Fully engaged

Despite the growing emphasis on involving the people who use
services in their planning and delivery, service users themselves
have some very mixed feelings about the way this emphasis is
developing. Users’ involvement in health and social care isn’t
necessarily a positive. There have been some real achievements, but
there is also a broader picture of users being ignored, tokenised
and devalued. Yet service users should be at the heart of the
issue, and it’s time to get the focus of user involvement back on
them.Here, members of the national, independent, user-controlled
organisation Shaping Our Lives look at four different aspects of
user involvement: service planning, training, service provision,
and research and evaluation.   

User involvement in social work training
by June Sadd, manager of the Wiltshire and Swindon Users’
Network

Some social work training programmes have involved service users
effectively for several years and I speak from the experience of
working with two programmes in the South West: Bath University and
Wiltshire College Trowbridge. Recently, other academic institutions
have contacted us to find out how to develop user involvement in
their new programmes, and the disparity in the quantity and quality
of user involvement in different programmes has been
highlighted.

Good practice requires resources and opportunities for real user
involvement to influence training. The Wiltshire and Swindon Users’
Network is responsible for arranging and supporting user
involvement in the courses at Bath and Trowbridge, and is one of
the partner agencies at programme management level.

Service users attend management groups, and also attend sub-groups
which are responsible for developing assessment, curriculum,
placements, quality assurance, and equal opportunities for social
work courses. The intensity and pace of user involvement has
accelerated as colleges prepare for the new social work
degree.

Service users are also involved in interviewing applicants,
lecturing, and validation processes. They receive a fee of £5
an hour for their participation, except when they deliver training,
when they are paid the external lecturers’ rate. Good practice
dictates that service users quickly move away from “doing a slot”
on a module designed by the academics, to designing their own
training programme.

The Wiltshire network also offers practice placements. While in the
past the arrangements have accepted non-social work trained staff
in the practice teacher role – providing they are trained and
competent in assessing practice – there is concern that in the
future the qualification requirements for the assessing role will
prevent this. What capacity will there be for the additional
practice teaching commitment which will be required? It can already
be a struggle to find enough suitable placements. Also, placements
within user-controlled organisations are extremely valuable for
learning, particularly with regard to value base and attitude.
These unique opportunities to develop practice by approaching
dilemmas around risks, rights and responsibilities, and choice and
control, from a user perspective must not be lost.

The developments in social work education are generally considered
to be positive. Service users are reassured that social work
training is not becoming too theoretical, as there will be
increased opportunity for practice development on placement. We
welcome the increased contact that students will have with service
users as we feel that this is where the best learning takes
place.

User involvement and people with learning
difficulties
by Vanessa Williams and Jennifer Taylor, who carry out research and
give training and advice. They work for Shaping Our Lives and
People First. Both women have learning difficulties. Support by Vic
Forrest

“The white paper [Valuing People] has made some difference
for some people with learning difficulties but not everyone,” says
Williams. “Some people can get flats and some people can’t. It’s
not right for us to be shoved into day centres because social
services say we have to go somewhere in the daytime. They say we
learn to be more independent but we want to have more control over
our own lives and (in the day centres) staff are having control
over your life.

“I had an assessment last Thursday,” Taylor says. “The social
worker rang me up and said ‘I’m coming round to see you’. I’ve
never met her before. She asked me questions about what I can do
and what I can’t do. She wrote about my past; about my family, my
grandmother, my two sons, everything and I was quite shocked. It’s
bringing up all the bad memories. She was too nosy. It makes you
feel small. She stopped me moving into flats for people with
learning difficulties. She said I don’t need the support, but I do
really. I am going to fight to get into the flat.

Williams says: “Jennifer does need support. It should be the
service users saying how much help they need and what they don’t
need and not the social workers because the service users know what
is best for them.”

“It’s your life at the end of the day,” Taylor adds. “This is why
we need to stand up and speak out about what you want and what you
don’t want in your life.

“Some people with learning difficulties don’t have a say over what
they do in the daytime and night,” Williams argues. “It is always
carers who make decisions. They [some people with learning
difficulties] haven’t got the willpower and confidence to say what
they want to do. I am stronger than they areÉ It’s not always
easy to fight back against staff because they don’t agree with me
sometimes and it feels like they have got the power to say what you
can and can’t do. It’s much easier since the white paper for me to
have control.

“The government is more powerful than social services. We could go
above social services, to complain about them. That’s what they are
frightened of. I’ve got the power because I’ve got people to
support me to make decisions and get advice. My way of having power
is that I stick to things and if I don’t want to do something, I
say I won’t do it, and I don’t do it.”

