2013 marked 25 years since the publication of the Cartwright Report. The role of feminists in the initiation and conduct of the Inquiry remains controversial. In the paper (1), reproduced below, Phillida Bunkle analyses feminist input into the Inquiry and events over the subsequent five years leading to implementation of Cartwright’s reform recommendations.
Bunkle’s analysis is based on careful consideration of original documents, particularly the three Submissions she, Sandra Coney, Dr. Forbes Williams and their counsel Dr. Rodney Harrison made to the Inquiry.
Bunkle argues that feminists provided the blueprint for comprehensive reform and that the ideas on which it was based were derived from their experience in the Women’s Health and Women’s Rights Movements.
‘Feminist input into the development of patient-centred healthcare in New Zealand’. Phillida Bunkle, Women’s History Magazine, no 71 Spring, (2013) 12-22.
Introduction Community-based women’s health groups emerged from the feminist movement of the 1970s and 1980s, particularly in North America and Australasia.1 They were the second wave of ‘recurring episodes of multi-issue women’s health activism’ in what has been called the ‘mega-wave’ of the Women’s Health Movement (WHM).2 The WHM greatly influenced subsequent medical reform, its feminist principles leading to a transformation of the relationship between patients and health providers. However, two arguments seek to minimise the contribution of the WHM. On the one hand, revisionists, hostile to feminism, argued that feminist criticism of the failings of the medical profession during the 1960s and 1970s was factually wrong, and that the extreme views expressed by feminists detracted from changes that were already underway. On the other hand, medical defenders of reform also minimised the contributions of feminists and suggested that alienation of the medical profession by feminists impeded change from within.
This paper attempts to correct recent historical scholarship, and contrary to both views, I argue, that the WHM was remarkably successful in achieving institutional reform and more effective patient-centred care. I substantiate my argument by considering the Cartwright Inquiry, which took place in New Zealand in 1987-8, and the subsequent Report.” Using this material, I show that feminists not only were correct in the conclusions they drew at the time but also authored a comprehensive plan that became the blueprint for subsequent legislative reform. I argue that this plan for reforming the relationship between patients and the health service arose explicitly from feminists’ experiences in, and addressed needs identified through, the activities of the WHM.
The WHM in New Zealand: health activism 1970-2000
In June 1987, New Zealand women’s health activists Phillida Bunkle and Sandra Coney published an article, ‘An Unfortunate Experiment at National Women’s Hospital’, in the Auckland magazine, Metro.5 The authors had met in 1973 at the First United Women’s Convention of which Coney was a convener and Bunkle a speaker.6 Both were active feminists (Coney edited Broadsheet, New Zealand’s feminist magazine) and throughout the 1970s and 1980s they participated in campaigns around sexual health, reproductive rights and maternity services.7 In 1984, they founded Fertility Action, which evolved into Women’s Health Action, becoming part of a loose grassroots network, which was spreading in ‘dozens of small towns and large cities’ across North America and Australasia.8
These groups asked questions unrecognised by medical institutions.9 Fertility Action’s first campaign was for chlamydia testing and treatment. Huge resources were being devoted to the development of IVF but none to preventing the infections which were the major cause of tubal infertility. The control of reproduction was publicly contested between the Religious Right and Family Planning Association, which prioritised population control.10 Fertility Action argued that the ‘choice’ to conceive and the ‘choice’ not to were equally valid and should be determined by women themselves.11 The protection of patient autonomy and physical safety were both essential values in health provision.12
Coney and Bunkle are criticised for inconsistent attitudes towards intrusive medical interventions. It is alleged that these inconsistencies show that they cynically selected issues to pursue a wider feminist agenda.13 However, the information Fertility Action disseminated on issues such as contraceptive safety, STD prevention, hormonal medications or surgery was based neither on a blanket opposition to medical intervention nor advocacy of naturalistic therapies but on pragmatic assessments of harm or benefit.
Like their American counterparts, Bunkle and Coney’s organisation aimed at institutional, attitudinal and policy change; like most women’s health groups, they relied entirely upon voluntary activity and limited community resources.14 This guaranteed their independence but created institutional weaknesses characteristic of much of the second wave of WHM.15
Commentators suggest that internationally the WHM contracted during the 1990s in a climate of ‘vociferous pressure’ to depoliticise advocacy in response to changes in health ownership structures and the corporatisation of the state. Corporatised health-care adopted the ‘language of empowered consumers [as] part of the neoliberal agenda … contribut[ing] to a depoliticisation of health care advocacy’; it commodified women’s health, translating the power discourse into the language of the market place.16 In the 2000s, commercialised marketing saw women’s health transformed from a movement for collective political change into individualised fitness and lifestyle programmes.17
With the passage of the State Services Act in 1987, New Zealand introduced New Public Management (NPM) to the developed world and, through the 1990s, it provided the proving ground for the neo-liberal policy agenda. Coney and Bunkle consistently criticised the neoliberal political economy which was driving health policy, and which saw most state health expenditure distributed via privately-owned, for-profit, GP businesses.18 The success of this policy in overcoming doctor resistance to privatisation means that it is now being vigorously pursued in Britain.19
By the 2000s, Women’s Health Action was producing health information, running an information line and supporting health consumer’s rights; it lobbied health officials and advocated institutional changes’.20 Like other groups, while still nominally independent, the organisation had adapted to corporatisation and contracting out.21 However, by this time, Bunkle and Coney had moved on to wider political engagement opposing neo-liberal health politics in general.22
The WHM in New Zealand: institutional background
The WHM of 1970s and 1980s should be understood in the context of the institutional structure of medicine at the time, which reflected the dominance of university teaching hospitals in the production of medical knowledge.23 From the late 1930s, and greatly accelerating post-World War II, medical knowledge-making resulted from a conjunction of clinical research, laboratory science and applied technology.24 The post-graduate departments of university teaching hospitals brought together a supply of ‘clinical material’ and advanced research laboratories. Technical progress was rapid and widely assumed to justify the application of experimental treatments. Hospitals also provided a ready supply of ‘teaching material’ to facilitate the dissemination of these new and powerful technologies among the profession. They were hierarchical institutions dominated by consultant-professors. Access to treatment was largely determined by clinicians, supported by the doctrine of ‘clinical freedom’ which protected the autonomy of senior clinicians. The few managers had little influence over clinical priorities.
