Cancer questions linger

The Gisborne cervical cancer inquiry report holds some disappointments for the women most affected. FRANCESCA MOLD and MONIQUE DEVEREUX report.

It was a year ago, to the day, that dozens of women first met in a bare Gisborne office block. They had come to find out why they had developed cervical cancer, despite taking every precaution.

For 12 weeks they listened to shocking evidence about the work of town pathologist Dr Michael Bottrill and the failures of the national cervical screening programme.

Yesterday, the women met again.

This time they expected to hear answers to their questions as the ministerial report into the scandal was released.

But many were disappointed that health bureaucrats presenting the report were firmly focused on the improvements they had made to the programme, rather than explaining how the problems developed. And who, if anyone, was to blame.

Where the faults lay

Nevertheless, the very detailed 273-page report, penned by inquiry head Ailsa Duffy, QC, clearly finds fault with the practice of Dr Bottrill. It says there was "ample evidence to show that there was an unacceptable level of under-reporting at Gisborne Laboratories between 1990 and March 1996."

It also squarely places responsibility for the mass under-reporting of smears with the Ministry of Health, which had failed to properly design and develop a safe and effective screening programme for a decade.

"Ultimately it was the flaws in the National Cervical Screening Programme that permitted Dr Bottrill to practise as he did."

The report points out concerns that Dr Bottrill worked alone, had no checks to ensure his work was competent, his laboratory was not accredited and he had no refresher training.

Dr Bottrill's failings

The report says an assessment would have shown that Dr Bottrill was being overly cautious in diagnosing abnormalities and he had "calibrated" his eyes to read smear tests with a very high specificity - in plain language, he was giving smear tests the benefit of the doubt too often.

But the committee does absolve him to a certain extent, by concluding that he was unaware of the risk his practices posed.

Dr Bottrill was not at the Gisborne meeting yesterday, but his lawyer Christopher Hodson, QC, said he accepted the findings and was sorry for what had happened.

Compensation problems

Women at the meeting were angry that the report did not give them the right to seek compensation for personal injury.

The inquiry says the notion of compensation is contrary to the philosophy of the Accident Insurance Act 1998, which prohibits suing for personal injury.

Cervical screening improvements

The report has found that significant improvements have already been made to the structure and delivery of the National Cervical Screening Programme.

But although the Government plans legislation to make sure the programme can be properly monitored, the changes do not go far enough.

The report says the legislation should give health officials access to all information about the women in the programme for evaluation and research without their consent. This does not sit well with women's health advocates, especially those representing Maori.

No separate cancer agency

While finding fault with the Ministry of Health, the report surprised cancer experts by recommending the national screening programme remain under ministry control.

Their hope was that the report would recommend a standalone cancer control agency independent of health funders and the Government, so that it would not be vulnerable to fragmentation and sudden policy changes.

Health Minister Annette King says the programme will be managed by a separate ministry unit under the control of the public health directorate. It will have its own budget.

The report recommends the screening programme should be treated as part of a national cancer-control strategy. Such a strategy is being developed by a trust, set up and financed by the Cancer Society, and will be presented to the ministry in June.

Smear reporting - the rest of NZ

An unresolved concern for both the inquiry panel and the women in Gisborne was that the ministry was unable to say if similar under-reporting of smears had happened in other parts of the country.

During the inquiry, health experts recommended an audit of cancer cases in other areas, but the plan to trace the medical and screening histories of women with invasive cancer ran into a legal block in section 74a of the Health Act, which prevented the release of personal information from the cervical screening register.

Ailsa Duffy had planned to challenge the act in the High Court, but this idea was dropped. The audit has still not gone ahead.

The panel's fear for other women was the catalyst for the recommendation to change legislation to allow greater access to medical records.

Ailsa Duffy says it is vital that the remaining phases of a national evaluation of the programme, set out in a plan in 1997, go ahead. "It is imperative this exercise is completed within the next six months."

