Cancer research muddle that put the fear of death into Sheila Hancock

Sheila Hancock will not forget the day she heard that the chances of her dying from her breast cancer had doubled. The prognosis came not from her doctor, or consultant, or nurse, but from the TV set in the corner of the hospital room where she was recovering from a gall bladder operation one autumn evening.

A survey the actress had been taking part in had been published and concluded that she and 333 other women using a complementary medicine centre to help them tackle their breast cancer were substantially more at risk of premature death.

Women across the country who had been using the Bristol Cancer Help Centre heard the devastating news in similar ways, after the survey results had been given to the medical journal, the Lancet. Although the survey was later found to be seriously flawed, the distress caused was very great.

"When I heard the news, I was appalled to begin with, and then when I thought about it, I realised how ridiculous it was," Ms Hancock recalls. "How could the treatment we received at Bristol harm us?

"I watched, listened and read in disbelief as members of the medical professions leapt with obvious relish to condemn complementary-alternative medicine and all its evil ways. It seemed as if this was the weapon to lance the pent-up boil of resentment festering against women who had strayed from the path of orthodoxy."

The experiences of those like Ms Hancock, who took part in that survey and then heard its results, are revealed in a book to be published this week, in which 11 of the women (four of whom have since died), write of what they went through. Their stories reveal disillusionment with mainstream medicine and concern at establishment rejection of complementary therapies.

"We wanted women to sing their song, to put some flesh on the statistical bones," said the book's editor, Heather Goodare, whoherself used the Bristol Centre.

The saga of the survey that went wrong began exactly 10 years ago, when the first patients using the Bristol Centre were questioned for a research study funded by the Cancer Research Campaign and the Imperial Cancer Research Fund, and carried out by the Institute of Cancer Research. Its aim was to compare patients who received orthodox medical treatment for breast cancer with those who went to Bristol for complementary therapy as well.

The report said that women who used the Bristol Centre were twice as likely to die and three times as likely to have cancer spread to other parts of the body. But later there were complaints that the research compared two groups that were not comparable, and in a letter to the Lancet the authors said: "We regret that our paper has created the widespread impression that the Bristol regimen directly caused the differences we observed in recurrence and survival."

Women at the centre had refused to accept the findings. "I thought the survey was ridiculous," said Ms Hancock, who was diagnosed as having breast cancer eight years ago and who was receiving radiotherapy when she went to Bristol. "We had to complete forms and the questions were superficial and foolish. I wrote on mine that it would have been a good idea to speak to me personally but nobody contacted me."

She had learnt that she had breast cancer shortly before starting at Bristol. "When I was diagnosed I felt blind panic. Mostly I was fortunate in my medical practitioners, although I too encountered thoughtless nurses who left me alone for ages in tiny cubicles stripped to the waist and shaking with fear and cold, or gossiped to one another over my head while indifferently flattening my breast into a scary machine.

"Bristol proved a turning point for me. I entered the place convinced I was doomed to die a rather nasty death and felt comforted, relaxed and determined to change what was left of my life for the better.

"The whole thing has been an ugly episode for the medical establishment and it has highlighted the arrogance in certain quarters that leads to a disregard of any clues that might be found in unexpected places, not least from the women themselves, which might throw some light on beating a disease they have so far lamentably failed to conquer."

She says that the medical profession should read the book. "It will certainly demonstrate that, until a cure is found, treating patients with respect should be an essential requirement of palliative care.

"The respect I found at Bristol was invaluable for me. I am convinced it has contributed considerably to the effort of my surgeon and oncologist to keep me alive for the past eight years."

She added: "I think there should be better controls over the way these things are done and the way charity money is spent. Like the other women I have not received an adequate apology for my wasted time and effort and distress."

5 'Fighting Spirit' is published by Scarlet Press, price pounds 8.99.