Auckland’s National Women’s Hospital was a typical post-war, specialist hospital, state-funded and dominated by Auckland University’s Post-Graduate School of Obstetrics and Gynaecology. Within the hospital-based system of knowledge production, prestige was determined by the research record of all powerful consultant-professors. The head of National Women’s was Professor Dennis Bonham, who chaired both the Hospital Medical Committee and the Ethics Committee. Bonham was recruited from Britain where he played a key role in research which justified bringing all births into the domain of hospital specialists.25 In New Zealand, he led the argument against independent midwives and midwifeled maternity hospitals.26
It was no surprise that a hospital primarily concerned with reproduction became the flash-point for challenges to medical power: women bore the brunt of the sexual revolution yet predominantly male doctors determined access to fertility control, while a generation of young women whose expectations of autonomy were shaped by their access to secondary and tertiary education became disempowered patients when giving birth. Both Coney and Bunkle, with many of their contemporaries, shared their appalled reaction to patronising treatment during childbirth.27 Furthermore, patients who questioned, or attempted to refuse, treatment were regarded as irrational and could legally be denied further intervention. Auckland Hospital Board by-law 4.5 stated, ‘Unreasonable refusal to comply with treatment programmes shall render a patient liable to discharge from hospital’, ‘unreasonable’ being defined solely by the consultants. Some patients feared that they could be denied future care.28 In the 1970-80s, in reaction to the hegemony of doctors, patients’ rights issues were brought into public debate largely by the WHM. Feminists analysing the connection between personal experience and social reality concluded that the sharing of experiences as patients created a strong validation of a common reality.29 By contrast, in medical knowledge, personal experience was seen as contaminating truth. Patients’ experiences were not part of official medical knowledge and were dismissed as private and irrelevant.30 The WHM warned that such objectification of patients could lead to inhuman and sometimes unethical treatment.31
The road to Cartwright: the ‘Unfortunate Experiment’ article
Bunkle and Coney’s ‘Unfortunate Experiment’ article, written in 1987, described unethical research conducted at Auckland University’s Post-Graduate School of Obstetrics and Gynaecology.32 They had been alerted to the experiment when a supporter drew their attention to a 1984 medical article providing a retrospective analysis of cases.33 The ‘Unfortunate Experiment’ article explained that some women with precancerous carcinoma in situ of the cervix (CIS) or genital tract, now known as CIN 111, had, without their knowledge, received only repeated diagnostic biopsies and cervical smears. They had been left untreated or undertreated in order to study the extent to which they developed invasive cancer. Some women had dozens of surgical procedures not directed at eliminating disease. Many developed invasive cancer and some died. The article revolved around the experiences and case notes of patient Clare Matheson who developed invasive cancer after initially having only diagnostic biopsies.34
The article provided evidence that, in 1966, the study of CIS had been formalised into a research programme. By the early 1970s, although deaths had occurred and the dangers of developing invasive cancer had become apparent, National Women’s Hospital did not formerly end the research or act to save the remaining patients. Instead, it marginalised critics of the programme, even among senior staff. The Hospital Board, senior clinicians and professors of Auckland University, particularly Bonham, were implicated in responsibility for the research and its consequences.
The New Zealand government responded to the Bunkle and Coney article by setting up a judicial inquiry entitled ‘The Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital and into Other Related Matters’. Headed by District Court Judge Silvia Cartwright, it became known as the Cartwright Inquiry. The processes and evidential rules of a judicial inquiry are those of a court of law, but with additional powers of independent investigation. Significant Parties retained senior counsel and vigorously cross-examined witnesses. Unlike similar inquiries in Britain, such as the Ledward Inquiry, parties representing consumer interests participated throughout.35 Matheson, Coney and Bunkle were represented at public expense by noted civil rights lawyer, Dr Rodney Harrison QC, and the women maintained a constant presence through the six months of the Inquiry, supported by public donations.
The Inquiry developed an independent evidence base from analysis of the clinical records of hundreds of women. These records were available to all parties and were the basis of rigorous cross-examination, particularly of international medical experts. The findings and recommendations of the Inquiry were published by the New Zealand Government in August 1988, in what has become known as the Cartwright Report.36 The Report found that the allegations made by Bunkle and Coney in the original ‘Unfortunate Experiment’ article were largely correct, and the New Zealand Government accepted the findings, agreeing to implement its full recommendations.
The road to Cartwright: Cartwright’s recommendations
The major recommendation from the Inquiry was that the health system should be run in the interests of patients rather than professional interest groups.37 The Cartwright reforms were based on five related innovations:
• a human rights approach to patients’ rights;
• an understanding of ‘treatment’ which extended beyond medical procedures to respect for patients’ dignity, including their right to effective communication and informed consent;
• the development of a legislated Code of Patients’ Rights;
• an independent Health Commissioner, external to the medical professions, charged with adjudicating medical providers conformity to the Code, enforcing its provisions and compensating victims;
• the employment of independent patient advocates.
The Cartwright recommendations also included the establishment of independent ethics committees, composed of half consumer representatives, half professional scientists and a lay chair. The focus of the committees should be to protect patients.
This New Zealand system of patients’ rights which eventually became enshrined in law and external to the medical profession remains unique. Despite this, it is widely regarded as a model for reform. The move toward a patient-centred health system also led to the participation of consumer representatives, including Maori and Pacific Islands women, at many levels of health policy decision-making, particularly in the development of the recommended national cervical cancer screening programme.
Feminist submissions to the inquiry: The First Submission
Community and women’s health groups made submissions to the Inquiry urging the case for reform. Coney and Bunkle made three submissions. This paper considers these in detail because they were the source of important Cartwright recommendations and accurately record the feminists’ conceptual and analytic input into the Inquiry and its outcomes.
The First Submission of Evidence, written by Coney, Bunkle and medical doctor, Forbes Williams, and delivered by Coney early in the Inquiry, brought the patients’ experience to the centre of proceedings.38 It documented numerous examples of cervical smears ‘suggestive’ or ‘conclusive for malignancy’ and other pathological findings which had been ignored or merely followed by further diagnosis.39 The primary impact of this evidence was not to enumerate failings but to articulate patients’ experiences. This submission implied that objectification of patients was linked to their inhuman treatment: one consequence was to expand the definition of ‘treatment’ and focus the Inquiry on patient welfare rather than upon narrowly-defined ‘medical facts’.
The First Submission aimed to embed the patient point of view at the centre of the Inquiry by bringing the submerged reality ‘of this experience … before this committee of inquiry’.40 Patients ceased to be an abstraction: until then, their ‘personal’ stories had remained in the unofficial world of anecdote; now they became the touchstone of judgements about the adequacy of the medical system. The effect of this submission was to reverse the assumed order of reality and it was this shift which was to be the most momentous outcome of the Inquiry. It originated in the feminist analysis of ‘personal’ life shaped through the structures of power and was a concrete example of the WHM perspective in action.41
The First Submission argued that the first Term of Reference of the Inquiry on the adequacy of treatment of CIS:
…is too narrowly drawn. The question isn’t whether CIS was adequately treated, but whether women were adequately treated. A doctor may cure a patient’s condition while mistreating the patient … clinical management … is not the only question. The concern of the Committee should be on how women were treated, not on how a certain collection of cervical cells were treated.
… Informed consent is integral to adequate treatment. Adequate treatment concerns both what the women experienced, and what they knew … it involves the whole pattern of interaction between the hospital and the women … An adequately treated person is not left impotent, vulnerable, nervously wondering what had been done to her, or anxiously, even desperately wondering how to find out.42
Telling women’s experiences emphasised what medical case histories usually filtered out; the practical realities of money, gender and race came into view. The vulnerability of patients uninformed about their condition and unable to protect themselves became clear. The First Submission established that the invisibility of patients was a safety issue.
