Monday 25 March 2019

Dr Ciara Kelly: Despite everything, women should still feel reasonably secure that checks work

Keeping a patient in the dark is unforgivable, but any testing system will throw up false negatives, writes Dr Ciara Kelly

For abnormal cells. Stock photo
For abnormal cells. Stock photo
Dr Ciara Kelly

Dr Ciara Kelly

It's been a difficult few weeks for women. And that's an understatement. Vicky Phelan's court case over her treatment by CervicalCheck, our national cervical cancer screening programme, has caused a great deal of distress for many of us. And hearing words such as 'scandal', 'crisis' and 'cover up' when it is in relation to cancer treatment in a 42-year-old mother is something that was always going to make people feel rightly angry and afraid.

What was clear to me looking at this unfold last week was that, certainly initially, neither the Minister for Health nor the Opposition spokespeople understood exactly what was going on. And it was also clear that - despite no one understanding it - that wasn't going to stop political point-scoring or, indeed, media scaremongering, even if women were being terrified in the process.

So I'd like to attempt to allay some of that fear and reassure woman that despite everything they've heard, there's still reason for them to feel reasonably secure that CervicalCheck is working and they don't have to feel the level of anxiety and fear that I believe they've been experiencing.

CervicalCheck is a screening programme that screens asymptomatic, healthy women for pre-cancerous abnormalities by doing cervical smear tests on them every three to five years. Any abnormalities that are picked up are monitored, with either repeat smear tests or by referral to a colposcopy clinic, which is a specialised gynaecology clinic that takes a closer look at the cervix and can also treat some pre-malignant conditions.

Within our screening system there are false negatives - tests that are reported as normal but are actually abnormal. And false positives - tests that are reported as abnormal but are actually normal. And that's true of every screening system in the world. False negatives and positives are one of the reasons we do repeated smear tests - to double check results. And the rate of false negatives in cervical checks runs at up to 30pc which is in line with international standards.

But despite these limitations, CervicalCheck has, through the three million smear tests it's carried out in the past decade, managed to reduce the incidence of cervical cancer in this country by 7pc a year. That's considered a significant success story in public health terms. It has, in fact, saved many women's lives.

Vicky Phelan had a smear test in 2011 which was reported as normal and a repeat smear test in 2014 that diagnosed her with cervical cancer, and she started to undergo the harrowing treatment that that entails. An audit in 2014 showed that her 2011 test had been a 'false negative'. In other words, it had been reported as normal but there had been abnormalities on it. And that's a personal tragedy for Vicky Phelan and her family. It's incredibly sad to think that, had those abnormalities been picked up in 2011, she might have begun her treatment sooner and she might not be a mum of young children living with a diagnosis of terminal cancer today.

However - and this is a really difficult thing to accept, I know - false negatives are part of every screening system and cannot be eliminated. There will always be false negatives - that's the nature of screening as opposed to diagnostic tests. And all you can aim for is that they're held at acceptable levels by international standards. Which is why audits on screening programmes are carried out to see if the level of false negatives falls within the acceptable range.

The real issue is that Vicky Phelan wasn't told any of this. It may not be possible to prevent false negatives from occurring but it was known that Vicky's 2011 smear was one such test and she was never informed. Indeed it was actively kept from her for several years after her cancer had been diagnosed, despite the lab, and subsequently her doctors, being aware that that was the case.

I believe she had a right to that information. I believe all women, and men, have a right to full disclosure and mandatory candour around their medical records. No one should be going through our health care system as a patient, with institutions knowing more about their medical condition than they know about it themselves.

This all came into the public domain through Vicky Phelan courageously refusing to sign a gagging order as part of her court case and we all owe her a debt of gratitude for that. But it was all so poorly explained that it struck fear into the heart of every woman in the country. The helpline that was set up for people with concerns crashed almost instantly - and when it finally worked, all it did was take names and addresses, rather than give any kind of advice or reassurance. So there was nowhere for women to look to for guidance. And politicians had no qualms about exploiting the fears of women in order to score political points.

But it is important for women who are afraid of what this means for them to understand a few things. Firstly, the truth is that most women's smear test results are accurately reported. And of those who have received a normal result, the chance of going on to have cervical cancer by their next smear test three years later is less than 1pc. The other truth is - especially when routine HPV screening becomes part of all CervicalCheck smear tests - it's probably impossible to make the screening system much better than it already is.

Yes, Hiqa needs to go in and make sure that we don't have rates of false negatives that are out of line with international standards. Yes, women deserve far more respect and wholly better levels of communication and information about their results than Vicky Phelan was given.

But it will not be the case that there will be a new cervical screening system that eradicates false negatives, however much we wish that were the case. Nor will every woman who has a false negative smear test be entitled to compensation - with a false negative rate of 30pc, simply put, the screening programme would collapse in financial ruin. Which ultimately will result in far more women's lives being lost.

If you actually want to maximise your protection against cervical cancer - and it is an awful cancer that kills one third of women diagnosed with it, within five years - consider the following: Practice safe sex, use condoms, the majority of cases are caused by the sexually transmitted HPV virus. Stop smoking - it increases the risk. Get regular smear tests - the nature of repeat testing and the generally long time-period over which cervical cancer develops, means that the screening programme picks up most cases.

If you are still worried after reading this, go get a repeat smear. Simon Harris has said that any woman who is worried can get one for free. If you've any symptoms such as pelvic pain, bleeding after sex or in between your periods, go to your GP even if you're not due a smear test.

And for God's sake, vaccinate your daughters against HPV. We now have a safe vaccine that reduces the next generation's risk of ever developing this horrible cancer that 300 Irish women will be diagnosed with and 90 women will die from this year - most of them in their 30s and 40s.

Prevention remains, in this instance, far better than cure.

@ciarakellydoc Ciara Kelly presents Lunchtime Live on 'Newstalk' weekdays 12-2pm


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