Unless the evaluation is carried out fully, the possibility remains that the national average is flawed and there is systemic under-reporting in laboratories, she says.

But the Ministry of Health has indicated that the work will not be finished until August next year.

Mrs King said officials did not want to carry out a "quick and dirty evaluation" just to meet a deadline. She wanted a thorough evaluation.

Should the evaluation eventually cast doubt on the accuracy of other laboratories, the panel has recommended that all women be invited to re-enrol in the programme and be offered two smear tests 12 months apart.

This would reassure women that if their past smears had been read wrongly, they would have a fresh opportunity to be screened for cancer.

The report also calls for the programme to be evaluated by lawyers to ensure those responsible for running it have legal authority, after revelations that past national coordinators had no power to force laboratories to seek accreditation.

Maori data regulations

The report has also encouraged officials to look at the Kaitiaki regulations, which guard data about Maori women in the screening programme.

The report says these regulations have hindered essential research into whether the programme was working.

Changes should also be made to ethics committees' guidelines to ensure that they did not block auditing, monitoring and evaluation. In the past, the committees may have "unwittingly contributed to the delay" in various monitoring and evaluation programmes.

The report also says it considers the ethics committees may have had a detrimental effect on independently funded evaluation exercises, and recommends that the committees' guidelines be reconsidered.

An easier complaints system

The report wants a user-friendly complaints system so women do not have to battle health agencies for answers, as in the case of the woman whose five-year crusade sparked the Gisborne inquiry.

The report recommends that Accident Compensation, the Medical Council and Health and Disability Commissioner be legally obliged to warn the head of the cervical screening programme of complaints about the reading of smears.

Women must also be made aware that screening may not detect cervical cancer.

"It is of concern to the committee that in 1990 an assumed timidity and ignorance on the part of women could be given as a reason not to fully inform them."

It says doctors need to be reminded that they should be alert to symptoms rather than relying on smear tests alone. It also warns pathologists to be more open minded and alert to the possibility that colleagues' work could be "sub-optimal."

Acting on the report

The Ministry of Health told the women yesterday that of the report's 46 recommendations, 27 were under way or completed.

The ministry has finished some evaluation, quality standards are in place, and data management has improved.

Each accredited laboratory must now do a minimum of 12,000 smear readings a year to ensure staff remain appropriately skilled.

Jane's battle became a nation's

The catalyst for the inquiry was one woman who fought for years to find out why she had developed cervical cancer despite having four normal smears.

The former patient of Dr Michael Bottrill had a radical hysterectomy and massive doses of radiation therapy in 1995.

Known to Herald readers as Jane, the woman whose name is suppressed applied for damages for medical misadventure from Accident Compensation in 1995.

ACC referred the matter to the Medical Practitioners Disciplinary Tribunal, after it found that Dr Bottrill had failed to observe a reasonable standard of skill.

The tribunal later found him guilty of conduct unbecoming.

The next year, Jane filed High Court proceedings against Dr Bottrill for gross negligence, claiming exemplary damages. Her case failed by a narrow margin.

But once the full detail of the Gisborne situation emerged with fresh evidence about the extent of Dr Bottrill's under-reporting, she was granted a retrial. The Court of Appeal is considering an appeal against the retrial, filed by Dr Bottrill's legal team.

After the High Court trial in 1999, Jane's lawyer Stuart Grieve, QC, wrote to health officials with concerns that other women could be in jeopardy.

Alliance MP Phillida Bunkle revealed in Parliament that the cancer scare related to Gisborne. Until that time the name of the town had been suppressed - causing widespread concern among women throughout the country.

In mid-May 1999, the Health Funding Authority launched an investigation and almost 23,000 cervical slides were re-read at a Sydney laboratory.

Almost 1500 women were told their results did not match those found by Dr Bottrill. A ministerial inquiry was announced. The inquiry began on April 10 last year and ended on September 28.

Full report of the Inquiry