The effects of this ignorance were widespread and on-going, and many victims only came to light because of the publicity surrounding the Inquiry.43 Barbara, for example, only discovered after reading the original Bunkle and Coney article that she had been treated for CIS: ‘I was stunned, I was so shocked to find out that I had been treated for something that I did not know I had … I feel betrayed’.44
The Submission argued that when patients are not given information,
… it renders them powerless and thus ensures acquiescent behaviour, but passivity is ensured at great cost. It means that they have no basis on which to make decisions; they cannot make choices. It violates their autonomy and their basic right to the integrity and control of their own body. It places them at grave risk. 45
Nor were the risks confined to the development of invasive cancer. Pauline, for example, first attended the hospital the year the Inquiry began for what she understood was ‘a simple follow up for a routine smear’. She was ‘flabbergasted’ when a professor took biopsies: ‘I knew nothing of what they were doing’.46 The consultant ordered cryotherapy, ‘I did not know what it was … they would give me no information’.47 Pauline’s notes showed she had been trying to conceive but she was not asked about possible pregnancy. She later miscarried but when she asked the house surgeon if the treatment she had received could be the cause, he ‘looked uncomfortable and said he could not tell her … the doctor who finally came was off-hand and down-right rude’.48 Despite repeated requests, her questions remained unanswered until she accessed her case notes through the Inquiry. She said there was ‘no one I could talk to about all this. The Inquiry has given me a voice’.49
The follow-up involved in the CIS research placed enormous stress on many women. Ignorant of their condition, they had no motive to repeatedly attend the hospital. For example, Mrs W., a Maori mother of sixteen children, first attended in 1970 with a smear ‘conclusive for malignancy’ and suggestive symptoms. A cone biopsy, known to be incomplete, showed ‘fairly extensive CIS with microinvasion’. She was in severe jeopardy but did not know it.50 Mrs W. became pregnant with her seventeenth child; a tubal ligation was carried out, but not a hysterectomy and her smears continued to be ‘strongly suggestive’ or ‘conclusive of malignancy’.51 She began missing appointments, ‘… owing to financial difficulties’, but the only letter to her GP gave no reason to alert him to the danger his patient was in.52 There is no further record of Mrs W. until 1981 when the hospital notes state she has ‘obvious carcinoma of the cervix’. She was finally treated with radiation but by 1982 the notes record that ‘she looks and feels exhausted … looking after three teenaged children … [is] … now beyond her. Clearly she has considerable metastatic disease’. She died four days later. Associate Professor Herbert Green, the principal researcher, noted that after 1973, ‘she could not be got back to the clinic’, effectively blaming her for her disease and death.53
The First Submission ended with a detailed account of the treatment of Joyce, a thirty-nine year old widow, written by Dr Forbes Williams.54 Joyce had received a tubal ligation following the birth of her third child. In 1961, she was admitted for a cone biopsy following smears ‘conclusive for malignancy’. The pathology report showed incomplete removal of the lesion with ‘undifferentiated carcinoma of the cervix’ and possible ‘early microinvasion’. In other words, like Mrs W., she certainly had CIS and possibly invasive cancer. In the following nine years, Joyce made twenty-two hospital visits and was treated for many neurologic symptoms, including pain and a ‘neurogenic’ bladder. By 1972, she was in ‘great distress and pain … she even talks of suicide the pain at night is so bad’.55 Her long journeys to the clinic resulted in more surgical biopsies, while smears ‘strongly suggestive’ or ‘conclusive for malignancy’ continued. By the mid-1970s, Joyce was on Valium, sleeping pills and antidepressants, but the abnormal tissue had still not been definitively removed. In 1978, after seventeen years of investigation, Joyce probably became aware for the first time that she had invasive cancer. She endured radium treatment, but a year later cancer had invaded her bowel, and in 1982, during her sixty-fifth visit to the hospital and after twentyone years of almost continuous investigation, more than fifty vaginal exams and twenty-four major procedures, she died, but with her uterus still intact.56 When Coney finished reading Joyce’s story, counsel were visibly shaken. From now on the Inquiry was about the women.
Feminist submissions to the inquiry: The Second Submission
Having established the extent of the problem and the primacy of the patient interest, the task of the Second Submission of Evidence was to analyse how and why the institution had been unable to right itself. The Second Submission, written by Coney, Bunkle and Williams and edited and compiled by Bunkle, analysed the failure of medical accountability and recommended comprehensive reform.57 It began with an analysis of the hospital power structure and its disempowering impact on patients and medical students.
Analysis of the socialisation of medical students, contributed by Williams, used the idea of the ‘hidden curriculum’, familiar to feminist educational circles at the time, to underline the significance of teaching vaginal examinations and IUD insertions on anesthetised, non-consenting patients.58 This curriculum teaches ‘a one sided mode of interaction [in which] the patient is irrelevant [and] the doctor’s interests take priority … the conscious presence of the patient is threatening or a nuisance. Students “learn” to act as if it would be preferable that the woman was not there’. Further, it advises students to construct ‘a separation of the sentient, thinking person from their body, especially from “down there”’. Students are given the impression of being ‘initiated into a secret’, a secret withheld from the patient.59
The Submission described the experiences of one woman having a colposcopy examination where the patient was especially exposed and vulnerable. She declined to have students present. However, when some students arrived she found herself, ‘being scrutinized by a number of pairs of eyes’. When she objected to this, instead of the students leaving she was ‘offered a cloth to put over her face’.60 As the Submission noted: ‘It is her response which is questionable, not the doctor’s presence. [The doctors] approximate to the situation where she is anaesthetized, rather than by seeking her consent or giving her some control of the situation’.61
The Second Submission located the problem in the ubiquitous power of a profession used to making policy decisions unilaterally, across the whole of healthcare, including the rights of patients. Doctors claim to have their patients’ best interests at heart, but it is they who decide what those interests are, and this, the Submission claimed, ‘renders us passive and infantile. We are not judged to be adult enough to make out own decisions and understand information about our own health’.62 The Submission concluded that the autonomy of the medical profession should be dismantled, with accountability determined not by ‘paternal goodwill’ but as ‘a fundamental requirement of legitimate action’.
