Service users speak out

Are service users consulted too much, or should
consultations be more selective? Have your say by clicking
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“Why they use these big words I don’t know. If they
just spoke normally it would be a lot easier for everyone, not just
people with learning difficulties,” says Joan Scott, former
chairperson of the National Forum of People with Learning
Difficulties, writes Katie Leason.

It’s something we can all sympathise with. How many times
have you sat through a meeting planning your evening meal rather
than following an incomprehensible discussion? Probably more times
than you care to admit.

But while jargon-laden meetings are always a bore, when service
users have been invited to give their views it is not only a wasted
opportunity but also unfair. The language used to discuss issues
with service users can make the difference between a meeting being
useful or useless.

One practical tool that Scott finds useful in meetings is the
traffic light card system. Everyone present has three coloured
cards at their disposal. The red one can be held up to stop a
person talking over you, the orange one to signal that you
don’t understand and the green one to show agreement with
what is being said.

But it is not just understanding what is going on that is
important. In order to feel a valued part of any consultation
process, it is vital that service users feel included from the
start. Scott describes how she turned up at a meeting to find that
it had started some time earlier and that she had been invited to
only part of it.

“I was being used so that they could say ‘we had
people with learning difficulties on our panel’. I told them
that if Iwasn’t there from the beginning to the end then I
didn’t want to know and in the end they agreed I should be
there,” she says.

Rubber stamp

Clare Evans

Many users are of the opinion that consultations are a tokenistic
gesture. Clare Evans (pictured), president of Wiltshire and Swindon
Users Network, says that, although local authorities and health
organisations are required to consult users, it can sometimes seem
like a tick-box exercise. Often it is carried out at the end and
may even be pointless, such as rubber-stamping cuts to services,
regardless of opinion.

While those who work in health or social care know all too well
that it takes a long time to bring about changes, this can be an
added source of frustration for users in need of immediate results.
In 1995, older people in Wiltshire gave their views on services and
one thing they highlighted was that they wanted help with cutting
their toenails. However, it is only now that home carers are being
taught how to do this by chiropodists.

“It’s not much use if older people have to wait
eight years,” says Evans.

That users have expertise to offer is indisputable. Yet while
few experts donate their time and knowledge free this is often
asked of users. According to Evans, the £5 an hour that users
receive in Wiltshire has remained the same for years.

“It should be more but it helps people feel valued,”
she says.

But although they deserve to be paid for their time, becoming
involved in this sort of activity can also cause problems because
of the way that the benefits system works. Peter Beresford,
chairperson of user group Shaping our Lives, says that if an
individual becomes involved in consultations it can be wrongly
perceived that they are capable of going to work too. “But it
just doesn’t work like that,” he says.

And the problem of how best to be involved is not just one for
users. “There is increasing concern within trusts and other
social care organisations about how they consult. How do they take
on the responsibility to involve a range of users but not do
anything that puts people at risk with their benefits?” asks
Beresford.

Involvement can have positive and negative consequences.
Although the experience may give users a sense of empowerment, it
can come with high personal costs. Some feel an overwhelming
responsibility to help others with whom they can empathise and as a
result put themselves under enormous pressure.

Consultation overload

But for others there is a growing phenomenon that is becoming
known as consultation overload or fatigue. In some cases, users
have become so disillusioned that they are failing to turn up to
meetings. This can become a vicious circle.

“The people organising things say that it’s not
worth the hassle because people won’t show,” says Lisa
Andrews,* an independent living co-ordinator who has a visual
impairment.
“The question for me is whether or where you should draw a
line and actually say there’s no point in taking this
consultation further.

“It’s expensive to encourage people to come and take
part and you could be using the expense in other ways in which you
know it would benefit them. But at the same time there is an
obligation to continue to provide a forum where they can air their
views.”

It is a difficult call. For although you may know the views of
the one or two regulars who always attend meetings, the next
session could be the one where everyone floods in, she says.

Fed up

On the other hand, many are fed up with being asked their views
because they are not convinced they are being listened to, says
Mervyn Eastman, UK director for Better Government for Older People.
He thinks consultation should be avoided unless it is legally
required. Instead, users should be involved collaboratively from
the start of any process.

He also believes it is time that local authorities involve older
people on a wider range of issues, such as regeneration and
neighbourhood renewal.

“Social services have a good record on consulting clients
and patients on the specific responsibilities that social services
have, but that’s not enough,” he says.

He points out that the ways in which social services consult
with their users exclude other older people who are not in contact
with them, but even when users are involved it does not always
guarantee results. “Often local authorities will listen to
older people but they don’t hear,” he says.

This may be an all too familiar lament, but is there really any
excuse for failing to hear? If services are genuinely to improve
the personal experiences of their users will be invaluable.

* Not her real name

Tips on service user involvement

– Service users need to be involved from the start.
– Their priorities may be very different from what you expect
– don’t make assumptions.
– Professionals and users express themselves differently.
– Listen and value what they say – be aware that emotions may
run high.
– Check the suitability of the venue for a meeting.
– They may feel anxious about being involved.
– Establish ground rules about how people should behave.
– Some people may find it easier to talk in small groups.
– Stop dominant individuals from taking over.
– Try to give feedback after the event.