Bristol Cancer Help Centre

HC Deb 14 June 1995 vol 261 cc751-8

1 pm

Ms Jean Corston (Bristol, East)

I am grateful to have the opportunity to raise the subject of the Bristol cancer help centre and I thank my 73 parliamentary colleagues who have signed early-day motion 1203, standing in my name, on the subject of the centre's future.

The centre is a small Bristol charity. For several years, it developed an excellent reputation for the treatment of people with various types of cancer. It had a waiting list and worked in close co-operation with general practitioners.

It is extremely important to say that most people using the centre had already had what could be described as conventional or orthodox medical cancer treatment and that the treatment provided by the centre complemented rather than provided an alternative to conventional medicine.

The treatment offered by the centre included diet, which was approved by a national health service nutritionist, massage, meditation, group support and self-help. It could be summed up as an holistic approach to the treatment of and therapy for cancer. Some people have found such an approach missing in conventional treatment in the NHS and elsewhere.

In 1985, an agreement was reached that the Imperial Cancer Research Fund and Cancer Research Campaign would finance two research projects on breast cancer, to be conducted under the auspices of the Institute of Cancer Research. Two aspects were involved. The first involved the consideration of the survival rates of women attending the Bristol centre and the second an examination of quality of life comparisons between people who had been treated conventionally and those who had attended the Bristol centre with, or without, concurrent conventional treatment. Regrettably the second aspect—the quality of life survey—was never undertaken, but a protocol was agreed and among the signatories was Sir Walter Bodmer, the director general of the Imperial Cancer Research Fund.

The project was set up under the directorship of Professor Claire Chilvers. After two years of a five-year study, interim findings purported—I emphasise that—to show that women with breast cancer attending the Bristol cancer help centre fared worse than those receiving conventional treatment only". The survey went on to say that women from Bristol were nearly three times as likely to relapse, and almost twice as likely to die as those having conventional treatment.

The survey gave death rate figures for Bristol attenders. It was significant, however, that it never gave any death rate figures for control subjects and that, to this day, has not done so. It also said that there was a causal relationship between attending the Bristol centre, developing secondary cancer and dying.

Those figures were immediately questioned by many people, including Professor Karol Sikora, a well-respected and internationally renowned oncologist, and the Cancer Research Campaign's press officer, who, I understand, has some scientific training. Astonishingly, however, the Imperial Cancer Research Fund decided to hold a press conference at its headquarters in Lincolns Inn Fields. It was organised by its press officer and chaired by one of its committee chairpersons.

The matter attracted huge publicity on or around 5 September 1990. I saw an item on it on the 6 o'clock news. It was before my election to the House. I had known of the work of the centre and I was utterly astonished to be told that women who went to Bristol were much more likely to die. One could only guess the effect that that would have on people who had had, or who were undergoing, treatment at the Bristol centre.

On 8 September 1990, an article was published in The Lancet. In that article, the possibility that the Bristol cancer help centre patients may have had worse diseases to begin with was virtually dismissed, and it said emphatically that Bristol patients "fare worse". The description of the methodology was not as rigorously comparative and the subsets of patients were not as clearly distinguished as they should in such a research paper. The article also gave little impression of the survey being an "interim" study.

Of course that article had a devastating effect on the centre's finances, reputation and future, on the people who had been treated there and, in particular, on those who had taken part in the research. One said on a recent "Taking Liberties" programme on BBC television that she awoke in the early hours of the next morning to find her 12-year-old daughter standing by her bed. When she asked her for an explanation, her daughter said, "They said on television last night you were going to die and I thought that I ought to be with you." In the succeeding months, that child needed counselling because she thought that her mother was going to die.

The centre had been refused a list of the women who had taken part in the study, so it could not contact them to alert them. It is important to stress that, of the 333 women in the Bristol study, 112 had attended the Bristol centre for only one day. These people were therefore saying, in effect, that if one went to the Bristol centre for one day, one was two or three times more likely to die of cancer. That beggars belief.

Professor Claire Chilvers said on television: People coming to Bristol should be extremely worried". Professor McElwain said: Women who go to the Bristol centre relapse faster and die faster". Up to a year later, such statements were being repeated by Professor Michael Baum, who said that women from Bristol died faster, and Gordon McVie of the Cancer Research Campaign, who said that Bristol patients fared worse.