Drawing on Carolyn Faulder’s book, Whose Body is it?, the Second Submission went on to consider informed consent as ‘a first step towards protecting patients’.63 It identified the features of consent common to treatment, teaching and research, arguing it was of first importance to a patient to know where to turn for information and to understand who it is who makes the decisions. The patients:
… may be told repeatedly that the people they ask are not allowed to give them the information they seek, but they may not be told who can, or they may have no access to them. This bewilderment creates quite unnecessary anxiety … and a sense of being entirely deprived of the most basic rights to understanding and self-determination which can be very frightening and makes the patient unnecessarily vulnerable.64
Informed consent, the Submission determined, should also incorporate the right of a patient to terminate treatment without jeopardy; the right to ask questions and demand disclosure of the practitioner’s personal bias; the legal right to access medical records; and the provision of mechanisms for facilitating understanding, including translation for those, such as Maori and Pacific Island people, whose language is not the dominant one. Most importantly, in all circumstances, consent should include ‘a statement of the legal rights of the subject including the right to compensation for injury’.65 This analysis of consent moved logically to advocate the need for a non-voluntary Bill of Rights, enforceable in law, providing adequate means of redress and backed by patient advocates independently employed to support them.66
The Second Submission also provided a detailed examination of failures to gain consent from research subjects. The Minutes of the National Women’s Ethics Committee had become available through the Inquiry and clearly showed that in-house ethics committees were haphazard and ineffective.67 Their structure and function needed radical overhaul including the introduction of effective mechanisms, a common national framework and legislated powers. By the time the Second Submission was presented to the Inquiry, public opinion had already been mobilised by the revelation that the principal researcher, Herbert Green, had taken cervical smears from 2,200 girl babies born at the hospital without parental knowledge. He had also collected cervices from still born and dead neonates without parental consent. The claim by some hospital staff that patients entering a teaching hospital gave ‘implied consent’ to anything that was done to them only served to reinforce public concern.
The Second Submission focused on formulating achievable and effective policies to reform common practice.68 It proposed a two tier process of ethical oversight of research. The first stage of scientific assessment by experts would ensure the scientific validity of research; the second stage, evaluating both treatment and research, would lie with Ethics Committees which had a clear focus on patient protection and a majority of lay representatives, ‘preferably chosen by the people they represent and definitely accountable to them’.69
The Submission discussed the deficiencies of the various mechanisms said to ensure professional accountability: there were two possible avenues within the hospital system, a peer review process and the Hospital and Hospital Board complaints procedures. The Submission provided evidence of the inadequacy of both. There were also two possible avenues for complaint external to the hospital system. The first was the Medical Practitioners Disciplinary system, for complaints about individual practitioners. Clare Matheson’s experience showed that this was costly, legalistic, dominated by professional self-interest and unlikely to result in systemic improvement or public acknowledgment of error and provided no compensation for patients.70
The second route for medically-injured patients was a claim to New Zealand’s unique no-fault Accident Compensation Corporation (ACC). While ACC could award compensation, the grounds were limited and the sums likely to be miserly and paid after considerable delay. The ACC system removed the possibility of civil action for compensation through suit for negligence. The Second Submission argued that subjects of the ‘Unfortunate’ or other experiments were afforded no real protection. Medical practitioners were effectively protected from the consequences of injurious treatment of patients. There was urgent need for comprehensive reform providing substantial redress for medical injury and realistic compensation.71
Feminist submissions to the inquiry: The Third Closing Submission
The challenge to devise an innovative structure which plausibly remedied the failings identified in the Second Submission was met in the third Closing Submission. It was prepared and presented by counsel, Dr Rodney Harrison.72 The Closing Submission spelled out innovative proposals for a human rights approach to patient protection independent of and external to medical professional bodies. No other jurisdiction at the time provided an alternative model to professional self-regulation or incorporated legally enforceable rights for patients.
The Closing Submission made a case for comprehensive legislation as a ‘matter for the national interest’ rather than internal reform of particular institutions.73 Legislation in respect of medical research should, ‘… be coupled with legislation dealing with “Patient Rights”, and [with] … informed consent to treatment, and … the use of patients for teaching purposes … A corollary of reform should include … the establishment of Patients Advocates and provision … of full-time interpreters to assist those patients who have language difficulty’.74
A number of agencies endorsed the need for legislation.75 The Ministry of Women’s Affairs proposed a statutory code of patients’ rights but suggested no particular model of legislation.76 The Closing Submission suggested a system based on the Human Rights Commission and drafted, in some detail, a ‘proposal for a Patients’ Rights and Medical Research Procedures Act’.77
The framing of patients’ rights as human rights grew logically from the feminists’ analysis in the First Submission and from their experience of the Human Rights Act in promoting women’s rights. The mechanism of the Human Rights Commission had advantages for disempowered patients; it was free to users and the onus for the investigation of complaints fell upon the Commission. For the injured patient, this seemed preferable to legal action facing, unassisted, the entrenched power of professional bodies and their insurers. The proposed system provided extensive capability for the Commission to investigate complaints and seek redress, including compensation. The Submission argued that enforcement powers should include breaches being ‘punishable by a substantial fine’, not precluding ‘high court damages for breaches’ as a back-up. Furthermore, by providing a one-stop-shop for complaints, the Human Rights Commission would simplify the system for the complainant and simplify the bewildering parallel systems, each with different obstacles to overcome.
The Closing Submission called for extensive community consultation and representation of consumers in developing and implementing the new act.78 In particular, it stressed that,
… given the failure of the medical profession to consult with interested parties and indeed the general public in key areas such as professional discipline … [the Inquiry] should make a separate clear recommendation concerning … a consultation process over details for reform in all areas … [including] … the Ministry of Women’s Affairs, women’s health community groups and other consumer organisations.79
The Closing Submission ended with an appendix containing draft legislation for a Patient’s Bill of Rights and for reform of medical research procedures, including ethics committees with investigative powers and representation of women and minority racial groups.80
The proposals put forward in the Closing Submission became the blueprint for reform. Legislation was eventually enacted as the Health and Disability Commissioner Act 1994, becoming operative in 1996. It adopted the model of the Human Rights Commission but established a separate Health Commission charged with the development and enforcement of a Code of Health and Disability Consumers Rights. Prosecutions for breaches of the Code would be heard before the Human Rights Review Tribunal.81 The Third Submission is obscured by recent academic controversy: a discussion of the New Zealand Code of Patients’ Rights ignores the feminist argument and suggested that it originated in Judge Cartwright’s personal experience.82
Were the feminists wrong?
In 2008, the original medical facts of the ‘Unfortunate Experiment’ were reconfirmed in an article in The Lancet Oncology, which re-examined cases of CIS in National Women’s Hospital from 1955-1976.83 The study confirmed that women whose lesions were not eradicated faced higher risks compared to those whose lesions were removed and followed up to ensure elimination. Thirty years after diagnosis, in women who initially had their lesions fully removed, disease progression was negligible (0.7 per cent); while those who only experienced diagnostic procedures had a disease progression rate of 31.3 per cent. Of these latter women, the rate of invasion of cancer cells, in those who also had evidence of continuing abnormalities two years after diagnosis, was 50.3 per cent. Delays in treatment of curative intent were confirmed to be dangerous.
Despite this confirmation, after publication of the 2008 article, challenges to the Inquiry findings were reinvigorated. Linda Bryder reopened the case in her 2009 book, A history of the ‘Unfortunate Experiment’ at National Women’s Hospital which questions the reality of the ‘experiment’ and the findings of the Cartwright Inquiry.84 Bryder argued that the women received standard care and experienced few adverse effects. She concluded that Cartwright merely reinforced reforms in medical ethics and patients’ rights which were already underway internationally.
