Letter From Elsewhere: Unfinished Business
In 1993, in a book called, prophetically, Unfinished Business, Sandra Coney wrote: “The National Cervical Screening Programme is one of the few tangible outcomes of the Cervical Cancer Inquiry.”
Why did it take the Inquiry to get a national screening programme off the ground? Because an influential group of gynaecologists at National Women’s Hospital - including Dr Herbert Green - were opposed to such a programme. Before the programme was set up, smears were taken repeatedly from the same group of (largely better-off, well-informed) women, while other women missed out completely. This kind of opportunistic screening, Coney stressed, was not only expensive, but also ineffective in reducing the death rate from cervical cancer. By the 1980s, as Judge Cartwright pointed out, New Zealand was out of step with the rest of the world.
Getting a programme was one thing - making it work properly was another. Cartwright stressed the need for central organisation (with regional bases); a central register; strong leadership; choices for women, so that screening was both acceptable and available for all; a widely representative advisory group; and quality control of all aspects of the programme. These recommendations were made “after a thorough investigation of screening programmes around the world, and...access to a high level of advice”.
Unfortunately, they were largely ignored. This was the first population-based screening programme in New Zealand. Yet no policy was written to guide the programme’s development. The Department began setting it up without “any clear goals or organisational guidelines for what it was trying to achieve.” In this policy vacuum, the computer firm developing the software for the register was left to make crucial decisions, such as how women would be recalled, “which would bind the programme for years to come”. Instead of the recommended “strong leader”, a junior staff member was seconded. Instead of automatic enrolment, the Department went for an “opt-on” system which could achieve only 30-40 percent coverage. Not until 1993 was legislation passed for the “opt-off” system required to achieve the 80 percent coverage needed for the programme to be effective.
By 1993, wrote Coney, the programme was
“handicapped by hasty, ill-thought out actions taken in the
early days, and the omission of other critical steps
necessary to establish a viable, effective programme.” She
summed up the key problems:
- the unrealistic time frame - it was announced in 1988 that the programme would be up and running by late 1989
- failure to appreciate how complex the task was
- failure to establish co-ownership of the programme between government, health care providers and women
- insufficient attention to Maori women’s views of the programme
- failure to explain the programme to health care providers and women.
Finally, Coney highlighted what was perhaps the most critical issue in terms of the problems highlighted by the Gisborne inquiry: an “ideology of devolution” within the Health Department (as it then was), setting up a model for health provision which the cervical screening programme did not (and could not) fit. The devolution model saw health services as “personal matters, a question of an individual patient being treated”. The results for the programme were disastrous. Instead of one central register, for example, there were 14. National co-ordination became the responsibility of a small unit within the revamped Ministry of Health, while the new Public Health Commission handled health promotion, and both were responsible for policy development, monitoring and evaluation. The Public Health Commission has of course since been axed. The regions were left to decide how they would run screening. The result was that by 1993, some of the programmes had been “gutted”.
It was never clear why the Department/Ministry of Health “chose to deviate” from most of the Cartwright recommendations, “nor who was responsible for deciding to do so”. In the wake of the Gisborne inquiry, it is still not clear. It’s true that since 1996, some of the worst flaws in the programme have been attended to. But it is by no means obvious that what Phillida Bunkle calls a “culture of resistance” to recognising what is needed, and putting it in place, has come to an end.
In 1993, Coney wrote, “It never ceased to amaze me...that our greatest obstacle was the Department of Health. At times it felt as if I had strayed into a Kafka novel.” Seven years later, those attending the Gisborne inquiry must have often felt the same way. Throughout the inquiry, the Ministry of Health insisted that Bottrill’s failure to detect abnormal smears was an isolated case of personal incompetence. But the report makes it clear that this is not necessarily true. In the absence of na effective monitoring system, an abnormal number of abnormal smears may have been missed in other areas.
The current Minister of Health, Annette King, is repeatedly stressing that 27 of the Gisborne inquiry report’s 46 recommendations are “already under way”. But Bunkle points out that even today, the programme is run from the relatively low ranking of Level Four within the Ministry of Health. Evaluation has been called for since 1997. While it has now begun, it will not be completed until the middle of 2002. What will happen then? Yet another round of recommendations, bearing an uncanny similarity to Cartwright’s original list, and another round of reassuring noises from the politicians and the officials? And worst of all, will there be yet another roll-call of women who are ill, mutilated, dying or dead, because those who run New Zealand’s health system have once again proved that they are unable to learn the lessons of the Unfortunate Experiment?