"Expert Patients" With Fibromyalgia and Other Chronic Illnesses: Not Quite What the Doctor Ordered

"Expert Patients" With Fibromyalgia and Other Chronic Illnesses: Not Quite What the Doctor Ordered: "Lillian Balliston: Fibromyalgia patient

When Lillian Balliston was in her early twenties, she suffered a knock on the knee. It appeared to be a minor injury, but triggered terrible pains. Unable to wash or dress herself, she had to give up her job in personnel and move back to her mother's home. Sometimes, in the street, the pain was so bad that she would fall over and, even now, 15 years later, she is still so sore that she can't let her eight-year-old daughter, Isha, hug her. But the worst aspect of her condition, she says, is that the health professionals didn't listen to her.

"Whenever I went to the doctor, I felt criticised: I was told that I shouldn't be in such pain, so I must be depressed and should get out more. A physiotherapist gave me exercises to do but, when I said I couldn't do them because of the pain, I was told to make more effort. I was made to feel as if I was the problem and, eventually, I began to doubt myself so much that I was scared I would have to go into a mental home.

To understand the condition, one UK website suggests that you take the muscle that leads from your shoulder to your neck in your hand and squeeze hard; that's what it feels like all over the body, all the time. Living with that pain is miserable, but Balliston feels that her frustration with doctors and physios made her symptoms worse and that, because of self-doubt, she led an even more restricted life than she need have done. "If only there had been an Expert Patient Initiative in the early 1990s, my life could have been so different," she says.

The NHS's Expert Patient Initiative is designed to give patients with chronic disorders - some 17 million people; a third of the population - more control over their treatment. Balliston signed up for it when she read of a pilot scheme in her GP's surgery in White City, west London. The course involved six sessions of two and a half hours, covering exercise, diet and complementary therapies to how to communicate with health professionals.

Perhaps it is this last element of the course that accounts for doctors' lack of enthusiasm for the initiative. Only 21 per cent of GPs surveyed were in favour; more than half predicted that it will mean more work. Perhaps they envisage stroppy patients storming into the surgery and demanding the latest, very expensive drug, which the doctor doesn't think suitable...

Chronic conditions often mean the end of dreams, a loss of motivation and a sense of being out of control, he explains. 'On these programmes, we encourage people to dream again. Everyone has to set a goal each week and an action plan for achieving that goal. If someone is unable to get there - many overestimate themselves to begin with - the group looks at solutions.'

Since taking the course, Balliston goes out more, often with a colleague from the course to give her confidence. She has read up about fibromyalgia and her other problem, chronic pain syndrome, so she goes to the doctor less regularly because she feels more in control. This matches research that shows that expert patients use their GPs, and A&E and outpatients departments less than before; they are also more likely to take their medication.

Most important, Balliston has learnt to talk to medical professionals: "Whenever I had an appointment, I used to get upset and forget to ask questions that had been bothering me. Now, I feel able to put those feelings aside. I say: 'This is what I've done and this is how I feel. Is there another direction you can point me in?'" That doesn't sound too scary for doctors. With the initiative now expanding, Locke and Balliston hope that more GPs will realise that it is no bad thing if patients and doctors talk to each other on a more equal footing.

Source: health.telegraph (UK): http://www.telegraph.co.uk/health/main.jhtml?view=DETAILS&grid=P8&targetRule=10&xml=/health/2005/08/09/hexp09.xml © Copyright of Telegraph Group Limited 2005."