There is no appropriate replacement for the phrase cutting your nose off to spite your face when it comes to women and smear tests. Believe me, I’ve tried. However, the import remains the same. If things keep going in the same direction we are in real danger of losing life-saving screening services and more Irish women dying that could have been saved.
Mention screening now and the reaction is almost overwhelmingly negative. It is too often viewed as a failure and a con job, designed to trick women and cause eventual death. Ireland is an absolute outlier in this regard. Unless we manage to turn things around the cost to women, and our daughters, will be enormous.
There are plenty of reasons why we might want to ignore the alarm bells. The CervicalCheck controversy, three years ago now, looms large in our national landscape. It jostles for room with all the other female-related scandals where Irish women continue to feel the after-effects of the ill-treatment of the State from symphysiotomy to mother and baby homes to reproductive rights. Trust, understandably, is very low.
We get regular reminders from the courts of women who die tragically from cancer, often leaving young children behind, after a seemingly endless and exhausting battle with the State. We view it as further proof — as if it were needed — that the State does not have the best interests of women at heart. It appears to give solid reasons for not trusting state-offered services such as screening.
But this ends up being a losing game for women. We stand in danger of screening services being withdrawn and not just screening for cervical cancer, breast cancer screening is also under threat.
The problems have become so entrenched, that even these warnings will be dismissed in some quarters as an attempt to dupe women even further. But we badly need to heed this straight-talking.
Those who run the screening services want to begin a conversation on the actuality that surrounds screening, of the many lives that are saved. There is a need to counter the belief that if a woman is dying it is as a result of negligence. They report it is often a struggle now to get women to attend screening.
Addressing the fallout, Nóirín Russell, Clinical Director of CervicalCheck said in conversations with doctors who treat cancer it is really upsetting to hear that some women are “turning down proven, evidence-based medicine and therapies that would lead to cure ... choosing to have weird and wacky stuff like vitamin infusions”.
In 2018 it was revealed that an audit had found that for hundreds of women diagnosed with cervical cancer the original results of their smear had been changed, and most had not been told.
Things have got so bad, said Dr Russell, that a woman being diagnosed with a Stage 1 cancer, as a result of screening, is seen as a failure here, but that would not be the case in any other country. For instance, of the women in the 221+ group, who were not informed of an interval cancer audit of their smears, 76% were diagnosed at Stage 1 or pre-cancer. “In most other systems that is considered a success. The majority of that cohort are well and unlikely to die of cervical disease. With Stage 1 there is a 90% chance of being alive in 5 years.”
National Screening Service chief executive Fiona Murphy said doctors who treat women with cancer report there is “palpable anger and mistrust”.
As someone who left Ireland 30 years ago and had a similar line of work in Scotland she said there is a “mistrust of the State in Ireland that is different in other countries, an anger against the State I didn’t feel in Scotland”.
Dr Russell said that maybe it was because Ireland “was so late to the screening game” that the emphasis on what screening could do went way too far on the positive side, with no explanation on the limitations. Even many GPs were ignorant of the specifics of screening. Considerable work has been done in recent times on this particular aspect.
It is worth reminding ourselves the purpose of population screening. It is for people who do not have symptoms. It is a preventative strategy and aims to improve the population outcomes for the conditions which are being screened for. This means reducing the rate of the condition being targeted. “Screening is like a sieve,” explains a pamphlet from the NSS. “The idea is to use the test (the sieve) to ‘catch’ as many people as possible with the condition and as few people without it as possible.” There will always be some people with the condition that will fall through the ‘sieve’. If you make the holes in the sieve smaller to catch more people there is a danger that more people without the condition get caught too.
What is missing in so much of the discussion is that CervicalCheck — over a 10 year period — screened around 1.2million people up to 2018. Over 64,000 were treated for high-grade cell changes and 1,500 cancers detected. Every year 6,400 Irish women are treated for high-grade abnormalities and a proportion of these would develop cervical cancer if they were not identified by screening.
Dr Russell added that when we hear a woman very ill with cervical cancer saying she “does not want this to happen to any other woman” the sentiment is entirely understandable. However, the reality is that it will happen to another woman because that is the nature of screening and cancer. CervicalCheck diagnoses an average of 160 women with cervical cancer each year. So around 60% of cases are diagnosed during screening. “Ninety will die and it is completely possible there are some negligible cases in that, not all, and certainly not the majority. Most are in that grey zone.”
CervicalCheck faces around 250 claims. Of those 29 have been concluded, 22 of those by settlement. One was by court judgment and six were not resolved.
Fiona Murphy points out that in other countries, unlike Ireland, there are payouts only of around €20,000 to women in similar situations. “Ireland is so far off the charts other countries look at us and say what is happening is very dangerous.”
Women are not the only ones with a problem with screening. A new lab to be opened in Dublin, where Irish smear tests would be read, is being hampered by an unwillingness on the part of consultants and cytologists to work there. When approached to assess their interest in such a job the response is along the lines of: “No way, you are guaranteed to be sued. It is toxic.”
Similar is heard from radiologists in training who are opting away from breast screening because of the perceived risk to a career.
The warning for women from Dr Russell really is stark. “There is a very real risk that if the environment does not change we won’t have a screening programme.”