Bryder’s thesis was not based on the clinical case histories which formed the foundation of the Inquiry’s findings and which remain the crucial primary sources. Two case histories were, however, published in full the Cartwright Report. 85 Bryder analysed one of the cases, for her book, that of Clare Matheson, but importantly failed to understand its full medical implications. She reports that Clare was discharged after successive ‘clear’ smears but does not acknowledge the Inquiry evidence that this occurred because her cervix was so scarred that it could no longer yield appropriate epithelial cells for a smear. More seriously, Bryder ignores the histology report which included ‘fragments of carcinoma devoid of underlying stroma’, which established beyond doubt that she was known to have CIS at the point at which she was discharged from hospital follow-up and the research project.86
In 2010, McCredie, Paul and Jones entered the dispute, claiming that analysis of case notes, coupled with an independent review of the original slides and smears, showed that Green was not, as he claimed, saving women from invasive surgery.87 The women who initially had diagnostic biopsies actually experienced far more surgical procedures than those whose lesions were initially fully removed. The paper showed that, ‘women initially managed by punch or wedge biopsies alone had a cancer risk ten times higher than women initially treated with curative intent’.88 It might have been expected that the publication of this medical evidence would have shown that Bryder’s thesis was incorrect. However, controversy continues, most recently in the publications of the British Royal Society, prompting serious criticism of the feminists involved.89
Bryder criticised the feminist initiators of the Inquiry, particularly Coney, who, she argued, had co-opted the judge and the machinery of the Inquiry to advance the feminist cause. Bryder implies that feminist involvement discredits both the process and findings of the Inquiry and its associated reforms. The Inquiry’s significance did not, however, lie only in the treatment of a disease. Its lasting influence is over the relationship of patients to the medical system. Professor Sir David Skegg has written, ‘The most important legacy of the Inquiry related not to medical research but to the whole delivery of health care’.90 The unique contribution of feminism to the Inquiry was to establish patient interests as the centre of concern; patients’ experience became the yardstick for the effectiveness of the health service. This was a profound change in perspective. Crucially, feminists also established a blueprint which prevented the medical profession from acting as judge and jury in adjudicating patients’ complaints.
Without feminist input the Inquiry could have become a legalistic exercise pitting teams of doctors and lawyers in hair-splitting combat but ultimately leaving the autonomy of the profession intact.91 The Cartwright Inquiry contrasts with similar inquiries in Britain such as the Bristol Inquiry, where there was no sustained organised consumer presence and which had little impact on the structure or process of patients’ rights.92 The complaints procedures in Britain were overhauled in 1993 when legislation created the post of Health Commissioner for England.93 Without legally enforceable rights for patients, though, this initiative remains an adjunct of self-regulation by the English profession rather than a means of patient empowerment as it did in New Zealand. The crucial difference between England and New Zealand lies in the concerted and consistent input of feminists in the latter.
The Cartwright legacy: were feminist arguments irrelevant?
Some medical critics have argued that feminists made little contribution to the Cartwright legacy because their hostility to doctors’ authority impeded the momentum of health reform already in train at the time of the Cartwright Inquiry, or that they uncomprehendingly pursued the recommendations of the Report as ‘holy writ’.94 In truth, examination of feminist submissions shows that their primary concern was to turn public outrage into effective, comprehensive reform of the health system rather than seeking retribution from individual persons or named institutions. The Cartwright Report reinvigorated the WHM. Many organisations and individuals campaigned publicly and lobbied Government for implementation of the proposals set out in the submissions and outlined in the Cartwright Report. Implementation was long and sometimes tedious, albeit eventually, largely successful because many aspects of the reforms concerning patients’ rights and ethics were adopted.
There were, however, two significant differences in the final Report from feminists’ original proposal. Firstly, the WHM lobbied for the Office of the Health Commissioner to be the single entry point to the medical complaints system. The intention was that a unified route would provide comprehensive monitoring of the performance of individuals, institutions and the health system as a whole. Advocates did not foresee that the single gateway could also become an entry barrier controlled by a single gatekeeper. Although there were genuine benefits for patients when the Commissioner took on the burden of acting for the patient, it also meant that patients could not act independently for themselves. Furthermore, patients were given no independent right of appeal.
Secondly, feminists argued that the autonomy of the profession was a critical problem. Their proposal intended to limit professional self-regulation and to create a separate arena for the judgement of complaints, independent of medical control. However, organisations representing professional interests strenuously, and often successfully, opposed the loss of self-regulation and the erosion of medical autonomy.
Professional resistance to reform
Unsurprisingly the proposals were highly political.95 The medical profession, especially the New Zealand Medical Association, lobbied the National (conservative) Government against the Bill.96 In 1993, Health Minister Birch proposed changes to the Bill, which would meet the minimal requirements of the Cartwright Report but omitted key features of the feminist blueprint.97 By this time, there was a serious media backlash against Cartwright.98 Nevertheless, in the face of an impending election, strong support from nurses’ organisations, the YWCA, WHM and effective co-operation by Labour MPs, the conservative Government dropped its proposal.99 Had this lobbying been unsuccessful, the system of dealing with patient complaints in New Zealand would now be similar to that which persists in England, where the law provides only weak protection of patients’ rights.
Nevertheless, the well-funded professional fight back against the loss of autonomy succeeded in limiting reform. Retaining influential Wellington lobbyists, the medical profession and Ministry of Health developed a second Bill without any pub c consultation. Before the Health and Disability Commissioner Act 1994 became operative in 1996, the Medical Practitioners Act 1995 became law, catching the WHM unprepared.100 It established another parallel tribunal, the Medical Practitioners Disciplinary Tribunal, with a majority of members drawn from the medical professionals and a judicial chair. The stated intention was merely to judge fitness to practice and registration. This Act however, also provided for Complaints Assessment Committees (CACs), a majority of whose members were doctors chosen by the Medical Council. Although intended to play a minor role weeding out vexatious complaints, these committees developed into a parallel system as effective gatekeepers for and de-facto judges of complaints.
The CACs ran in parallel to the Commissioner and re-investigated and re-heard evidence and came to conclusions about doctors’ performance sometimes at odds with the Commissioner or the ACC. For example, the ACC had found that, in Northland, six female patients of one doctor had sustained ‘medical error’, equivalent to negligence in other jurisdictions, but only one of these cases (in which the patient died) led to partial deregistration of the doctor.101
Elevating the role of the CACs had the effect of reasserting professional control. The 1995 Act provided nothing ‘to stop the professionals running the complainant out of energy and money through endless delays. One Northland women was stuck in a CAC for five years before she finally got a hearing before the Tribunal, which she won’.102 The line between professional selfregulation and self-protection seemed indistinct; but, in extending the power of these in-house Committees, the profession overplayed its hand and eventually prompted further legislation limiting their jurisdiction. Thanks to the determination of the Northland women, the most obvious injustices of this system were partially ameliorated by the Health Practitioners Competence Assurance Act 2003. While the new Act retained the complexity of the three parallel systems (ACC, professional discipline and Health and Disability Commissioner), it required prompt referral of all complaints to the Commissioner, enabling charges to be laid directly before the Professional Disciplinary Tribunal.