User involvement inservice planning
By Anna Sartori, a member of the management board of Surrey Users’
Network

User involvement in service planning highlights both
problems and possibilities. In the Surrey Users’ Network, our
experience has been that user involvement is a requirement which is
often seen as a nuisance. This is a hangover from the past, when
there was frequently a confrontational attitude between service
users and providers.

This attitude still persists – one recent joint planning meeting
hovered on the brink of disaster as two health service managers
proclaimed: “This meeting is a waste of time. In the NHS we have to
work within our parameters, so dealing with you people is
irrelevant. We had to come here because we were instructed to do
so, but it cannot affect our way of working.” Luckily, one neutral
observer pointed out that what was now government guidance
regarding user involvement would almost certainly become enshrined
in statute. The open debate that followed was both entertaining and
useful.

Yet other approaches to user involvement are being developed with
the co-operation of health and community care planners. For
instance, in the case of large planning meetings, using workshop
groups to discuss specific issues has proved successful.

Where participants have been willing to openly state their concerns
about past problems and have discussed solutions used elsewhere,
there has been good progress. Health and social care staff have
found things out from each other and from service users for the
first time and discovered that, despite gulfs in background and
experience, everyone has something useful to contribute and that
positive outcomes are achievable.

By Munir Lalani, a member of Asian mental health service
user group Awaaz

The group’s name means “inner voice” in Urdu. It provides advocacy
services and drop-in facilities within Manchester and Salford. This
is important because, while our white counterparts can argue that
the system is bad, the ethnic minority perspective is that there is
little or no service provision and things are getting worse.

Awaaz gets invited to sit on several planning groups within the
wider health and social care structure. Unfortunately, user
involvement within the South Asian community in the UK as a whole
is in its infancy due to the lack of active service users.

One of the biggest problems for any survivor group is the issue of
taking a payment. Unless this government has an overall strategy
for paying service users, the skills of many service users who have
a lot to contribute will be lost. Service providers must stop
making the age-old excuse, “We can’t pay you because it might
affect your benefit”. The other side of the coin is the “sandwich
brigade” who will talk to any provider as long as they get a cup of
tea and a sandwich. Surely someone can come up with a middle
ground?

User involvement in research
By Peter Beresford, chairperson of Shaping Our Lives and professor
of social policy at Brunel University

Both statutory and non-statutory funders are increasingly requiring
evidence of user involvement in bids for grants. Service users are
becoming involved in a growing range of research activities; peer
reviewing grant applications, being invited to join research
project steering and advisory groups, and identifying our own
priorities for research.

The Social Care Institute for Excellence, charged with developing
the knowledge base for social care, is chaired by Jane Campbell, a
disabled service user. It emphasises the value of “user knowledge”
and is committed to user involvement in its own workings. Involve
(formerly Consumers in NHS Research), established by NHS Research
and Development, includes service users on equal terms in its
management group and has strategic responsibility for taking
forward public and user involvement in health, public health and
social care research.

Meanwhile, the Sainsbury Centre for Mental Health, service user
research enterprises at the Institute of Psychiatry and the Centre
for Disability Studies at Leeds University, have all taken user
involvement forward with large ground-breaking research projects.
Strategies for Living at the Mental Health Foundation has also
supported innovative local user-controlled research projects,
providing training and support for user researchers.

But the overall picture is an ambiguous one. There are widespread
concerns among service users that much “user involvement” is
tokenistic and just a “tick box” exercise. Only the tiniest
proportion of research funding so far goes to research which
service users initiate and control. Randomized control trials are
still seen as the research gold standard and qualitative research
as inferior. There are fears that new proposals for a “research
governance framework” for social care will restrict rather than
enhance user involvement. Most of the research that users are
involved in is still shaped by other people’s research interests,
research questions and research methods and values.

The truth is that user involvement can’t be seen as just another
add-on to research. It has much more fundamental implications. User
involvement and user controlled research represent a fundamental
challenge to traditional research values of “neutrality”,
“objectivity” and “distance”. Two things are crucial. Traditional
research and researchers have got to face up to these challenges
and there has to be a significant shift in the allocation of
research funding to enable user researchers to take forward their
work on more equal terms.

Peter Beresford is chairperson of Shaping Our Lives and
professor of social policy at Brunel University.

Background Reading

1 Peter Beresford, It’s Our Lives: A short theory of
knowledge, distance and experience, London, Citizen Press in
association with Shaping Our Lives, 2003, Available from Shaping
Our Lives, Unit 57, Eurolink centre, 49 Effra Rd, Brixton, London,
SW2 1BZ, e-mail:
Information@shapingourlives.org.uk
price £8.75 including postage