What doctors can't tell you

LORNA Hutchinson was 28 when she discovered that she had bowel cancer.

"I'd had surgery to remove part of my colon, but the doctor never used the C word. Six months later, I opened a letter referring me for more treatment, and the truth was staring me in the face."

For Lorna, it meant a second, more radical operation. She has now completely recovered, but says: "When I found out I had cancer, it would have been so nice to know about people who had gone through the same thing - just to hear how it had been for them."

The same idea had occurred to Ann McPherson, an Oxford GP and co- author of the massively popular Diary of a Teenage Health Freak.

McPherson, who had breast cancer five years ago, points out: "There are many excellent support groups, but people often want informal information.

Like the woman with multiple sclerosis unsure whether anyone else like her has had a baby, or the cancer patient who wants to know what chemotherapy is really like, rather than just getting the good spin that doctors put on it."

Together with Andrew Herxheimer, an expert in drug treatments, they came up with the idea for a Database of Individual Patient Experiences (DIPEx) which now, funded by the Department of Health and a range of healthcare charities, is a live website.

Hutchinson, whose job was co-ordinating meetings of health professionals, was brought in to present the DIPEx scheme to GPs and nurses, and find patients interested in telling their stories to be included on the database.

DIPEx is now up and running as a 24-hour support group which presents people's experience of serious illness as videos, sound or text. It's available via the internet or on CDs in public libraries, in GP surgeries and hospital departments. As well as helping inform patients, it aims to give health professionals a new insight into illness from the patient's perspective.

The first two conditions featured on DIPEx are high blood pressure and prostate cancer, which is anticipated to be the most common form of cancer within 20 years.

For each illness, there are between 40 and 50 patients' stories on the site, with a balance of ages and races.

"We go on interviewing people until no new major theme emerges," says McPherson.

INFORMATION can be searched for by topic, and contact details of support groups and sources of reliable medical information are given alongside patients' own stories. There are also plans to set up an interactive discussion forum.

Breast cancer, colorectal cancer and cervical cancer will be added to DIPEx in the coming months, then it will move on to cover other conditions, including epilepsy, diabetes and mental-health problems, encompassing carers' perspectives on Alzheimer's disease.

Public Health Minister Yvette Cooper has asked the team to provide information on maternity issues such as infertility and antenatal screening.

McPherson also plans to extend DIPEx to cover teenage cancer cases. "It can sometimes be very hard for young people, especially boys, to ask questions about their illness, whereas going on the web is now second nature for many."

DIPEx is looking for case histories of testicular and cervical cancer.

Anyone interested in contributing should call 01865 226672 or visit www.dipex.org

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