The problem of patients obtaining adequate compensation for medical injuries remained unresolved. This lack of compensation, which the feminist initiators had tried consistently to address, was further compounded as successive Health Commissioners resiled from using their full powers, preferring to pursue a policy they called ‘Learning not Lynching’, rather than seek substantial penalties or compensation for breaches of the Code of Patients’ Rights.
The original feminist reform plan was far from irrelevant. No other group put forward concrete and comprehensive suggestions for change. While previously there had been only two routes through which patients could hold professionals to account, there is now a third way, which is dedicated to patients’ rights. As envisaged by feminists, the jurisdiction of the Code covers all health proessionals, while the Commissioner has extensive powers to investigate individual practitioners, management incompetence and systemic failure. This is of increasing importance as health service restructuring, inspired by neo-liberal political economy, increases the scope of managerial decision making in medicine.
The development of the Code and appointment of the Health and Disability Commissioner were powerful steps towards achieving patient-centred health delivery. The Code established in law the right to be treated with dignity and respect, and implants the principle of informed consent across all aspects of the health system including teaching, research and treatment. Observation of the Code and patients’ rights are supported by independent advocates contracted by the office of the Commissioner from private providers in all regions.
The ethical evaluation of research is separate from, but parallel to the system of patient rights. A network of regional Research Ethics Committees was established, each with a ‘lay’ chair. Half of the committee members must be people who are not health professionals but who, while not accountable representatives of community organisations, do have a clear patient protection focus.103
The most fundamental result of the WHM, in general, and the feminist contribution to the Cartwright Report, in particular, has been the widespread acceptance of the principle that all medical interventions must be judged through the prism of patient experience.104
In England, the Health Services Commissioners Act 1993 established a Health Services Commissioner, to handle patient complaints, with wide investigative powers and an ability to negotiate financial settlements with health providers. However, with neither a legislated Code of Patients’ Rights nor a legal enforcement mechanism, remedial action is largely limited to persuasion. In most jurisdictions, including Great Britain, the enforcement of patients’ rights still relies on professional disciplinary bodies, or in the case of severe physical injury, court action. Without adjudication external to the profession it can be used to reinforce professional solidarity rather than protect patients’ rights.
The relative success of the New Zealand system, which is accountable to patients and external to the medical profession, raises the question of why these innovations have not been enacted elsewhere. In England for example, inquiries into gynaecology at Ashford, breast screening in Exeter, cervical screening in Canterbury, deaths associated with Dr Shipley in Yorkshire, excess deaths in midStaffordshire, the treatment of children at Bristol Children’s Hospital or more recently, cases of deficient or unnecessary breast surgery, have resulted in the censure of individuals and institutions, but did not lead to independent arbitration of patient complaints.105 Although health re-structuring in England embraces patient empowerment rhetoric, the independent Ombudsman’s powers are not backed by enforcement processes through which this empowerment could be realised; and the Patient Advice and Liaison Service (PALS) accords less priority to upholding patients’ rights than to customer relations.
In 1987, in New Zealand, there were two momentous events. The hearings of the Cartwright Inquiry got underway with great fanfare while the State Services Act was passed almost unremarked. Cartwright brought a new patient-centred approach to the design and management of health systems and to medical ethics. The State Services Act introduced New Public Management (NPM) to the developed world. Over the intervening twenty-five years, consideration of patients has been increasingly eroded by the precepts of NPM and the demand for rationing, except perhaps in the minds of patients and constituents. Internationally, the new managerialism, not the Cartwright Report, exercises increasing influence over the development of medical ethics and clinical practice.106
1. Sandra Morgen, Into Our Own Hands: the Women’s Health Movement in the United States, 1969-1990 (New Brunswick; London, Rutgers University Press, 2002); Sandra Coney, Standing in the Sunshine: a History of New Zealand Women since They Won the Vote (Auckland, Viking, 1993); Sandra Coney, ‘Health Organisations’, in Women Together: a History of Women’s Organisations in New Zealand/Nga Ropu Wahine O Te Mot, ed. Ann Else (Wellington, Daphne Brassell Associates, 1993); Australian Women’s Health Network, [htpp://www.awhn.org.au]; Women’s Health Victoria, [www.whv.org.au].
2. Carol Weisman, Women’s Health Care: Activist Traditions and Institutional Change (Baltimore; London, Johns Hopkins University Press, 1998), 29.
3. The main challenge to the feminists came from Linda Bryder in her book, A History of the ‘Unfortunate Experiment’ at National Women’s Hospital (Auckland, Auckland University Press, 2009).This was published in the UK under the title, Women’s Bodies and Medical Science: an Inquiry into Cervical Cancer (London, Palgrave Macmillan, 2010).
4. The submissions to the Cartwright Inquiry used in this article are in form of a collection of manuscripts held in a private collection, thus the pagination used in references differs from the official transcripts of the Inquiry which are publicly available at National Archives, Auckland, and the Archives Room, Victoria University of Wellington, New Zealand. The Bunkle and Coney Metro article and the Cartwright Report can be accessed at the website of Women’s Health Action, at [www.womens-health.org.nz/ cartwright.html], along with many other original documents used the preparation of this article. Sylvia Cartwright, The Report of the Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital (Auckland, Government Printing Office, 1988), hereafter, Cartwright Report.
5. Phillida Bunkle and Sandra Coney, ‘An Unfortunate Experiment at National Women’s Hospital’, Metro, (June 1987), 47-65. [www.womens-health.org.nz/cartwright.html, accessed 8 January 2013].
6. Sandra Coney and Ann Parson, The United Women’s Convention (Auckland, United Women’s Convention Book Committee, 1973).
7. Wendy Harrex, Broadsheet: Twenty Years of Broadsheet Magazine (Auckland, New Women’s Press, 1992); Phillida Bunkle, Second Opinion: The Politics of Women’s Health in New Zealand (Auckland, Oxford University Press, 1988).
8. Coney, ‘Health Organisations; www. womenshealthcouncil.org.nz, accessed 12 December 2012; Morgen, Into Our Own Hands, 235; www.awhn. org.au; www.whv.org.au, accessed 12 December 2012. Such movements were less numerous in Britain, where feminist activity appears to have been centred largely on maternity services.
9. Nancy Tuana, ‘The Speculum of Ignorance: the Women’s Health Movement and Epistemologies of Ignorance,’ Hypatia 21/3, (2006), 1-19..
10. Linda Gordon, ‘The Politics of Birth Control, 1920- 1940: The Impact of Professionals’, International Journal of Health Services, 5/2 (1975), 253-78.
