A History of the ‘Unfortunate Experiment' at National Women’s Hospital
One patient’s perspective
In The Weekend Herald (19 September, 2009) Professor Barbara Brookes, head of the Department of History and Art History at Otago University is quoted as saying: ‘Historians have a professional duty to produce balanced and fair accounts.’
As one who studied history in the seventies under Professor Tarling at the University of Auckland, I am concerned that a publication such as Bryder’s has emanated from that institution and that the Auckland University Press has chosen to publish it. Bryder’s account is neither fair nor balanced. The text is peppered with inaccuracies, quotes out of context and seemingly deliberate omissions apparently aimed at down playing the seriousness of what happened to the women involved in Associate Professor Green’s programme at National Women’s Hospital. Her lack of attention to detail in many areas of her ‘history’ conveys to the reader in many instances, what can only be described at worst as untruths, or at best, fudging of the real issues.
I have been given a copy of her book. Far more qualified people than I have put forth and are putting forth expert analysis of its content, much of which has been found wanting in terms of accuracy as to medical matters. I therefore present a summary only of those things in the book which relate to me and to my case.
The history of my case was placed in the public domain, first, when my clinical notes were used in the Metro article of 1987, secondly when the Cartwright Report was published and thirdly when my book Fate Cries Enough was published in 1989. My book was written in language anyone could understand and contains verbatim, my clinical notes from National Women’s. I am nonplussed at the confused interpretation Bryder makes of the content of my book. Some of the errors are not of great magnitude in themselves but all together they present an example of faulty research. Some of the statements made can only be described at best as ambiguous. And if the simple and straightforward facts cannot be represented accurately when the resource is readily available, how much faith can anyone have in her ‘analysis’ of the far more complicated technical and medical matters raised during the course of the Cartwright Inquiry?
On P193 Bryder discusses the notion that many of the women attending the National Women’s clinic were of low socio-economic status and that this, according to the author of an article in the Australian feminist journal, Hecate, ‘…was a factor in the “disregard shown by doctors for the welfare of the women”.’ I have no wish to debate such a notion here but I am amazed that Bryder says of me that ‘…she herself was a secondary school teacher and deputy school principal’ giving the impression that that was my status during the time I was attending the National Women’s Hospital as a patient being seen in the main by Associate Professor Green. Bryder claims to have read my book. If this is the case how does she overlook the facts that when I first went to National Women’s in 1964 I was neither a secondary school teacher nor a deputy principal? I became a secondary school teacher in 1976. Three years later, in 1979, I was discharged from National Women’s and did not become a deputy principal until 1985, the year in which I was diagnosed with invasive cancer. These facts are in my book which she refers to a number of times. Bryder’s references could make those unfamiliar with my book believe that she has read it. I am still deciding which is worse; pretending to have read it, or actually reading it and misrepresenting the content.
On P 64 Bryder makes much of the number of negative smears a woman needs to have before being discharged and states that Associate Professor Green ‘adopted a more cautious approach than Richart’ in that he did not consider three negative smears sufficient prior to discharge. In my case there were five but, as a result of the number of times pieces of the cervix had been removed, smear tests became unreliable because the numerous biopsies had produced a condition known as stenosis. The last histology report within this time period showed the presence of ‘carcinoma devoid of underlying stroma, probably carcinoma un situ’. Bryder classes this report as ‘equivocal.’ There was nothing equivocal about the report. Carcinoma of some sort was still present. If the report was equivocal at all it was that microinvasion or invasive cancer could not be ruled out because there was no way of telling if the carcinoma had advanced as there was no underlying stroma present in the curettings. I had had five consecutive negative smears (owing to this condition of stenosis, something I am sure Richart would never have allowed to happen) but Green also made the statement at the inquiry that ‘… as Matheson was fed up with attending the hospital on a regular basis it seemed reasonable at the time to discharge her into the care of her general practitioner.’ (P 64) Perhaps at this time it was Green who was getting fed up. My implication that I was getting fed up was made four years prior to my discharge. I have been criticised for the use of the term ‘guinea pig’. It is a shame that I did not have the knowledge then that would have enabled me to use the term ‘a subject of human experimentation’, but I doubt if that would have gone down very well either! Over the years, from1964 to 1976 my smear results had ranged from Grade 2 to Grade 5, Grade 5 at that time meaning ‘Conclusive for malignancy.’ I had had seven of the latter.