In November 1990, within two months of that press conference, it became clear that the research was, to put it no stronger, flawed, if manipulated in other ways. A specialist said on the BBC television programme that the people conducting the research had, in effect, compared apples with pears as Bristol women were more ill when they went to the centre for therapy and treatment.

It was not possible to have a randomised control trial because women who attended the centre did not do so in the way people attend an oncology department or are referred to a hospital. It is not a random matter. There should have been a matched sample so that people were aware that like was being compared with like in terms of severity of illness and prognosis. Surely the level of mismatch alone in the sample should have been sufficient cause for withdrawal of the paper on scientific grounds, but it was not withdrawn.

There was a gradual realisation that the results were, in the Imperial Cancer Research Fund's own words, "wrong" and that "the results were invalid". Sir Walter Bodmer has said: The research suffered from a disastrous mistake in the interpretation. That is surely a damning sentence from the director general of one of our most respected cancer charities. Sir Walter also said that it was not appropriate for a funding body to evaluate the research prior to publication.

Having signed a protocol, surely there is an obligation to have at least a proper and adequate period of review or some analysis of the figures before using them at a huge press conference with attendant publicity likely on national television and in all the newspapers—which is what happened. Some people in the medical scientific community will find it breathtaking that people signed a protocol and then said that there was no obligation to evaluate the research before publication. But the damage has been done. This research has never been retracted. No access has ever been allowed to the trial data: requests for such access have been refused.

There must be some sort of independent review of the trial data by a body such as the General Medical Council. The House should carefully consider referring this matter to the Select Committee on Health because a good deal of public money is involved and some patients from the control group are in Surrey and Sussex. They took part in the research in good faith and the research should be seen to have scientific integrity and to contain information on which we can rely.

In The Times Higher Education Supplement in 1993 Professor Garland, who is the chief executive of the Institute of Cancer Research, stated, albeit on a wholly different matter: If the damaging statements of a report arc shown to be false, the longer they remain uncorrected the stronger the case that the authors are acting maliciously. I agree absolutely with Professor Garland, who adequately sums up what many people consider to be the status of the interim and incorrect findings. The data were paid for by people who give to cancer charities, by those who shop in cancer charity shops, by the Government and therefore by the taxpayer.

At that stage the Bristol survey support group was set up. It consists of women who had treatment at the centre and who were outraged at the way in which the whole matter had been handled. It is a testimony to the empowering nature of the holistic approach pioneered at Bristol that those women were able to make contact with each other because there was no way that they could get access to names and addresses. They decided to do something about the matter and two women from that group are in the Public Gallery.

It is the first time in British medical research that a group of subjects have not only banded together but have demanded that the results of a study in which they were used be retracted. The members of the group subsequently took the Imperial Cancer Research Fund and the Cancer Research Campaign to the charity commissioners and won. The bodies were censured by the commissioners in January 1994 for inadequate supervision of the research, and the commissioners recommended guidelines on the responsibilities of charities that fund medical research.

There, in a way, the story rests but meanwhile the centre has funds to stay open only until September. Of course the flow of patients to the centre stopped completely because no reputable general practitioner could say to a patient, "Yes, I can unhesitatingly recommend the centre." They unhesitatingly recommended it before, but cannot do so now because of this puzzling research. Some patients decided to ignore the advice and continued to go to the centre, which is now attended by a reasonable number of people. It is often full but its funding has virtually dried up because people naturally took notice of what was being said by the reputable bodies which fund cancer research.

Although the centre has funds to stay open only until the autumn, the university of Bristol recently gave the centre accreditation to run courses for family doctors and other health professionals in the treatment of cancer patients.

I pay tribute to Bristol cancer help centre because I know people who have been there and they have said that it was the first time that they felt that they had some role to play in the treatment of their disease. They felt that they could take responsibility, be part of a decision process and could take steps to help themselves to get better. They found that it was possible to hand together for mutual support and, in a sense, be given hack some measure of responsibility for their own lives, mortality and future. I also pay tribute to the women's support group which has done a wonderful job in bringing the issue to public attention and in getting recognition for the inadequacy of the research.