11. Phillida Bunkle, ‘Women, Health and Politics: Divisions and Connections’, in Feminist Thought in Aotearoa New Zealand: Connections and Differences, ed. Rosemary du Plessis and Alice Lynne (Auckland, Oxford University Press, 1998); Phillida Bunkle, ‘Becoming Knowers: Feminism, Science and Medicine’, in Feminist Voices, A Women’s Studies Text for Aotearoa/New Zealand, ed. Rosemary Du Plessey et al. (Auckland, Oxford University Press, 1992), 59-73.
12. Susan Sherwin, ‘A Relational Approach to Autonomy and Health Care’, in The Politics of Women’s Health: Exploring Agency and Autonomy, ed. Susan Sherwin (Philadelphia, Temple University Press, 1998), 19-47.
13. Bryder, A History of the ‘Unfortunate Experiment’.
14. The HealthRight Collective, ‘The Women’s Health Movement: Where Are We Now?’, in Seizing Our Bodies: The Politics of Women’s Health, ed. Claudia Dreifus (New York, Vintage Books, 1977), 271-8; Helen Marieskind ‘The Women’s Health Movement’, International Journal of Health Services, 5/2 (1975), 217-23.
15. Sheryl Ruzek, The Women’s Health Movement: Feminist Alternatives to Medical Control (New York, Praeger Publishers, 1978).
16. Morgen, Into Our Own Hands, 235
17. Linda Hancock, ‘How Will Women’s Health Fare in the Latest Round of Market State Reforms?’, Health Issues, 55 (June 1998), 26-9.
18. Sandra Coney, Into the Fire: Writings on Women, Politics and New Zealand in the Era of the New Right (Auckland, Tandem Press, 1997); Phillida Bunkle and Jo Lynch, ‘What’s Wrong with the New Right?’, in Superwoman Where Are You? Social Policy and Women’s Experience, ed. Celia Briar, Robyn Munford and Mary Nash (Palmerston North, Dunmore Press, 1992), 67-40; Phillida Bunkle, ‘Structural Reform, Economism, and the Abuse of Scientific Authority’, Women’s Studies Journal, 11/1-2 (August 1995), 141-59.
19. Felicity Lawrence, ‘No Gain From Pain: Private Care Firms Walk Away From Loss-Making GP Surgeries’, The Guardian, 20 December 2012, 15; [www.guardian.co.uk/ datablog].
20. Te Ara [www.teara.govt.nz/en/health-advocacyand-self-help/2, accessed 12 December 2012].
21. Sheryl Ruzek and Julie Becker, ‘The Women’s Health Movement in the United States: From GrassRoots Activism to Professional Agendas’, Journal of the American Medical Women’s Association (JAMWA), 54/1 (1999), 4-8, 40.
22. Phillida Bunkle, ‘The New Right and the Marginalisation Of Women’, Social Work Review, 4/2-3 (1991), 4-13; Phillida Bunkle, ‘How Can We Change the System?’, The Fourth International Congress of Women’s Health Issues: New Zealand Papers (Palmerston North, Massey University, 1991), 11-14.
23. Carol Weisman, Women’s Health Care: Activist Traditions and Institutional Change (Baltimore; London, Johns Hopkins University Press, 1998), 29.
24. James Le Fanu, The Rise and Fall of Modern Medicine (London, Abacus, 1999), 196-205.
25. Neville Butler and Dennis Bonham, First Report of the British Perinatal Mortality Survey (Edinburgh, 1963).
26. Dennis Bonham, ‘Perinatal Mortality’, Australia and New Zealand Journal of Obstetrics and Gynaecology, 5/3 (August 1965), 183-5.
27. Phillida Bunkle, Sandra Coney, and Forbes Williams, First Submission to the Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital and into Other Related Matters (1987), hereafter First Submission; Bunkle, Second Opinion.
28. First Submission, 18.
29. Carol Hanisch, ‘The Personal is Political’, in Notes from the Second Year: Women’s Liberation, ed. Shulamith Firestone and Anne Koedt (New York, Shulamith Firestone and Anne Koedt,1970); Helen Marieskind, ‘Gynaecological Services: Their Historical Relationship to the Women’s Movement with Recent Experience of Self-Help Clinics and Other Delivery Modes’ (Unpublished PhD thesis, University of California, Los Angles, 1976), 140-8.
30. Margret Lock, ‘Situating Women in the Politics of Health’, in The Politics of Women’s Health: Exploring Agency and Autonomy, ed. Susan Sherwin (Philadelphia, Temple University Press, 1998), 48-63.
31. Kathryn Pauly Morgan, ‘Contested Bodies, Contested Knowledges: Women, Health and the Politics of Medicalization’, in Sherwin, ed., Politics of Women’s Health, 83-121.
32. Bunkle and Coney, ‘An Unfortunate Experiment’.
33. William McIndoe, Malcolm McLean, Ron Jones and Peter Mullins, ‘The Invasive Potential of Carcinoma In Situ of the Cervix’, Obstetrics and Gynaecology: Journal of the American College of Obstetricians and Gynaecologists, 64 (1984), 451-8.
34. Clare Matheson, Fate Cries Enough: A Survivor of the Cervical Cancer Experiment at National Women’s Hospital (Auckland, Sceptre, 1989).
35. Rodney Ledward was a British gynaecologist who was struck off the medical register for serious professional misconduct in 1998. Nearly 200 complaints had been made against him, including, in one case, the removal of a woman’s ovaries without her consent. Jean Ritchie, An Inquiry into Quality and Practice within The National Health Service Arising From the Actions of Rodney Ledward (London, The Stationary Office, 1 June 2000).
36. Cartwright Report.
37. Cartwright Report, 176; Ron Paterson, ‘The Cartwright Legacy: Shifting the Focus of Attention from the Doctor to the Patients’, The New Zealand Medical Journal. 123/ 1319 (July 2010), 6-10.
38. First Submission.
40. Ibid., section 9,1.
41. Hanisch , ‘The Personal is Political’; Susan J. Carroll, ‘The Personal is Political’, Women & Politics, 9/2 (1989); Carol Dreyfus, Seizing Our Bodies (New York, Vintage Books, 1977).
42. First Submission, section 5, 14.
43. First Submission, 15.
44. Ibid., 16.
45. Ibid., section 5, 15.
46. Ibid., 17.
47. Ibid., 18.
48. Ibid., 19.
49. Ibid., 20.
50. Ibid., section 6, 4.
51. Ibid., 5.
52. Ibid. GP visits are expensive in New Zealand, but the research subjects were given no financial assistance.
53. Ibid., 6.
54. Ibid., 1-25.
56. Ibid., 24.
57. Phillida Bunkle, Sandra Coney and Forbes Williams, Submission from Fertility Action to the Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital (1987), hereafter Second Submission.
58. Ibid., 2-9.
59. Ibid., 10-11.
61. Ibid,. 11-12.
62. Ibid., 2.
63. Carolyn Faulder, Whose Body Is It? The Troubling Issue of Informed Consent (London, Virago Press, 1985); Second Submission, 17.
