Twelve year-old Kerry McGil-vray stood at the end of her mother's bed, willing her not to die. It was the middle of the night and Mrs Lynda McGilvray was sleeping. Many nights passed before she became aware of her daughter's bedside vigils. 'I woke up and found Kerry there and I asked her what she was doing. She said she was watching just in case . . . she wanted to be there in case it happened - I died - during the night,' she said.
Kerry knew that her mother was going to die because she had heard it on the news. Women with breast cancer who were treated at the Bristol Cancer Help Centre, a world-renowned centre for complementary therapy, died sooner than women who had received hospital treatment only. She reasoned that it was just a matter of time before her mum died, like all the other women who had gone to the centre.
Few people had questioned the study that prompted those news bulletins and banner headlines in September 1990, causing Kerry so much distress that she needed counselling. Published in the Lancet medical journal, the study had been funded by the Imperial Cancer Research Fund (ICRF) and the Cancer Research Campaign (CRC). Both charities are known for the quality of the work they support. Eminent scientists at the Institute of Cancer Research in London supervised colleagues as they compared the survival rates of breast cancer patients seen at Bristol with those treated at the Royal Marsden Hospital, London.
Their conclusions were devastating: for the McGilvray family who had lived with Lynda's illness for nine years and were convinced that the Bristol approach was keeping her well, and for hundreds of other Bristol patients and their families. It appeared that Bristol women were three times more likely to suffer spread of the cancer than Marsden patients, and twice as likely to die once it had spread. It was suggested that the Bristol therapies, especially the diet, were to blame.
Isla Bourke, one of the women in the study, remembers wandering around the BBC newsroom where she worked in a daze. 'Everyone knew I had gone to Bristol, they were looking at me, wondering what I had done to myself. I felt so terrible.' Vicky Harris, another of the study cases, was travelling home on the tube when she caught a glimpse of the headlines in someone's evening paper. She learnt that she was twice as likely to die of breast cancer just because she had been to Bristol. 'I actually wondered whether I would make it home,' she recalled.
Mrs Harris, like all the other patients, had received conventional treatment for breast cancer. However, she sought help from Bristol because she needed more than the 'cut, burn or poison' approach of the NHS, which relied on surgery, radiotherapy or toxic drugs. The centre offered stress counselling, relaxation and visualisation techniques, healing and special diets. Suddenly, the women were being told that these therapies - these 'gentle therapies' - were actually harming them. When, two months later, the researchers admitted that their study was seriously flawed in several respects, and that the Bristol women in the study had more advanced disease than the Marsden women from the start, it provided little consolation - and received minimal publicity. The damage had been done; hundreds of cancer patients had been put through hell, and the centre's reputation was destroyed. A four-month waiting list was wiped out overnight, insurers were reluctant to renew its indemnity, and it faced closure.
The episode is probably one of the most embarrassing in British medical research history and the study has been used by one university statistician as an example of how not to do it. In May 1991 it was formally abandoned but the findings have never been fully retracted, nor has anyone admitted responsibility for the catalogue of errors and mismangement on all sides that led to its 'hyped' publication, less than halfway through the agreed five year study period. A suspicion that the medical establishment was 'out to get' Bristol for daring to challenge the orthodoxy has never receded - although it was strongly denied.
Founded in 1980, the centre offered the holistic approach, treating the whole person and not just the cancer. Some of the therapies were new, some were not, and some were already in tentative use at some hospitals. But Bristol caught the imagination of the press and public alike, and its popularity was assured after a BBC televison series. Thousands of cancer patients, disillusioned with 'inhuman' NHS treatment, wanted to learn more. They flocked to Bristol. In 1983 the centre received royal approval when the Prince of Wales opened a new wing at Grove House and gave a speech on holistic medicine which was widely reported. But Bristol made many mistakes in those early days; a lack of experience or just over-enthusiasm led to unsubstantiated claims for some of its treatments. And in the beginning the heavily promoted 'Bristol diet' was extreme, leading doctors to write of the 'Belsen-like' appearance of some patients. Bristol's arrogance irritated many who spent day after day treating cancer patients in overstretched hospitals - and it infuriated some. Had this played a part in its sudden, savage downfall?
Pat Pilkington, a co-founder of the centre, is sure of it. 'If not, why the haste to rush an incomplete study into print without (peer) review? It would never have been published if it had been reviewed first.' The centre was told it had grounds for legal action but to Penny Brohn, another co-founder and 'front' woman for the centre throughout the Eighties, the idea of one charity using its funds to do battle against two others was 'ethically unthinkable'. Bristol decided to concentrate on survival rather than retribution.
It was left to the patients themselves to take action. For the first time ever, a group of subjects joined together and demanded a retraction of the study in which they had been used. They formed the Bristol Survey Support Group and used their own money and thousands of hours to campaign for some sort of justice for themselves and the centre. In April 1992 they made a formal complaint to the Charity Commission, alleging that ICRF and CRC funds had been improperly used to support flawed research. Nineteen months on, the results of the commission's inquiry have yet to appear; a decision will be made by the board by the end of the year as to whether the findings should be made public. Both the ICRF and CRC, who saw preliminary drafts in August, declined to comment on the case.
Whatever the outcome of the inquiry the legacy of that infamous study has been a terrible one for all concerned. Professor Tim McElwain, the most outspoken member of the research team, committed suicide. Pressure of work was blamed. The reputations of two of Britain's biggest charities, which between them spend about pounds 90m annually on cancer research, took a serious battering. Heather Goodare, another member of the survivors' group, believes that the study 'effectively sabotaged' the dialogue between mainstream and complementary medicine.
As for the Bristol Centre, people are still wary of its work, and the charitable donations upon which it relies have fallen by as much as 70 per cent, according to Dr Rosy Daniel, a holistic GP who has worked there since 1985. 'The Chilvers report (named after one of the researchers) has actually stopped people coming here. It has cast a long shadow and it will take a while to overcome it.'
But perhaps the saddest outcome of all is the bitterness and anger of many of the Bristol patients towards the centre, which they still firmly believe in. They say they were abandoned at the time of the crisis, and disappointed by its failure to fight back.
Mrs McGilvray says she wondered if the centre believed it was doing something wrong, something detrimental to its patients. 'They never returned my call the day of the study . . . They were out of their depth.'
Isla Bourke says the women felt like 'pawns', used and abused by everyone. She is still closely connected with the centre, and has started a Patients' Panel to give them more of a say on how it is run and in future policy decisions. But she knows she is viewed by them as something of a 'troublemaker'. The centre would prefer to forget the 'Chilvers episode', while she is fighting to keep it in the public consciousness until someone, somewhere, takes responsibility for the tragedy.
She is unrepentant. 'In the early days Bristol made all sorts of wild claims about its work that it could not defend. They were naive to think that they could have got away with it, and in some respects they deserved what they got. I don't think the patients did.'
Join our commenting forum
Join thought-provoking conversations, follow other Independent readers and see their replies