Lost in the system: the missing learning disabilities ‘patients’ on NHS campuses

It is often said in jest that the only people who know where some people with learning disabilities are living are finance officers. So many live in NHS care, in such a multitude of settings, that nobody really knows where they are. They are lost in the system.

Figures on the number of people living on NHS residential campuses are a case in point, and a problem given that the government has pledged to close all campuses by 2010. In its white paper published last January, Our Health, Our Care, Our Say, the Department of Health estimated that about 3,000 people were living on campuses. But figures given to Community Care reveal that the number is, at 1,683, significantly lower.

The new figure might stem from the definition of a campus resident including people admitted due to their need for assessment and treatment. These people then get stuck at the campuses for 18 months or longer, their treatment having finished. However, many primary care trusts have not established which people admitted for assessment and treatment fall into that category. So there may be many more people who need to be moved on than the official figure suggests.

A key aim of Community Care’s A Life Like Any Other campaign is that people with learning disabilities are supported to live independently, away from institutions with paternalistic cultures. Transferring people from NHS care into the community is not a straightforward process, as the delays in long-stay hospital closures have shown. Two hospitals remain open three years after they were meant to close.

Opposition to closures

In some cases parents and carers objected to the closures, fearing good alternatives would not be provided. Legal action was taken by parents and carers of people living at Orchard Hill, one of the two remaining hospitals.

Campuses were developed to replace long-stays, providing residential care for people with both learning disabilities and mental health problems or physical impairments.

Research by Eric Emerson, professor of disability and health research at Lancaster University found that people living on NHS campuses, who are classified as NHS in-patients despite the fact they are not ill, were likely to have fewer friends, less choice and fewer things to do than people with learning disabilities living in other types of accommodation. Nowadays it is generally accepted that people who are not ill should not be living in NHS care. Nevertheless, people with learning disabilities may not necessarily share that view, especially if they have lived for 40 years in the same place.

Co-national director for learning disabilities Nicola Smith says: “Some people might want to stay there because they feel safe there. But if people have never really known anything else, and have not been given a chance to try living in ordinary housing for many years, or ever, how will they know what they really want and what is possible for them?”

Changing mindsets

Kiran Dattani Pitt, chief executive of learning disabilities charity Values into Action, adds: “You need to remember that for years parents have been told ‘we can look after your child better than you can’ so it takes time to change that mindset.”

Sue Carmichael, joint programme lead in the DH’s Valuing People Support Team, recalls a case involving an older man who did not want to move from his long stay hospital. “We froze when he said he didn’t want to go,” she says. “It turned out that he didn’t want to move out of the area.” Other seemingly small details, such as food, layout of the building and routine, can all have an impact on whether someone is happy to move on, she adds.

All these things and others can usually be addressed so the person and their family are happy about the move. But it is a delicate process that cannot be rushed. Some PCTs may have just a handful of people, others up to 100. And given the complexity of the task and with less than three years to complete it, it is worrying they do not have an accurate idea of how many people they are dealing with.

Dattani Pitt, like many, is concerned the deadline for closing campuses will slip. She says the same issues that delayed the closure of long-stays apply to campuses and funding is chief among them. “Councils are wary about paying for resettling people in case they do not get the money back,” she says.

Yvonne Cox, head of Oxfordshire Learning Disability NHS Trust, says: “Sometimes there is a lack of trust between statutory agencies. There has been so much change in the NHS in recent years and staff changes. A lot of joint working arrangements are built on professional relationships because you tend to trust someone more when you know them.” The Oxfordshire trust has a pooled budget of £60m with Oxfordshire Council and PCT.

Cox adds: “We moved on 230 people around five years ago and, if I’m honest, for about 40 of those people we didn’t get it right first time.”

Ring-fenced fund

Senior policy officer for learning disabilities at social care charity Turning Point Ayesha Janjua says the government should provide a ring-fenced change fund for the programme, which may make councils less nervous about being left out of pocket. She adds that voluntary groups’ capacity to meet housing needs requires strengthening.

Dattani Pitt also points to opposition by local people who do not want supported housing for people with learning disabilities built “in my back yard,” as a factor delaying moves.

Janjua says PCTs and local authorities should be measured on their progress towards moving people from campuses to homes within the community. “They should be held to account and monitored on their progress either via a performance indicator or some other target. This is not a should-do. It’s a must-do.”

Janjua believes many of the problems that delayed the long-stay closures could be avoided this time round by involving people with learning disabilities, families and carers from the start so any problems can be addressed early on. “When it comes to judicial reviews brought by parents I can see that as a potential problem. On the other hand the government should have learned the lessons from the long-stays,” she says.

Cox adds: “People with learning disabilities manage change in much the same way as the rest of us, just more slowly.”

But we need to question whether they will be allowed the time they need, given that the deadline for closure looms and many PCTs are uncertain how many people in their care are classified as campus residents. Identifying the people who need to be moved is, after all, just the first step in what can be a long and complex process.

Further information
Values into Action
Valuing People Support Team
Oxfordshire Learning Disability Trust
Turning Point

Contact the author
Sally Gillen

This article appeared in the 14 June issue under the headline “The final days of the NHS campus”