Learning lessons from the 24/7 carers

Society often fails to recognise when people with learning disabilities are ill, but who better to ask than the people they live with? Kate Hilpern looks at a pioneering course that is placing nursing and social care students with families

Like many families of people with learning disabilities, Carole Gerrett dreads the thought of her son becoming ill. "He can't communicate like other people and if, say, he has a headache, he won't touch his head - he'll start throwing things around or try to find somewhere cool, which means it's not always obvious," she says of Kevin, her 37-year-old autistic son. "Even when he was a boy, and chipped a bone on his arm, he didn't cry or try to show me. It only became evident the next day when we saw him carrying his arm around."

Because medical staff are rarely trained in working with people with learning disabilities - despite research showing such people are more likely than the rest of the population to suffer health problems - conditions often turn catastrophic before they are treated. "I frequently find that it's only when we hit crisis point that my son is diagnosed and offered any kind of remedy," says Gerrett. "That is a very difficult point to reach when you have severe learning disabilities, because it has knock-on effects on every aspect of your behaviour."

As for prevention of illness, she says it just doesn't happen. Even diligent social workers are generally unable to improve things. "Yes, they have the expertise in learning disabilities, but what they lack is the medical expertise." It's little wonder that research consistently finds that people with learning disabilities face health inequalities. As the government admitted recently in the community services white paper: "The NHS has historically not served such people well."

In a pioneering attempt to address this, however, parents like Gerrett are for the first time being enlisted to improve the training of both nurses and social workers. The course they will contribute to is a joint nursing and social work degree focusing on learning disabilities, beginning in September at Sheffield Hallam University. While there is nothing new about the qualification itself, what is claimed to be unique about the course is that it will place students with families, where they will observe, as well as offer support and assistance.

"This type of course is vital because it focuses on parents as mentors, which makes perfect sense when you consider how much knowledge they have," says Gerrett. She welcomes also the continuity that students will experience. "Like many people with severe learning disabilities, my son has different behavioural attitudes in the different places that he goes to. So it would be of little use for a student to visit him only in his day services, only at his respite care or only at home, because there are big variants in how he is. They need to see him in all contexts to gain any understanding about his life and his needs."

Dave Bosworth, senior lecturer at Hallam, says the six-week placement will enable first-year students of the degree course to get an unfiltered, unbiased view of the lives of people with learning disabilities. "What we didn't want was for placements to be arranged through agencies, who would give them their agency-speak and indoctrinate them in how they work with people with learning disabilities. We wanted our students to discover for themselves what it is actually like to have a learning disability in our society, which will provide a basis on which they can draw in their future learning and work."

For the same reason, students will not be placed in settings such as residential care homes. Rather, they will be placed within a family or, in a few cases, a supported-living setting. "Some people with learning disabilities won't live in a family, but in another environment such as supported living," explains Bosworth. "We may even place some students with people in independent living, although in these cases the individuals themselves would need to express a wish to have a student working with them."

Dual qualification

Students of the three-year course will graduate with a dual qualification in nursing and social work, which Bosworth says is in high demand. "Everyone - both in the statutory and voluntary sectors - sees the validity in learning disability services incorporating both nursing and social care," he says. "After all, a healthcare need becomes a social need, and vice versa, all the time with this group of people."

A classic example of this is cervical screening. Research shows that very few people with learning disabilities get access to screening for a variety of reasons - including parents being concerned about the anxiety it will cause and medical staff lacking the understanding needed to carry it out in an appropriate way for learning-disabled people. Professionals qualified as both nurses and social workers may be able to overcome such obstacles, thereby reducing the health risks for people with learning disabilities.

Graduates are expected to move into strategic roles, where they would be in a position to bring about genuine and wide-reaching change, says Bosworth. "I came to the university from a service in Nottingham, where we found it hard to find a manager of a multi-disciplinary team. Clearly, someone with a dual qualification would be eminently suited to manage these healthcare and social care professionals. Other graduates may decide to become either social workers or nurses, where their knowledge of the other area will still be invaluable."

Although other educational institutions offer the dual qualification, some of the founding universities - including Portsmouth, which first introduced the course in 1991 - have since dropped it from their syllabus. "We found the workload involved in qualifying as both a nurse and social worker was too much for the students," says a spokesperson.

Bosworth believes the solution lies in recruitment. "We make no bones about the high demands of the course and our recruitment is therefore rigorous," he says. "For those that are motivated, and recognise the demand they'll be in when they graduate, we think it will be an enjoyable course. And there is quite a lot of support throughout the course."

In fact, he has been impressed by the calibre of applicants. "They are very varied. We've had 18-year-olds with limited experience, but who are highly focused, through to a guy with an MA who has decided that he wants to work with people with learning disabilities. It seems to me that people who choose this course are not throwing their hat into the ring on a number of courses. They are saying: 'This is the course I want and this is the university I want to do it at.'"

David Congdon, head of campaigns and policy at learning disability charity Mencap, is "delighted" at the unique aspect of the Sheffield Hallam course for two reasons. "First, families tend to be the experts and, second, I think you can only really understand what it is to have a learning disability by observing it over a period of time," he says.

Mencap's own research consistently shows that people with learning disabilities are misunderstood when it comes to health. "For instance, people with learning disabilities very often answer 'yes' to a question, despite not having understood it," says Congdon. "They also display behaviour that gets misread. For example, if an individual is scratching themselves, the assumption made by a nurse who doesn't understand learning disabilities is that they normally behave like that. Therefore, there is no attempt to understand what's going on, even though the scratching is actually a result of pain. Because signals of pain remain unrecognised in this way, the diagnosis doesn't happen and, bluntly, people are dying because of it."

The community services white paper, Our Health, Our Care, Our Say, promises a renewed effort to meet a government commitment - not yet achieved - to introduce regular, comprehensive health checks for learning-disabled people. "These would help to direct people into the system, from which point onwards they will be better positioned to receive good-quality healthcare," the white paper says. Congdon believes this is commendable, but thinks there will need to be far more input from families if the target is to be reached.

Not surprisingly, Carole Gerrett agrees. "I have 37 years of experience, which has been gained 24 hours a day, seven days a week," she says. "What's more, I have had to fight hard for my son's healthcare needs to be addressed, which in itself has been a learning curve - with valuable lessons that I can pass on."

She recalls a time when her son had a serious bacterial problem in his stomach. "Because of the pain, he was becoming very, very challenging. I tried to get the problem diagnosed, but got nowhere. It was only when he literally went grey and leant over in agony, perspiring, that we were able to get a diagnosis."

Like most parents of people with learning disabilities who have struggled in this way, Gerrett is only too willing to do anything she can that might help the life of another family.