In 1976 I started returning Grade 1 smears. In April of 1977 Green performed a dilatation and curettage in order to combat the stenosis which had occurred as a result of scar tissue forming as a result of multiple biopsies. It was the pathology report from this curettage which showed fragments of ‘carcinoma devoid of underlying stroma”. Green comments in his notes that ‘The histology report is somewhat surprising’ but chooses to ignore it. In September of the same year Green comments in my clinical notes that ‘The cervix is still somewhat stenosed.’ As a result the smear test was ‘normal’. In September 1979 the smear result was negative again but Green writes, ‘Findings as before ie atrophic cervix.’ He appears to have decided to summarily discharge me as when I went to the desk to make the next appointment I was told by his secretary that this was the case. I get the feeling that I was thrown into the ‘too hard basket’ or that I had an ongoing condition that was just not fitting into his theories, and was proving that those theories were at best, suspect. Or perhaps because of his nearing old age his thinking was becoming even more confused.
I discovered years later that on my discharge he had written to my general practitioner stating that I had no more chance than the next woman of developing cancer.
On P65 Bryder makes the statement that ‘Matheson went on to have four children’ after first attending National Women’s, as though Green’s treatment or lack of it had enabled this to come about. When being queried on this by Chris Barton of the New Zealand Herald she apologised for the error and also to Jan Corbett as she said she had gleaned this information from a letter by Jan Corbett (Sunday Star, 5 August 1990.) I have a copy of Jan Corbett’s letter. She did not make this statement at all. She did say that I had a child in 1965 but this is also incorrect as my last child was born in 1966. My first two children were born prior to my attending National Women’s. This is all in my book. I had had four pregnancies one of which had resulted in a miscarriage.
When I read what Bryder has written I am reminded of a lawyer saying some years ago of a witness, that the witness ‘….remembers things not as they were but as he would like them to be!’ This is always a danger also when a writer has a specific mindset or tunnel vision, especially when the writer is a historian.
On P 64 of her book Bryder writes that, ‘In her book, Matheson wrote that she should have had a cone biopsy in 1964 which would have saved all the subsequent visits to the hospital.’
I did not say ‘cone biopsy’. I did not say ‘should have.’ I did not say ‘would have.’
Bryder has not only got the words wrong, she has taken the excerpt right of out context. Subsequent visits to the hospital was not what I was writing about at that point. Green, in 1985 had written a letter to the New Zealand Medical Journal making the claim that ‘…all the expensive effort of cytologists, colposcopists, clinicians and clerical staff have not made the slightest difference to overall mortality rates for cervical cancer.’ I had found his concern about finances ironic. What I said in my book was, ‘Had I had in 1964, the appropriate treatment, that is a definitive biopsy, the taxpayer’s pocket might have been spared the expense of over forty visits to National Women’s , including seven anaesthetics, numerous biopsies, colposcopies, smear tests, caesium treatment and major surgery. And that little bill can be multiplied by the great number of other women who were part of Green’s programme. I should imagine that the expense of years of useless ‘treatment’ experienced by women in Green’s programme would have gone a long way towards setting up a nation-wide screening programme.’
I see Bryder’s statement above as just another example of her manipulation of words in order to make them fit her thesis which is apparently aimed at downplaying the experiences of those women subjected to Green’s programme. At no point in her book do I detect any concern for the women who were part of Green’s experiment. In her concern to proclaim Green innocent of any wrongdoing, the women become invisible and seemingly of little importance, for to Bryder, their ‘treatment’, from which some women suffer still today, was entirely satisfactory.
This use of selective vocabulary in order to play down the uncomfortable truths about the women involved in Green’s programme is exhibited again when Bryder speaks about the basis of Sandra Coney’s and Phillida Bunkle’s article in Metro 1987. (P125-126)
‘The Metro article was about Green’s treatment of women referred to National Women’s Hospital with a positive cervical smear, and was based largely on Bill McIndoe and his colleagues’ 1984 article and Clare Matheson’s story.’
