Federation of Women's Health Councils' response to Linda Bryder's book
The Federation of Women’s Health Councils (FWHC) deplores the personal attack by Linda Bryder, author of “A History of the ‘Unfortunate Experiment’ at National Women’s Hospital”, on Dame Silvia Cartwright’s intellect and integrity as a judge.
In an interview with Kim Hill on Radio New Zealand’s Saturday programme (8 August 2009), Ms Bryder, a medical historian from Auckland University, claimed that Judge Cartwright, as she was at the time of the ‘Cervical Cancer Inquiry’ in 1987/88, got it wrong. Ms Bryder claims that Judge Cartwright was very taken with the article in Metro magazine, written by feminists Sandra Coney and Phillida Bunkle that sparked the Inquiry. Ms Bryder alleges that Judge Cartwright was handed an agenda and that ‘because Judge Cartwright had very little knowledge of obstetrics and gynaecology or medicine and therefore, understanding those complexities and uncertainties of medical practice I think she had difficulty with understanding Herbert Green’s evidence that he gave.’ She added that Judge Cartwright ‘was interviewing women who had cancer which is a horrible disease’ and it was because Judge Cartwright ‘was a very sympathetic listener’, as Ms Bryder claims, ‘she was taken by that, and that’s not the same as attributing fault.’
The FWHC sees this attack on Dame Sylvia as flying in the face of a judge of Dame Sylvia’s demonstrated integrity, intellect and experience; who was subsequently appointed as NZ’s Governor General; and more recently, an international appointment as a judge on the War Crimes Tribunal in Cambodia.
It is also an indirect attack on those medical advisors appointed to the Inquiry to advise Judge Cartwright – Professor MacKay from the University of Queensland, Dr Charlotte Paul, an epidemiologist from Otago University and Dr Linda Holloway, a pathologist from the Department of Academic pathology, University of Otago’s Wellington School of Medicine, and the international experts who provided testimony to the Inquiry. Since then both Dr Paul and Dr Holloway have become professors; Professor Holloway is Chair of the National Health Committee and is now a ‘Dame’.
Ms Bryder seems to think that any benefits attributed to the Cartwright Inquiry would have happened anyway, as part of the changing social context of the time. She seems to have overlooked the struggle there was to establish a National Cervical Screening Programme (NCSP) and the fact that it took 6 years before the legislation to establish the Office of the Health and Disability Commissioner was passed. Their establishment was not a foregone conclusion as she has claimed.
Despite the chequered history of the NCSP, and a report card that would still say, “Could do better, especially around Maori and Pacifica women’s participation” the evidence is clear the programme has significantly reduced the incidence of and mortality from cervical cancer. The death rate from cervical cancer almost halved among New Zealand women between 1988 – before the NCSP was established – and the year 2000. The most recent annual statistics for cervical cancer are for 2005, and show 154 registrations for cervical cancer, compared with 232 in 1995, and 54 deaths from cervical cancer as compared with 96 in 1995. Tribute must be paid to those pioneers of the programme who saw the need for nurse smeartakers and Maori smeartakers to provide services in non-medical settings, in culturally responsive ways to begin to improve participation rates.
The FWHC recognises the risks around over-treatment associated with cervical screening and other cancer screening programmes. However, instead of the ad hoc approach that was taken to over-treatment before the Cartwright Inquiry, we now have Cervical Screening Guidelines that incorporate the management of women with abnormal cervical smears. These Guidelines are the result of an extensive review of evidence, together with expert advice from a wide range of medical practitioners, epidemiologists and consumer representatives. The Guidelines are publicly available on the National Screening Unit’s website and the latest version sees the introduction of HPV testing as from 1 October this year.
Another important development since the Cartwright Inquiry has been a more organised and strengthened framework for Ethics Committees. Half of each Committee’s membership must be lay members. Research proposals must be submitted for scrutiny by an Ethics Committee before being approved. There is a strong focus on informed consent and protection of research participants.
The aim of the National Screening Unit’s ‘Women and HPV Study’, submitted for approval to the NZ Health and Disability and Cancer Council NSW Ethics Committees, is to find out what types of HPV are found in women with cervical abnormalities referred to colposcopy. It is intended to recruit 600 women to the study – they will be provided with full information and will need to give their informed consent prior to their participation in the study. Results are expected in mid-2010. This information will help the Ministry of Health improve the cervical cancer prevention programmes – screening and vaccination.
The FWHC acknowledges that with the introduction of the HPV vaccination, the environment will change yet again, and because we don’t have all the evidence of the vaccination’s impact on cervical abnormalities, there will be the ongoing need for research beyond the “Women and HPV Study” until such time as there is definitive evidence that the HPV vaccine reduces the incidence of and mortality from cervical cancer, as anticipated.
The Office of the Health and Disability Commissioner has not been without its detractors and there are still groups within communities who are under-represented in the HDC’s complaints processes. While FWHC doesn’t always agree with every decision coming out of the Commissioner’s office, the FWHC maintains its strong support for the Office, and particularly, the Code of Patients’ Rights which was enshrined in law in 1996. The Code with its strong emphasis on the right to full information and informed consent has been the catalyst for a steady improvement in relationships between patients and their doctors, nurses, and other health practitioners and providers involved with their healthcare. The right to have a support person generally goes without challenge these days. More effort goes into providing culturally responsive services, as does treating people with dignity and respect. HDC opinions arising from patient complaints have led to improvements in clinical practice and health and disability service delivery.
For Ms Bryder to be so critical of Sandra Coney and Phillida Bunkle and their openly feminist agenda suggests that the battles they had fought, along with many others in the women’s health movement, to get improvements to contraception, abortion and maternity services were not valued by the women of NZ. The FWHC stands by the hard work and courage of Sandra Coney and Phillida Bunkle in exposing all that was wrong at National Women’s Hospital. While the system today is far from perfect, who would want to return to a system that allowed vaginal examinations of anaesthetised women to teach medical students, without their consent; that allowed smears from the cervices of 2200 newborn baby girls to be taken without their mothers’ knowledge or consent; that allowed for the collection of more than 200 foetal cervices removed from stillborn babies who died in the hospital and babies who died in the hospital in the first few weeks of life, without the consent of the parents; that assigned women needing radiotherapy to treat their cervical cancer, on the toss of a coin, to one of the two treatment regimes being researched? It is to those sorts of practices, behaviours and attitudes that we must not return. Ms Bryder should not be allowed to undermine the gains that have been made for all New Zealanders using health and disability services.
The FWHC asserts Judge Cartwright got it right.