being involved in developing
course curricula, providing course materials and, indeed, selecting,
evaluating and assessing courses and students. All these are now
beginning to happen in social care training and education. The new
social work qualification introduced in 2003, requires the involvement
of service users in all stages and aspects of the degree and post
qualifying learning. The challenge is to ensure that such involvement
develops coherently and systematically across professions and
occupations.
User involvement in developing quality standards and outcome
measures
In recent years, there has been considerable political and policy
emphasis on improving quality and developing quality and
performance indicators, targets and standards in health and social
care. Ideas have mainly come from policy-makers, practitioners and
managers. They have tended to be managerialist and professionally
based in inspiration and approach. We know that patients’ and
service users’ concerns and priorities are not always the same as
those of service system professionals. Quality and performance can
mean very different things to the two groups. Pressure has
developed for service users to be involved in both the development of
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quality standards and outcome measures and in evaluating and
interpreting them. The work of Shaping Our Lives, the national
independent user controlled organisation, on developing user defined
outcome measures has signified the beginnings of this process in
social care.
User involvement in occupational and professional practice
There has been a tendency for user involvement to be abstracted and
reified as a distinct entity on its own. This separation of user
involvement from the mainstream and its association with special
meetings, committees, officers and activities, may discourage
engagement. But all service users by definition connect with practice
and practitioners. Occupational practice is a key (but so far often
neglected) domain for user involvement. What this means is the
understanding and construction of occupational practice as a joint
project between service user and worker, which the former can play
an active role in structuring and shaping in accordance with their
rights and needs. The service user is thus able to feed into and
influence such practice through its whole course, as long as they are
able and wish to. Concerns which they signal at one stage, can
continue to influence it throughout its course.
In this way practice becomes based on seeking the thoughts, views
and ideas of service users. It is a systematic process of discussion
and negotiation – which is what the best practice has always been.
This represents the most direct (and perhaps most effective)
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expression of user involvement. It also offers an effective route to
user involvement in planning and management. Through the
systematic collection, collation and analysis of the individual personal
views, ideas, knowledge and experience of service users, a key
evidence base is provided for the strategic and participatory
development of policy and services more generally.
Developing user controlled services and support
A key but often overlooked area in which health and social care
service users have advanced their involvement has been in the
development of their own services and support arrangements. The
best known of these are the direct payment schemes which disabled
people pioneered and which are now embodied in legislation and are
being developed in the UK as self-directed support, personalisation
and personal budgets. Growing out of the independent living
movement, which is committed to disabled people having the support
they need to live their lives on as equal terms as possible as nondisabled people and based on a social model of disability, direct
payments put service users in charge of the ‘package of support’ they
need. Service users have also developed their own collective user
controlled services. While these have often been restricted by
inadequate and insecure funding and support, the evidence is that
they are particularly valued by service users more generally.
User involvement in research and evaluation
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It is crucial that service users’ knowledge and experience is included
in all developments and in analysing and improving them. This means
taking forward user involvement in research and evaluation. This can
mean adding on the inclusion of service users to existing research;
developing collaborative research with service users and their
organisations and advancing user controlled research, research
which service users initiate shape and run. Then not only can
services and support be evidence based but that evidence will
include the key evidence of service users’ knowledge and experience
– their experiential knowledge. In this way the knowledge and
experience of service users in more likely helpfully to inform policy,
practice and services.
The big question is whether service user knowledge can ever be
included on anything like an equal basis unless service users and
their organisations are themselves fully and equally involved in
research and policy. This is a complex and contentious issues. It is
important to remember that service users have long been included in
health and social care research as a data source, accessed
(essentially without their involvement) through surveys and other
research methods. That’s why direct user involvement in research
and all these other priority areas is increasingly stressed by service
users and their organisations.
To sum up now
For me then, there are some basic questions and issues to address if
we wish to take forward user involvement effectively. For example:
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 What do we mean by user involvement when we are thinking of
taking it forward?
 What do we see as priority areas for taking forward user
involvement in our work?
 Which approach to such involvement do we think might be most
helpful in what we want to do?
 How do we ensure accountability in it?
 What kind of training is likely to be needed for user involvement
to work best and who might require it?
 Do we feel we can deal adequately with the practical as well as
policy issues such involvement might raise?
 How should we evaluate user involvement’s effectiveness and
measure its impact?
Of course this isn’t an exhaustive list. I wish everyone here well in
their efforts to develop effective user involvement in their work with
the prospect of better research as a result. Thank you.
*You are free to reproduce this work for non-commercial
purposes, provided you acknowledge Peter Beresford as the
author.
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