All About Multiple Sclerosis

More MS news articles for December 2002

A shot in the arm

You can learn a good deal about managing illness from fellow sufferers,5500,852166,00.html

Tuesday December 3, 2002
Donald Hiscock
The Guardian

Undesirable though they are, long-term health conditions do give their sufferers a certain expertise. And it's an expertise that has started to be channelled through adult education.
People with such chronic conditions as arthritis, epilepsy, multiple sclerosis, diabetes and Parkinson's disease are teaching fellow sufferers the best way to manage them and to improve their quality of life.

The Expert Patients Programme crossed over here from the US in the mid-1990s and was picked up in a number of areas. The Department of Health has put up funding for the programme to be piloted in every primary healthcare trust, and Northamptonshire will deliver it as part of adult education.

Kerstin Goulding, head of the county's Lifelong Learning Service, has been involved in the programme, which was developed by Stanford University, since its introduction into the UK. She was originally working alongside the voluntary organisation Arthritis Care, to see how these programmes would give people with such long-term illnesses the confidence, knowledge and skills to manage their conditions better.

"We have a licence from Stanford to train trainers and oversee the Living Well course," she says.

The Stanford course is very prescriptive and always follows the same six-week pattern of classes that last for two and a half hours. There are two leaders who also have a chronic condition.

"We don't call the team leaders tutors," Goulding explains. "The course is about sharing similar frustrations involved in living with any condition. We are not talking to those who attend about specific illnesses, but we are sharing our experiences of the effects of an illness."

The rigorous structure of the Living Well courses prevents the leaders from being too subjective in running them. However, it is this very personal experience of living with a long-term condition that encourages people to attend and stick with the courses.

Clinicians were initially sceptical. "But there has definitely been a shift in attitude," says Goulding.

Those delivering the Expert Patient Programme nationally take pains to reassure health professionals that there are no conflicts between medical advice and what is taught on the course.

Barbara Hogg and Brian Hughes are two of the tutors in Northamptonshire. Both have arthritis and deliver courses around the county.

They are aware that adult education classes tend to attract more confident people and want to try to reach everyone. One answer is to take the Living Well course into the community.

"We are doing our best to reach all those who would benefit from it," says Kerstin Goulding. "There is still, however, a question over funding for transport and for translating materials. Ethnic minority communities and those with learning difficulties are missing out."

Jean Thompson, one of two principal trainers managing it, says she understands that the voluntary sector might feel the government has just stepped in on the work they are already doing. But the programme is aiming to be as inclusive as possible, she adds. "One of the advantages of the Expert Patients Programme, which uses the same Stanford model, is that people from a wider spread of cultural, social and educational backgrounds are being reached," says Thompson.

Another advantage is just the injection of funding to provide the kind of resources identified by Goulding. "The big advantage of this programme is its simplicity," adds Thompson. She and Goulding are in agreement that this is a perfect opportunity for the health and education departments to work together on the provision of learning in the community.

And, who knows, maybe it will pave the way for a rethink about how adult education is delivered. Perhaps the days of classes in further education colleges are numbered, to be replaced by the kind of venues in which learners feel more comfortable. How healthy an idea is that?

© Guardian Newspapers Limited 2002