Guest Post – “Unfortunate Experiment”

A guest post by Frances Denz.


I was interested in the programme on the “Unfortunate Experiment” on Sunday last week.  It traversed the issues, particularly in light of the book being launched which has been written by a someone who had been a junior doctor and an unwilling participant in the processes at the time.

A small component of the TV  programme was a strident condemnation of an academic whose research demonstrated that there was some validity in the work that Professors Green and Bonham were doing.  Because so many women were harmed, the whole rationale for the research was treated with contempt.  But like so many things, there is a but!  

I write this as a participant in the whole debacle and who unwittingly became part of the study.  I was first diagnosed as having gynae problems in 1961. Smears were taken and nothing was done.  I was in acute pain, and eventually I had the first of twelve operations, over the next few years.  I was never once told that I had cancer, not even when I was admitted for radiation treatment.  I was ill for a total of 29 years, and in most of that time I had no more than five hours a day out of bed.  Chronic pain over those years was devastating, but eventually I recovered.  And for many years I lived a full and active life.

Because no-one ever mentioned cancer I carried on doing interesting things, within my capacity to do so.  My husband took me camping. I lived in a tent while we built a hut to live in while we built a house.  I just carried on with life – in pain but still doing things.

Would my life have been like that if I had been told I had cancer?

In recent years there is evidence that there was some validity in their premise that just because you had cancer cells on the day of the test does not always mean you will get full blown cancer.  That invasive surgery early on might be over the top treatment.

What he did wrong was not to tell women what he was doing, that they were part of a research study.  And there was little if any follow up after each surgery.  For example, I was never followed up after any of my operations – they just waited for me to re-present with another growth.

The professor was arrogant and offensive to patients.  He nearly had me certified and condemned to Lake Alice because he had made up his mind about a diagnosis without an examination.  And when I rigorously demanded an examination he told me my rudeness and vulgarity demonstrated that I was of unsound mind. I was terrified of him for years.

But I do think we have lost the ability to look at the work he was doing because he was such an obnoxious man.  We do not want to listen to another researcher who questions the wholesale rejection of his work because it does not condemn him, and just might rehabilitate his reputation.  I don’t want him rehabilitated– he was a dreadful power-mad man.  But I do think that it is unfair to stigmatise another researcher who has been prepared to look at the results objectively and strip out the bad practice and the ego from the research.

He got it wrong with many of us, and about 57 women died.  Others, like Clare Matheson and myself, suffered crippling pain and illness for many years.  Many of us could not have children, and marriages broke under the strain – including mine.  But this was out of more than a thousand women and was because of processes.

Research should not be judged on emotion, but facts.  Strip out the arrogance, the lack of observing protocols – which hadn’t been invented then – and the lack of good medical care, and what is left?  Is the concept he was pursuing valid?  That is what should matter now.


Frances Denz MNZM

Frances has been instrumental in helping entrrpeneurs establish more than 4000 businesses since 1986. She is an authority on business start-ups and regional economic development and is a keynote speaker at conferences internationally. Frances is the co-founder of Stellaris Ltd and specialises in the small business and government sectors.
In 2013 Frances was honoured by the Queen with Membership of the Order of New Zealand (MNZM) for services to business.

As a Maori woman of Ngati Tuwharetoa and Tainui descent, Frances has worked with many Maori organisations to establish expertise in self-employment. Frances has special interests in the health and horticulture industries. 
She was  the founding chair of the Womens Loan Fund.

Frances is the author of Hope and Rehabilitation, Able to do Business and Women at the Top. She is passionate about encouraging small businesses to establish good governance and management in order to develop into very successful businesses.

 


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