I thank the BBC "Taking Liberties" television series which broadcast a programme on 23 May on the issue, entitled "Cancer Wars". In that programme there was, a reference to the people who run cancer, as it were, the cancer barons, who saw themselves in charge and greatly resented what they saw as intervention from people who did not provide their kind of conventional, orthodox treatment. Of course it is easy for conventional therapists to dismiss people who practise complementary or alternative therapies as quacks and the like, but they must take note of the fact that, increasingly, people find efficacy in complementary therapies of which there is increasing use. Some 35 per cent. of GPs now want information on complementary therapies and would be happy to refer patients. A survey in 1994 showed that 67 per cent. of health authorities purchased complementary therapies.

Government support is needed to develop the Bristol model as a subject for research because the work of the Bristol centre is quite splendid. We must discover whether it is possible—I think that it is—to foster the integration of this kind of approach into mainstream health care. Its worth has been recognised by many people, including Professor Sikora, who visited the centre and said that it provided a holistic approach to the patient which he and his colleagues had not provided in the past. They had been treating the disease and not seeing the patient and his role in quite the way that they could have done.

A body such as the General Medical Council should rule on allegations of misconduct in scientific research, and that suggestion is separate from the issues of retraction, withdrawal and referral to the Select Committee on Health. This matter must be resolved. A few weeks ago at a conference in Switzerland somebody said, "Well, you know, the Bristol figures have been called into question." That comment will be repeated until someone calls a halt and says that the figures were wrong. There is a terrible cover-up. People see the matter in terms of their personal or professional reputation, but there is a wider public interest and I hope that the House can address it. Stories based on that of David and Goliath do not always end with David winning, but this one certainly should.

1.19 pm

Lady Olga Maitland (Sutton and Cheam)

I rise to reply to the motion tabled by the hon. Member for Bristol, East (Ms Corston) on behalf of the Institute of Cancer Research, whose research facility is based in my constituency in Sutton, where it is linked to the Royal Marsden hospital. The institute is known worldwide and it has a reputation for excellence. It is appropriate, therefore, that I respond to the hon. Lady's remarks.

In the very brief time available, I want to tell the House that the institute feels that early-day motion 1203, on which this debate is based, is wrong in its view in almost every regard and is not founded on fact. If the House will permit me, I shall cite five reasons why it thinks that. The research was not invalidated by its methods. Such methods are widely used for evaluation of clinical outcome. Indeed, less rigorous methods have led to the much-praised Calman proposals to concentrate cancer care in specialist centres.

The researchers neither drew nor published unwarranted conclusions from their data. Their research is not invalidated by a subsequent correction. The outcome was broadly the same. There was no evidence that the Bristol centre therapy slowed or halted progress of breast cancer. The research at the institute was closely supervised. It neither started nor continued without expert and independent approval. Those who led the research were highly skilled and had excellent records. The report was offered for external and expert review prior to publication. It is interesting to note that no adverse comment was received.

The motion calls for the report to be withdrawn. None of the criteria for withdrawal of a research report is met; there is no proper reason to do so. Everyone in the House regrets that the Bristol patients were not informed of the results of the study before they were publicised. The Bristol centre—not the researchers—has taken responsibility for communication with its patients. It should he added that the centre had several weeks between receipt of the draft report and its publication, but the patients remained uninformed.

Ms Corston

Will the hon. Lady give way?

Lady Olga Maitland

indicated assent.

Mr. Deputy Speaker (Mr. Geoffrey Lofthouse)

Order. I must point out that the minutes on the clock are moving on and the Minister is not going to be left with much time to reply to the debate.

Ms Corston

rose—

Lady Olga Maitland

In that case, I do not wish to give way, Mr. Deputy Speaker, simply because time is so short. It is important to point out that the institute does not regard patients as pawns; they are regarded as people. That is why the institute staff conduct cancer research.

The early-day motion on which the debate is based is not only riddled with flaws, but inappropriate. The place to resolve doubt and uncertainty in science is not in this Chamber but in the practical arena among scientists, laboratories, clinics and experts. I trust that, in future, we leave serious scientific analysis to the experts—not to hon. Members in parliamentary debates.

1.22 pm

The Parliamentary Under-Secretary of State for Health (Mr. Tom Sackville)

I thank the hon. Member for Bristol, East (Ms Corston) for initiating this debate. The subject of it is clearly of great concern to many people, not only to those in her constituency but to many people around the country. The hon. Lady may wish to know that my noble Friend Baroness Cumberlege will meet Lord Ashley and representatives of the centre on 19 June.

