Stress and tears at cancer inquiry marathon

By FRANCESCA MOLD

It began with simmering anger - the kind of impotent fury that comes from being wronged.

It ended with the hope that something will be done to make sure the wrong never happens again.

After a marathon 12 weeks, the Gisborne cervical cancer inquiry has heard its last piece of evidence.

Now, the team of three women heading the investigation must go away and formulate a report setting out why there was mass under-reporting of cervical smears in Gisborne, whether it may affect other parts of the country and what can be done to avoid a similar disaster.

The inquiry has been an agonising process for many of those involved. The women caught up in the health scandal have shared shockingly intimate stories about their battle against cancer in front of teams of lawyers, doctors and journalists, in the hope that others never have to suffer as they have.

Others have been forced to spend months living in motels, away from home, family and other work commitments, to accommodate a decision to hold hearings close to those affected, in Gisborne.

In the end, the isolation of the inquiry hearings brought people together because of the shared difficulties raised by commuting, the loneliness of being away from loved ones and the logistical problems associated with working in Gisborne.

The Herald asked five people who have lived and breathed the inquiry to share their experiences.

VICTORIA ANDERSON

Her involvement with the women she represents has taught her about human strength.

The Gisborne-based lawyer is part of the legal team fighting for those affected by the cervical smear scandal - an experience which has dominated her life since May last year.

Some of her clients have had name suppression, but one client she can mention is Midge Ward, who testified at the inquiry but died of cervical cancer soon after.

Mrs Ward, she says, was positive and working towards change until the end.

"She had the inner strength to be there for other women - that's very special."

Mrs Anderson says the grandmother was not alone in her concern for others. Despite their own illnesses, those affected did not want the same for other women, their children and grandchildren.

The inquiry has been a central theme of her life for months, and she says she is lucky to have had a supportive partner, family and secretary.

"Above all, the focus has been on the women. Certainly a lot of what they have been through - and what they deserve - means you go the extra mile."

BETSY

Betsy (not her real name) has sat through most of the cervical cancer inquiry but is left wondering whether the problems it has unearthed will ever be fixed.

The Gisborne woman, who did not want to be identified, had two misread slides, but found out she had precancerous cells only when almost 23,000 slides were sent to Sydney for re-reading.

"It blew me away," says Betsy, who had to have a hysterectomy.

She is troubled and stressed by what has happened to her, and finds it difficult to talk about it.

Now, she only hopes to get answers from the people charged with investigating the plight of her and other Gisborne women.

ROYDEN HINDLE

He leaves the Gisborne inquiry with the greatest respect for those he has worked with.

The lawyer, who, along with colleague Hanne Janes, had the job of assisting the three-woman panel heading the inquiry, says there has been a tremendous common effort to address the issues raised at the inquiry.

"Everyone has worked so hard. The huge volume of material we have had to work with placed an enormous burden on those involved."

But Mr Hindle is certain everyone at the inquiry has benefited.

"We had the privilege of hearing from expert witnesses and others who have had long experience of screening programmes. I doubt anyone will leave without a better understanding of the programme."

Mr Hindle says that although there were strongly opposing views, everyone took part in a positive way.

"That made it easier for all of us to cope with the demands of the inquiry."

He says everyone was moved by the stories of women affected.

"The responsibility of dealing with issues that ultimately get measured in terms of deaths that could be avoided has been clear throughout. It makes for a strong sense that the inquiry has been a worthwhile thing to contribute to."

But Mr Hindle says the hearings have been difficult because they took many of those involved away from home.

"We were welcomed in Gisborne, but being away from home has been hard on my family. I am grateful to my wife, Jane, for being so supportive."

He is also grateful to his colleague, Hanne Janes, who, he says, has been thoughtful and supportive throughout.

"I would not have been able to cope without her."

BETSY MARSHALL

For Betsy Marshall, senior policy adviser at the Cancer Society, the Gisborne inquiry is the second major investigation into cervical cancer she has been involved with.

"Having been involved in the Cartwright Inquiry, I expected the [Gisborne] inquiry would be an all-consuming experience - and, indeed, it has become a way of life for everyone involved."

She says it was important the inquiry was held in Gisborne, although for out-of-towners it was demanding in terms of time away from families.

"And for those of us representing agencies like the Cancer Society, being in Gisborne has required quite a financial commitment. Nevertheless, I know of no one who would question the importance of us being here."

On a personal level, she feels very privileged to have been involved in the inquiry.

"I've learned so much from those involved, and I have developed a profound respect for the rigorous approach required in answering the questions before the inquiry."

NEIL KIRTON

Mr Kirton, who represented the Women's Health Information Resource Trust, believes the Gisborne inquiry was an ordeal that only women can fully appreciate.

He will never forget the words of women who revealed their most intimate secrets during hours of heart-rending evidence.

"Life's candle for one woman was only just flickering as she softly spoke of her ordeal. Her hushed, uncomplaining tones gave testimony to a life of hardship and struggle dedicated to her family. Within a few weeks, Kathleen Ward was dead."

Mr Kirton remembers evidence from a woman who recited the devastation of a total abdominal clearance.

"Every last vestige of womanhood was removed. Life now revolves around two bags, to be dealt with every few hours."

Another young woman told of the stench of rotten flesh as cancer ravaged her mother's body. "Death was sweet respite for this poor woman."

Mr Kirton says tears were shed at the inquiry - many by women who were either affected, giving expert testimony or representing those who had suffered.

"Embarrassed men shuffled their papers or detached themselves by gazing into some distant place."

Mr Kirton believes there are many causes of the Gisborne disaster. Some are obvious and others obscure, he says.

The 1988 Cartwright report put the medical profession on notice 12 years ago to confront incompetence among doctors head-on and to make the patient to the highest priority, says Mr Kirton.

"Evidence to show that things have changed was hard to find in Gisborne," he said.

Herald Online feature: Gisborne Cancer Inquiry

Official website of the Inquiry