End of the line?

The number of people with learning difficulties in long-stay
hospitals has fallen by 90 per cent in 10 years. But, as Patrick
McCurry reports, family opposition and financial concerns are
keeping the hospitals in business.

A generation ago tens of thousands of people with learning
difficulties were kept in old and forbidding long-stay hospitals,
out of sight from the public and with little opportunity to lead
normal lives.

But in 1992 the Department of Health issued guidelines that
confirmed government policy was to close long-stay hospitals and
move people with learning difficulties into supported
community-based accommodation. The guidelines were based on the NHS
and Community Care Act 1990, but even a decade later there are
still an estimated 1,500 people with learning difficulties in
long-stay hospitals in England and a further 3,500 in Scotland.

Scotland trailed England in closing hospitals during the 1980s
and 1990s but is now taking a more active approach and last year’s
Scottish executive white paper on services for people with learning
difficulties put forward a deadline of 2005 to close the remaining
hospitals.¹

Campaigners in England hope that the white paper from the
Department of Health on people with learning difficulties, expected
imminently, will also set a firm timetable for shutting the
remaining long-stay institutions.

Jean Collins, director of Values into Action (VIA), which
campaigns for people with learning difficulties, is highly critical
of the continued existence of long-stay hospitals.

“There’s still resistance within some NHS trusts and they’ll
come up with lots of reasons to justify delays, such as lack of
finance, but they should be doing better,” she says.

Others are more sanguine, pointing out that the long-stay
hospital population in England has been reduced from 65,000 in the
late 1960s to about 15,000 a decade ago and 1,500 today.

“We’re at the tail end of the closure process and it is
important that we don’t rush closures until proper community
facilities have been put in place,” says Brian McGinnis, special
adviser to the charity Mencap.

He expects the pending white paper to include a timetable on
closures in England, similar to that announced in Scotland last
year.

Jean Collins is more cautious: “We would like to see the
government state clearly the need for closures but whether that
will feature in the white paper remains to be seen.”

McGinnis accepts that there have been differing rates of
progress: “Some NHS regions have taken a lead and others have been
less dynamic. Often it’s been down to whether there has been a
forceful personality in charge who can push through closures.”

Sometimes relatives and hospital staff have blocked or delayed
closure plans. For example, the closure of Orchard Hill hospital in
Carshalton, Surrey, has been put off following a court victory by
parents of residents last year. They argued that the health trust
had not followed proper procedures in its attempt to close the
hospital, which had 119 residents.

Parents and relatives of hospital residents are often
unconvinced that community-based services will be suitable. This is
particularly true of older parents, whose son or daughter may have
been in a hospital for decades, says Collins.

But she argues that their opposition is often softened when
health authorities have effective community-based accommodation in
place and can show parents how much fuller their children’s lives
could be.

Tom Freeman, chief executive of the Horizon NHS Trust in
Hertfordshire, says: “Parents of people with complex needs or who
also have a physical disability are often concerned about whether
they’ll receive the care they need in the community.”

Central government was already moving towards a community-based
policy on people with learning difficulties in the 1970s, but it
was 1992 guidance that made the policy explicit.

A DoH spokesperson says: “In 1992 the DoH issued circulars
saying local authorities should work with the NHS to close
long-stay hospitals but there was no timetable and it was accepted
that the speed of closures would depend on local circumstances and
resources.”

The lack of a timetable and the qualification concerning local
circumstances and conditions have offered a loophole to those
opposing change, say campaigners.

Catherine Bewley, deputy director of VIA says: “The government’s
rhetoric on consumer choice has sometimes been interpreted as the
wishes of relatives and doctors rather than the people in the
hospitals themselves.”

Tom Freeman, who in January closed the third and last of three
long-stay hospitals in Hertfordshire, argues that the complexities
of closure and resettlement programmes for such large institutions
meant there were always likely to be delays.

“It’s taken us 15 years to close three of what were among the
largest long-stay hospitals in the country,” he says.

A special unit to plan the closures was set up in 1986, to be
subsumed into the Horizon NHS Trust when it was created in 1991.
Leavesden, which had 1000 residents, closed in 1995; Cell Barnes,
with 650, in 1998 and Harperbury, with 750, this year.

There have been several reasons why the programme has taken so
long, says Freeman. One is the large geographical area covered by
the hospitals and the fact that residents also came from outside
the county, such as from north west London or Bedfordshire.

There was also the challenge of building networks of contacts
among supported accommodation providers within social services, the
voluntary and private sectors.

Another factor was finance. “We relied on NHS capital to build
or adapt the community homes and that cash did not come through in
one go but over several years.”

Freeman stresses that resettlement cannot be rushed if good
quality supported housing is to be provided.

He says: “We wanted to make sure resettlement was carried out
properly and that meant a lot of planning and ongoing monitoring of
the arrangements we were putting in place. We were clear that if
that meant taking more time than expected we were prepared to
accept that.”

The Leavesden and Cell Barnes sites were both sold for
redevelopment, with the cash raised going towards the cost of
community housing.

Freeman says that the early predictions that community care
settings would be cheaper than running large and old-fashioned
hospitals has turned out to be not entirely accurate.

“When you look at the financial implications it is not just the
capital costs but the ongoing revenue costs that are important and
moving from hospital wards of 20 to 25 people to supported
accommodation for half a dozen increases day-to-day running
costs.”

There was some resistance to the closures in Hertfordshire from
parents and carers, as well as some opposition from hospital staff
who feel uncertain about their future.

“We did major consultations to try and assuage the concerns of
these groups but there’s always going to be some resistance and you
need to be determined to tackle it,” says Freeman.

Even though the conditions in the remaining long-stay
institutions are much better than in the past and some of the
examples of community-based treatment have been far from perfect,
many campaigners are convinced that the only way forward is through
resettlement.

“Conditions have improved a lot in the remaining long-stay
hospitals compared with how they were 20 years ago and they are
much less Spartan,” says Jean Collins.

“But by their nature they cannot offer people a full life. Even
though community-based services are sometimes not as good as they
should be they are still a huge step forward from hospitals.”

¹ The Scottish executive, The Same as
You, The Scottish executive, 2000

High cost of resettling people

The Norwich Community Health Partnership Trust is having
problems resettling people with learning difficulties from the
Little Plumstead Hospital outside Norwich. A strategy was launched
in 1995 to close the hospital, and the resettlement was supposed to
have been complete by last September.

Trust chief executive Chris Stevens says: “It feels very
frustrating as there are the double running costs of operating the
hospital and the supported accommodation.”

Problems arose because resettling residents turned out to be
much more expensive than first forecast and Norfolk Health
Authority says it needs extra funds to resettle the remaining
residents.

The health authority has been allocated funds towards capital
costs but not the ongoing revenue costs of supported accommodation,
says Stevens.

“We’re awaiting the white paper on services for people with
learning difficulties to see if the government is going to provide
more resources,” says Stevens.

He says that in some resettlements in other parts of the country
finance has been less of an issue because hospital residents have
been moved into supported accommodation for up to 15 people.

“Our resettlement plans are for groups of three to six people
living together, which is more expensive than some programmes,
although others have come up with individual packages of care
enabling people to live on their own so we’re adopting a middle
way”, he says.