64. Second Submission, 17.
66. Ibid., 23.
67. Ibid., 29, 41 ,43, 50.
68. Ibid., 56, 61.
69. Ibid., 58.
70. Matheson, Fate Cries Enough.
71. Second Submission, 62.
72. Rodney Harrison, Closing Submissions of Counsel for Sandra Coney And Phillida Bunkle, Fertility Action and ‘Ruth’ to Committee of Inquiry into Treatment of Cervical Cancer at National Women’s Hospital and Related Matters (1987), hereafter cited as Closing Submission.
73. Ibid., 29
75. Peter Davis, Submission to the Cartwright Inquiry; Glenfield Women’s Community Health Co-operative, Submission to the Cartwright Inquiry.
76. Ministry of Women’s Affairs, Submission to the Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital and into Other Related Matters. Part 1 (Prepared by the policy unit of the Ministry of Women’s Affairs, August 1987).
77. Closing Submission, ‘Proposed Patients’ Rights and Medical Research Procedures Legislation’, 36-40.
78. Ibid., 26.
79. Ibid., 20.
80. Ibid., 39.
82. Joanna Manning and Ron Paterson, ‘New Zealand’s Code of Patients’ Rights’, in The Cartwright Papers: Essays on the Cervical Cancer Inquiry 1987-88, ed. Joanna Manning (Wellington, Bridget Williams Books, 2009), 150.
83. Margret McCredie, Charlotte Paul and Keith Sharples, ‘The Natural History Of Cervical Neoplasia and Risk of Invasive Cancer in Women with Cervical Intraepithelial Neoplasia 3: A Retrospective Cohort Study’, Lancet Oncology, 9 (May 2008), 425-34.
84. Bryder, A History of the ‘Unfortunate Experiment’.
85. Cartwright Report, 267-85.
86. Ibid., 283.
87. Margret McCredie, Charlotte Paul, et al., ‘Consequences in Women of Participating in a Study of the Natural History of Cervical Intraepithelial Neoplasia 3’, Australian and New Zealand Journal of Obstetrics and Gynaecology, (2000), 1-8.
89. Ron Jones, ‘Why Did So Many Women Develop Cancer?’, New Zealand Medical Journal, 123/13 (2009), 89-90; and ‘Why Did So Many Women Get Cancer?’, New Zealand Doctor, 2 December (2009); Robin Carrell, ‘Trial by Media’, Notes & Records of the Royal Society, 66/3 (2012), 301-6.
90. David Skegg, ‘Forward: the Cartwright Inquiry and its Legacy’, in Manning, ed., The Cartwright Papers, 8.
91. Sandra Coney, ‘An Unfortunate History’, in Manning, ed., The Cartwright Papers, 146-7.
92. Learning from Bristol: The Report of the Public Inquiry into Children’s Heart Surgery at the Bristol Royal Infirmary, 1984-1995, presented to Parliament by the Secretary of State for Health by Command of Her Majesty, July 2001, CM 5207 (London, Department of Health, 2002). [www. dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4002859, accessed 8 January 2012].
93. Parliamentary and Health Services Ombudsman, Moving Forward: Annual Report 2011-12 (London, The Stationary Office, July 2012). [www.ombudsman.org. uk/about-us/publications/annual-reports]. Health is a devolved power in the UK. This legislation concerned England only; arrangements in Wales, Scotland and Northern Ireland are different.
94. Charlotte Paul, ‘Education and Debate: Internal and External Morality of Medicine: Lessons from New Zealand’, British Medical Journal, 320/7233 (19 February 2000), 499-503; Charlotte Paul, ‘Medicine in Context’ (118); and ‘Cervical Cancer Study’ (89-98), in Manning, ed.,The Cartwright Papers; Bryder, A History of the ‘Unfortunate Experiment’, 190; Skegg, ‘Forward: the Cartwright Inquiry’, 9.
95. Phillida Bunkle, ‘Side-stepping Cartwright’, in Unfinished Business: What Happened to the Cartwright Report?, ed. Sandra Coney (Women’s Health Action, Auckland, 1993), 169-86
96. Sandra Coney, ‘The Role of the Health Commissioner’, paper to the National Medico-Legal Conference, Wellington, August 1992, [www.womens-health.org.nz/ complaints.commissioner.htm].
97. Women’s Health Action, ‘Health Commissioner Bill, June 1994’, [www.womens-health.org.nz/complaints. commissioner.htm].
98. Jan Corbett, ‘Have You Been Burned at the Stake Yet?’, Metro, (October 1990), 156-65; Jan Corbett, ‘Second Thoughts on the “Unfortunate Experiment” at National Women’s’, Metro, (July 1990), 54-73 and (November 1990), 134-8; Erich Geiringer, ‘Trial in Error’, New Zealand Listener, (November 1988), 18-19, 44-46.
99. Women’s Health Action [ www.womens-health.org.nz/ complaints/commissioner.htm]
100. John Adams, Chair New Zealand Medical Association, ‘Address to Conference on The Health Practitioners Competence Assurance Bill’, Wellington, September 2008.
101. Medical Practitioners Disciplinary Tribunal, decision no: 187/01/80C, Wellington; Medical Practitioners Disciplinary Tribunal, Precis 00/62D, [www.mpdt.org.nz/ decisionsorder/precis/0062d.asp].
102. Phillida Bunkle, ‘Back to the Bad Old Days, the Health Practitioners Competence Assurance Bill’, Women’s Health Watch, (September 2002) [www. womens-health.org.nz/back-to-the-bad-old-days-of-themedical-protection-racket.html]; Phillida Bunkle, ‘The New Health Professionals’ Competency Assurance Bill’, Legal transcript, Keynote Speech to 10th Annual Medico-Legal Forum, Wellington,18 February 2002.
103. Sandra Coney, Effective Consumer Voice and Participation for New Zealand (Wellington, New Zealand Guidelines Group, 2004); Phillida Bunkle, ‘The Representation of Consumer Interests in Medical Research’, in Women and Health Research, ed. Nicola Gavey (Auckland, Medical Research Council, 1989).
104. Ruth Laugesen, ‘Medicine’s Awful Errors’, The New Zealand Listener, (6 March 2010); Peter Davis, Adverse Events in New Zealand Public Hospitals: Principle Findings from a National Survey (Wellington, Ministry of Health, Occasional Paper #3, 2001).
105. Learning from Bristol; Safeguarding Patients: The Government’s Response to the Recommendations of the Shipman Inquiry’s Fifth Report and to the Recommendation of the Ayling, Neale and Kerr/ Haslam Inquiries, presented to Parliament by the Secretary of State for Health, February 2007 (London, The Stationary Office, 2007), [www.bmj.com/content/330/7505/1449.1 accessed 8 January 2013].
106. Ron Paterson, ‘Rationing Health Care and Human Rights: The Northland Case’, New Zealand Law Review, 571 (1998), 504; Colin Feck, et al. ‘Experience with Rationing Health Care in New Zealand’. British Medical Journal, 348 (15 May 1999).