Making a brighter future

Gideon Burrows reports on an award-winning
service user review group in Surrey that took the insights of
people with learning difficulties to help improve the quality of
service in care homes.

It’s a sunny spring evening and members of the
Brighter Lives group are sharing a treat – steaming hot fish and
chips all round. It has been a busy month.

Brighter Lives, a small group of men and women
with learning difficulties living in Surrey, has been working hard
to organise a conference to explain how they reviewed services for
residents in eight care homes run by Surrey Oaklands NHS Trust, and
their findings.

The project won the learning difficulties
category at the Community Care Awards 2000, and part of
the award money was used to put this conference together. The
conference was held this week, and nearly 100 health and social
services managers were invited. All were keen to learn from the
group’s experiences.

It was back in September 1999 when quality
managers at Surrey Oaklands NHS Trust began exploring how best to
review its services.

Naturally they hoped a few people with
learning difficulties would be willing to join a review group and
they approached two local learning difficulty support projects –
1st Friday and 3rd Friday – for help. Twelve people volunteered and
the trust quickly broadened its plans to incorporate everyone who
wanted to take part.

The user-led work was carried out in parallel
with another group consisting of senior managers, staff and
independent people.

The 12 users, with the support of Lucy Darlow,
community projects manager at the trust, had a few months’ training
on service reviewing and how to identify abuse in homes. Following
this, the service user review group, now named Brighter Lives, was
ready to start work.

They visited the eight local care homes and
talked to residents, wanting to know what life was like for them.
They wanted answers to questions like: “How can I get help to do
what I want?”, “How can I make choices?” and “Will staff show me
how to do things?”

But they also felt it important to tackle
issues of abuse and independence in the care homes, and asked
residents what they would do if they felt something was wrong. The
best way to get these questions answered was simply to spend time
with the residents, to talk and make friends.

“They would open up to us and tell us one
thing, and the staff another,” says David, a member of the Brighter
Lives group. “They could open up because they knew we were like
them.”

Darlow says care professionals give the
impression that this kind of work is complex, but she maintains
that this is not the case.

“People with learning difficulties are not
another species, they are people you can sit down and talk to,” she
says. “There may be difficulties in communication, but we went out
with them, did role plays and used other ways of
communicating.”

The group quickly found that the quality of
life for people living in care homes depended on simple things like
free time, transport and pocket money.

“There was one home we went to and there
weren’t any drivers to take them out, so they ended up watching TV
all the time,” says Peter, a Brighter Lives member. “We were hoping
for improvements like more scope to go out for a walk, maybe on
their own.”

Gloria, another user reviewer, found people in
the home she visited thought the food was disgusting, and they
didn’t like the premises. Vincent was genuinely surprised that
people living in the homes had so little cash, and received only
token pocket money.

“Staff give them pocket money of £1 a
day, and I think that’s cruel. Why not give them £5?” he
says.

The group found that because residents had
little money, their activities were restricted. If a driver was
off, they had no money for bus fares, or days out – simple things
that help to break up days. It left residents more dependent on
their homes, and less able to make lifestyle choices.

The group also discovered that people wanted
to be involved in the running of their home.

“It may take more time and be a risk, but we
all take risks and people with learning difficulties should be
allowed to learn from taking risks too,” Darlow says.

When the service review was complete, Brighter
Lives’ contribution was praised for its pragmatic approach. They
had made real suggestions for improvement: for example, that each
house should have one person responsible for transport.

As Brighter Lives members share their fish and
chip supper, and make the final decisions about a slide
presentation they want to show at the conference, it’s clear that
they have gained as much from the process as the trust. They are
also putting together an information pack so other service user
groups can follow their example.

Yet Brighter Lives is eager to do more. “We
want to visit more homes,” says Vincent. “I’d like to go to my own
home to talk to them about pocket money.”

Darlow says the group had a real sense of
purpose. Friendships were struck between Brighter Lives members and
people living in the homes. One member in sheltered employment has
asked to start working at one of the homes as a “friend” to
residents there.

The group spent a lot of time together. There
was empathy because the members felt no particular allegiance to
staff in the homes; they were not reviewing from a staff
perspective. Staff can often miss things that do matter, and spend
time on things that don’t matter.

The group worked from a perspective that they
were adults and needed to be allowed to experiment and make their
own mistakes. They realised that a service-user based review was
not about flowery techniques, but spending time with people aside
from the daily grind.

“What came out was the value of one-to-one,
where someone provides time for you and values you,” says Darlow.
“Ultimately we’ve found out who are the best people to look at
services. It’s the people themselves.”

– Stepping Stones sponsored the Community Care
Awards 2000 learning difficulties category.

– All service users asked to be identified by
their first names only.

Project Profile

Project: Brighter Lives service user review
group (from the 1st & 3rd Friday groups).

History: Croydon Council set up the 1st Friday
group in 1997 to create a space where people with learning
difficulties are supported to talk about themselves and their
lives. The review group began in 1999, when members of 1st Friday
and sister group 3rd Friday were asked to plan and carry out a
review process of service provision by Surrey Oaklands NHS Trust.
Twelve members took part after training. Three sub-groups reviewed
eight homes over four months, then submitted a report to Surrey
Oaklands NHS Trust.

Funding: The 1st Friday and 3rd Friday groups
come under the job description of Lucy Darlow, who was at the time
employed by Croydon Voluntary Action. Her post was funded by Surrey
Oaklands NHS Trust, which later took on the funding of the groups.
The Community Care award of £4,000 was used to fund this
month’s conference and to produce an information pack detailing the
group’s experiences.

Staff: Three Surrey Oaklands NHS Trust staff
were involved in the service user review process.

Clients: 1st Friday and 3rd Friday have about
30 members each. Twelve members took part in the reviews, talking
to people with learning difficulties from across eight homes.

Contact: Lucy Darlow, Project Manager, Surrey
Oaklands NHS Trust, Oaklands House, Coulsdon Road, Caterham CR3
5YA. Tel: 01883 383707.