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

Few GPs support a new initiative that aims to empower the sick. Cassandra Jardine meets two long-term sufferers who argue that the medical profession has nothing to fear.

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.”

It was only in 1999 that a rheumatologist diagnosed fibromyalgia, a form of arthritis that strikes the muscles, rather than the joints. “I broke down in tears when he told me. I was so relieved that I wasn’t responsible for my own symptoms,” says Balliston.

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.

Certainly, an element of patient empowerment lay behind the initial idea, which was developed by Kate Lorig, a professor at Stanford University in California. In the 1970s, while working with arthritis patients, she was shocked by the paternalism of doctors. Suffering from a metabolic disorder herself, she developed the self-help course for patients, which has been adapted for Britain.

James Locke: Ill for 21 years

James Locke was one of the first chronic invalids to take it. A health administrator who was diagnosed with HIV in 1984, he has had 21 years to discover what it is like to live with his condition: the pills that have undesirable side effects, the near-death moments, the isolation and the patches of despair. Now working as an unpaid tutor on the expert patient courses, he has discovered that whatever the illness – diabetes, heart problems, cancer, kidney failure or MS – everyone’s experience is much the same.

“The first time a group meets, there is a powerful emotional moment,” he says. “Each person has to introduce themselves, their illness and explain how it affects their life. For some, it will be the first time they have been so open, but they soon find that the others share the same feelings of anger, fear and frustration.”

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.”

Locke found that becoming an expert patient didn’t mean becoming better informed about therapies and treatments – he had always kept abreast of developments. Nor did it mean going to see his doctor more often. The impact lay in a reduction of feelings of isolation and the realisation that he could make himself think more positively. “On those days when it’s cold and wet, instead of hiding in bed, I might now say to myself: ‘It’s a great day for the cinema.'”

The course made an even greater difference to Lillian Balliston. “I was a mess,” she says. “I was scared of my emotions because I felt that, if I expressed them, it would be further evidence that I was losing my mind. When I started going to expert patient meetings, all that disappeared. I’m still disabled, but I don’t feel so bothered any more, because I know my condition has nothing to do with my personality. I’ve realised how much life I still have.”

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.

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