The Government very much appreciate that many patients derive benefit from the use of complementary therapies, such as those pioneered for cancer patients at the Bristol centre. Complementary therapies clearly can play a very important role in enhancing emotional, psychological and physical well-being. As with any other treatment, of course, the use of complementary medicine for patients with cancer is a matter for discussion between the individual patient and health care professionals.

Hon. Members may have seen an article in the British Medical Journal last year, which described a research project looking at the use of complementary therapies by people with cancer. That concluded that a sizeable proportion of people receiving conventional cancer treatments also used complementary therapies, from which they derived psychological benefits. I am pleased that the medical profession is increasingly acknowledging that an holistic approach to treating patients is appropriate. That is particularly important in treating a disease such as cancer, which is always frightening for patients and their families and for which conventional medicine often does not have the complete answer.

The holistic approach to cancer care taken by the Bristol cancer help centre, exploring the potential for healing through a variety of complementary therapies, is one way of addressing the needs of people living with cancer. It seeks to meet the needs of cancer patients—mostly women with breast cancer—and their families by offering to help with the physical, spiritual, emotional and psychological problems of people who have cancer. Of course we support those aims.

As always, we have a duty to protect the public from inappropriate or dangerous treatments and, indeed, from false hopes. All forms of health care must be subjected to rigorous evaluation and audit. Sometimes difficult judgments have to be made without as much evidence as we would like. The Department is funding a research project being carried out by the medical care research unit at Sheffield university into the impact within primary care that complementary therapists have on such things as patient satisfaction, hospital referrals, prescribing patterns and drug costs and repeat attendances.

Five years ago, as has been said, a group of cancer charities funded a research project to evaluate the effectiveness of the holistic regimes practised at the Bristol cancer help centre. This debate has discussed the publication of that research in 1990 and its conclusion that women treated at the Bristol cancer help centre had poorer survival rates than those receiving only conventional treatments. I understand that it is possible that that research has contributed to the current financial problems facing the centre.

Following the conclusion, the Charity Commission set up an inquiry which showed that, although the arrangements by the charities concerned met a number of the requirements for the funding of research by charities, their procedures for the supervision of research and control of the results were not entirely satisfactory. That meant that charities could not be sure that charity funds were being properly applied in independent research. Recent media coverage focusing on the shortcomings of that research will doubtless affect public perception of the centre and attitudes to donations.

It is the responsibility of the whole medical research community and its sponsors—which include research councils, medical charities, Government Departments and industry—to ensure good practice in the conduct of research. The system operates on a largely self-regulatory basis through the principles of peer review and guidelines on good practice. Following the Charity Commission inquiry into the research of treatment and outcomes at the Bristol cancer help centre, the commission issued guidelines on 2 June 1994 which provide an agreed framework within which charities can operate when they support research. In addition, the Medical Research Council has recently set up a working group to re-examine the issue of good research practice.

Any retraction—mentioned several times in this debate—of the research study must remain for its authors, those bodies which funded it, and The Lancet in which the study was published. This is a professional matter and one in which the Department of Health has no jurisdiction.

It is of course open to the Bristol cancer help centre to seek funding support from health authorities whose patients are receiving care. If health authorities believe that complementary therapies such as those provided by the centre are safe, effective and of benefit to patients, they can use health authority funds to purchase them. It is, however, a matter for individual health authorities to decide, in the light of the needs of their local population and other health priorities.

I should add that the Government are committed to encouraging research into cancer. Priorities have recently been identified as part of the national health service research and development programme, which is expanding to take forward research in that and other areas. The Government do not, however, operate a research grants scheme that invites research applications in line with agreed priorities. Programmes of work are agreed following peer review. The programme of work in respect of priorities in cancer will be finalised shortly and further research applications may be invited at the end of this year.

I was aware of the Bristol cancer help centre and, some years ago, I read the "Bristol Diet" with great interest. I very much regret that these matters have arisen. I have no doubt that mistakes were made, which were aggravated further by some very sensational reporting of matters that are sensitive and should not have been entered into without full knowledge of the underlying facts.