Story? That is a strange if not bizarre term to describe a patient’s clinical notes which were produced by a medical institution. The intention behind this kind of semantic word play is questionable.
Prior to the Cartwright Inquiry, patients of public hospitals were not allowed access to their clinical files. In order for me to obtain mine Gabrielle Collison, the then medical superintendent at the hospital had had to consult with the hospital’s lawyers. Acquiring my medical file was most unusual and provided a factual clinical history which Sandra and Phillida could blend in with their own researched knowledge to produce the Metro article. It was not a ‘story’. It was a medically documented account of the clinical procedures I had been subjected to from 1964 to 1986. This factual account was readily available to Bryder in my book and in Dame Silvia Cartwright’s Report.
Bryder goes on to say on P 193, ‘It is also the case that some of the patients included in the CIS statistics were private patients at the hospital or patients who moved between the two sectors as did Matheson.’
Amazing. The first time I went to a private specialist was at the prompting of my general practitioner in 1985, six years after being discharged from National Women’s! The only reason I returned to National Women’s at all was because it was the only hospital in Auckland offering the treatment I required. On my second visit to Graeme Overton he had told me that I had had a number of Grade 5 smears during the time I had been a patient of Green’s. Any confidence I had had in National Women’s was completely shattered.
On P 161 Bryder writes that Graeme Overton ‘…was the one that finally insisted that Matheson have a hysterectomy and commented that it should have been done years before.’ I am intrigued by the use of the word ‘insisted’. Is she implying that there were some at National Women’s who did not agree with Overton’s medical diagnosis and recommendation?
Bryder also attempts to address the legal outcomes of the case but unfortunately, she does so from a source written in 1993 before they were finalised. In her book she states that, ‘…29 also applied for accident compensation for loss or impairment of bodily function and received sums ranging from $4900 to $1700.’ I will allow this as a misprint as the second sum should be $17000. One reading her book could easily assume that that was the end of it. Although there were many women who could not seek compensation because of the ACC cut off point, there were many further claims, the awards giving an ever so slightly better reflection of what the women had gone through.
One thing I must address here is my saying in my book that ‘I felt like something out of Auschwitz.’ Much has been made of this by Bryder and others. All I can say in reply is that if one has been experimented on without their consent for fourteen years, being subjected to a variety of surgical procedures, and one’s anatomy has been mutilated, and there is no better word, to the point where it is not functioning as it ought, then it seems appropriate to compare that treatment with the most publicly known case of human experimentation. It is how one feels that is the issue. And any statistics resulting in death from Green’s programme are abhorrent. One would be one too many. For Bryder to compare statistics from Auschwitz and National Women’s is child like, but the basic similarity exists. Out of the Nazi regime came the Declaration of Geneva (1948) aimed at safeguarding the rights of patients. It followed the Nuremberg Code of 1947.
There is another matter that needs to be addressed. The photo of Dame Silvia Cartwright, Sandra Coney, Phillida Bunkle and me has been used by many including Bryder, to point to a ‘feminist plot’.
On P 124 Bryder says that at a conference one year after the Cartwright Report was published ‘…the Auckland Women’s Health Council gave Silvia Cartwright a presentation.’ As is common at such functions all speakers were given a presentation, including me. Photos were being taken when the conference ended. Silvia Cartwright did not want to be drawn in and refused to be part of it. It was at my behest that she finally agreed to do so. It is a request that I have regretted ever since. So much hay has been made of what was a simple act of generosity on Dame Silvia’s part.
As I reflect on Bryder’s book and the comments she has made in regard to me and my case, a mischievous thought comes to mind: Did Bryder think perhaps, that I had shrugged off my mortal coil and therefore would have no right of reply?
As I said at the outset, how reliable can a ‘history’ be if the simple and straightforward facts of one person’s experience can be manipulated in such a manner? If this is the new look of history, we don’t need it.