A LEADING expert on cervical cancer has insisted the current controversy surrounding CervicalCheck screening should not be classified as a “scandal” because it was always known that some smear tests would not detect cancer.
Dr Nóirín Russell, Lead Colposcopist at University Hospital Kerry and a lead clinician for early pregnancy care at Cork University Maternity Hospital (CUMH), said colposcopy clinics have been flooded with a large volume of calls from concerned women in recent weeks.
“The media focus on this CervicalCheck scandal — which is not a scandal, it’s normal practice — has terrified women and that’s been reflected in the work of colposcopy clinics over the past two weeks,” said Dr Russell.
In hindsight, Dr Russell said it would have been helpful if clinicians and patients had been informed that an audit was being carried out into old smear tests, to give the patient the option of deciding to receive a result or not.
However, she stressed that the audit was done to improve the screening outcomes.
“The audit was well-intentioned. It was to try to work out is there anything we can learn from cases where cancer developed in women who had attended for smear tests,” said Dr Russell.
“It was inevitable that the audit would show up test results that were erroneously reported as normal.”
“It’s really important that patients are reassured there was no intention to harm, that no diagnosis was withheld from patients.
“Unfortunately, we can’t go back in time and do something differently four years ago to ensure different results,” she said.
“Of course, that’s devastating for anyone who is now in the situation of having cervical cancer, that screening failed you.
“I would be devastated if it was me. If I found out I had cervical cancer after previous tests showed I didn’t, I can completely understand that devastation,” she added.
“This means that screening failed me, not that it doesn’t work.
“That is a reality of screening programmes, it will only detect 80% of cancer.
“To put that another way, one in five women will have been failed by screening.”
Dr Russell said the level of misinformation has been concerning.
“It’s been very concerning for me as a colposcopist to see the misinformation that’s being circulated with regard to CervicalCheck in the past two weeks,” she said.
“One of the points that’s being misrepresented and which has led to scaremongering is that these audits only started after the cancer was diagnosed.
“This is a critical point,” she added.
“There was no withholding of the diagnosis from the patients, as soon as the doctors diagnosed cancer, the patients were informed and treatment started.
“As with any screening programme, it is never, ever going to detect 100% of cancer.”
Screening tests are not diagnostic, Dr Russell explained.
“If you perform 1,000 smear tests, in that 1,000 there would be 20 abnormal smears,” she said.
“CervicalCheck would pick up 12 of those abnormal tests.
“That is a known normal,” she added.
“A smear test brushes for abnormal cells.
“To diagnose cancer you actually have to have a colposcopy and a biopsy performed which removes a large specimen of tissue, usually around two to three millimetres deep.”
While Dr Russell said the current smear test is good, she said there are better options, such as the HPV testing, which it is hoped will be in Ireland by 2019.
“There have been 50,000 treatments for pre-cancerous cells since the programme began,” she said.
“Of the 50,000 treated, 90% will never need another treatment, they are cured. It’s a very good test, but it’s not a perfect test,” she added.
“Since the programme began in 2008, there has been a 7% reduction in cervical cancer year on year.
“It has reduced the number of women dying from cervical cancer, which is the goal of any screening programme, but unfortunately it will never reduce it to zero.
“What we hope with HPV vaccination, which is the future, if all our women are vaccinated, that will significantly reduce the amount of cervical cancer.
“The evidence suggests that this will have a better rate of picking up cancer.”
Dr Donal Brennan, Professor of Gynaecological Oncology at UCD said: “HPV vaccination will reduce the number of people in the population with HPV infection and will allow us to replace standard screens with HPV testing.
“Although the tests will still be taken like a smear, it will be analysed in an automated fashion, giving a simple positive or negative result, and will remove the risk of human error associated with standard smear tests.
“It is estimated that HPV testing will reduce the false negative rate of testing to 10 to 15 percent and increase the detection of cervical cancer by 30%,” he added.
Meanwhile, Cork Fine Gael Senator Colm Burke revealed he will raise the issue with Minister for Health, Simon Harris.
“I will be asking the Minister to fast-track the introduction of HPV testing, to have in place all of the people with the necessary skills to deal with it, and that we would if at all possible, provide as much of the back up support for the frontline staff here in this country rather than outsourcing analysis to other countries,” he said.
Dr Russell said it was crucially important that women realise that smear tests are still the best method available in Ireland to detect cervical cancer.
“Women who aren’t screened are more likely to get cervical cancer without it being detected and die from it.
“It’s important that women of Ireland don’t lose faith in the CervicalCheck programme and continue to get tested,” she added.
Dr Russell also said that the misunderstanding surrounding the audits led to the unnecessary resignations of Grainne Flannelly, the clinical director of CervicalCheck, and Tony O’Brien, Director General of the HSE.
“I completely and utterly agree that patient information is their information and their information only and should be given to them,” she said. “But I fail to see how the Grainne Flannelly and Tony O’Brien stepping down has brought us to a better place or improved the situation.
“I know from looking at other countries, such as the UK, some actually publish what they do with audits in this exact scenario,” she added.
“They’ve shown that, when auditing more than 5,000 smears of women who were diagnosed with cancer, 51% were still negative, for one third a repeat smear should’ve been advised and in 155 cases (3.1%), colposcopy should’ve been advised, so similar findings to here.
“Only 53% of UK clinicians, when they were surveyed, said they shared that info with their patients and there are various reasons given for this. To my knowledge, there are no other European countries that share the audit findings with patients.”
Dr Russell said a 2016 HSE memo “really upset women because they felt there was an intentional plan to keep information from them.”
She added that open disclosure will also need to result in ‘no-fault compensation’.
“If you do bring in open disclosure, you also need to look at legislation for no-fault compensation because the two go hand in hand,” she said.
“One of the reasons doctors in the UK gave for not providing the information was fear of litigation.
“If your physicians and doctors are operating in a culture of fear, that’s not going to promote open disclosure, especially when you’re dealing with tests that are fallible by humans who are fallible” she added.
“Doctors are humans who care deeply about their patients and are trying to provide the best medical care possible. If, every time there is an error made, they are vilified, ridiculed and publicly shamed, we are going to have a situation where no one will want to become a doctor.” The HSE confirmed on Monday that the number of women who have died in relation to the CervicalCheck incident has risen from 17 to 18.
More than 10,000 callbacks have been requested by women across Ireland since April 28, with just under 4,000 still awaiting contact.
Darragh Bermingham talks to Dr Nóirín Russell about the public outcry over the CervicalCheck controversy.
Dr Russell says the situation should not be classified as a scandal.