Twelve months ago today, a Limerick mother of two stood in bright sunshine on the steps of the Four Courts following the settlement of her case.
"There are no winners here today, I am terminally ill and there is no cure for my cancer," Vicky Phelan stated bluntly, minutes after being awarded €2.5 million in her case against a US testing lab over the alleged misreading of her smear tests under the CervicalCheck programme.
A review carried out when she had been diagnosed with cervical cancer found her earlier smear test under the programme was a false negative, but she had been left in the dark about this by the HSE for three years.
Having successfully resisted all attempts to get her to agree to a gagging clause, Phelan was free to reveal that other women were affected.
'It's been a crazy year. But I don't see this as real. I know there's going to be an end to it. I never got into this for celebrity or to be in the papers. I do it for a reason'
“Mistakes can and do happen, but the conduct of CervicalCheck and the HSE in my case, and in the case of at least 10 other women who we know about, is unforgivable,” she told reporters that morning.
The revelation sparked one of the biggest Irish health crises of this century; within days, it had emerged hundreds of women with cancer had also not been told that an audit had reclassified the results of their original smear tests.
One year on, Phelan is a national celebrity, recognisable by her first name alone. She has won countless awards, received honorary doctorates, and been on The Late Late Show for her role as a whistleblower. The BBC has made a documentary about her; a biography is in the offing.
“It’s been a crazy year,” she reflects, speaking to The Irish Times this week. “But I don’t see this as real. I know there’s going to be an end to it. I never got into this for celebrity or to be in the papers. I do it for a reason.”
'The only way that we've gotten things done in the past is shouting and screaming about it and unfortunately that's probably what's going to have to happen again'
It’s easy to forget she is still terminally ill. Access to the wonder-drug Pembrolizumab, to which she has responded well, has extended her lifespan for now.
“I can only fight for so much. People sometimes forget I am terminally ill, my time is limited. I don’t know how long this drug will work for.”
She might be trying not to over-extend herself, but along with Steven Teap – whose late wife Irene was also one of the 221-plus group of women caught up in the CervicalCheck controversy – and cervical cancer patient Lorraine Walsh, she continues to fight to keep the story on the national agenda.
“What I wanted was answers in the court case and I didn’t get them. And here I am a year later still trying to get them.
“The only way that we’ve gotten things done in the past is shouting and screaming about it and unfortunately that’s probably what’s going to have to happen again.”
The 221 group has a long list of promises it is pressing to have implemented. Phelan says the many delays are unacceptable, a state of affairs she ascribes to the issue slipping down the news agenda over the past year.
“The biggest thing, overriding everything, is the systemic failing, the changes that are required to make sure things like this don’t happen again.
"It requires multiple changes by a range of players across the board, between the HSE, the Department of Health and the legal profession. What we've noticed is that any kind of inertia or unwillingness on the part of one person or one group has held everything up. We've seen that repeatedly over the last 12 months."
Thus, there has been a “huge delay” in setting up the tribunal that will ensure women taking cases do not have to go through an adversarial process in court, she says. With the legislation for this still to be written, Phelan can’t see the tribunal being up and running this year.
Dr Gabriel Scally's report into the controversy was 'a watershed moment. It wasn't the usual insipid or token inquiry. He wasn't afraid to criticise'
“I understand it’s complicated. The problem is in the Attorney General’s office there aren’t enough people employed to draft legislation.”
The tribunal is “a long time coming,” she says. “The Taoiseach did say that women wouldn’t have to go through adversarial procedures but we’re a long way from that. That’s why I went to meet him last August. He made that promise and didn’t keep it.”
Pace of reform
The setting up of an ex-gratia scheme to compensate women for the HSE’s failure to tell them of the audit of smear tests has also been delayed.
“Six months on from when this was announced, we’re no nearer to having it up and running. The issue that we have with this is that we weren’t included. There was no engagement whatsoever with the 221-plus group on the terms of reference.
“We’ve repeatedly asked for information but we haven’t been given anything by the Department [of Health].”
She says she flagged the lack of consultation by civil servants in setting up an ex-gratia compensation scheme for these patients.*
While bristling with anger over the slow pace of reform, she acknowledges the positives of the past year. Dr Gabriel Scally’s report into the controversy was “a watershed moment. It wasn’t the usual insipid or token inquiry. He wasn’t afraid to criticise.”
'I wrongly assumed that if you work in an area where people's lives are at risk that you would get sacked. That doesn't seem to be the case in this country'
Scally’s identification of a culture of paternalism in medicine “blew us away,” she admits. “We weren’t expecting that at all.”
With others in the 221 group, she is meeting figures from the medical profession to address the issue “on an emotional level, not just at a clinical level”.
The promise of open disclosure, the creation of the 221 support group, the planned introduction of HPV testing and the plugging of key staffing gaps in CervicalCheck are other improvements she mentions.
But has she got the investigation she called for a year ago?
“No. But I’m never going to get that. We don’t have accountability in this country. That’s the biggest thing.
“I work in the public sector and I can see that people don’t get sacked. But I wrongly assumed that if you work in an area where people’s lives are at risk that you would get sacked. That doesn’t seem to be the case in this country.”
But didn’t senior figures step down at the height of the controversy?
“Tony O’Brien [former head of the HSE] leaving early, that’s not accountability, Gráinne Flannelly [former clinical director of CervicalCheck] leaving early, that’s not accountability,” she replies.
“It’s not that I want people to be punished. But until we have a situation in this country where people are held accountable for what they’ve done, these things are just gonna keep happening.”
Backlog
Also delayed is the independent review by the Royal College of Obstetricians and Gynaecologists (RCOG) in the UK of Irish smear tests, which is not expected until August, a year after it was due. Phelan predicts this review of a substantially wider cohort of women than was originally included in the HSE audit, will turn up many more cases where slides were misinterpreted.
She worries the current backlog of unread slides in the screening programme – now standing at about 80,000 – will lead to delayed diagnoses for some women.
Nonetheless, she believes the decision by Minister for Health Simon Harris to fund out-of-cycle tests, which is seen as the main cause of the backlog, was the right one.
More than 26,000 women who had never been registered with CervicalCheck availed of the offer of a smear and are now being monitored, she points out.
It is fair to say she is not a fan of Taoiseach Leo Varadkar, whom she has previously accused of being “all talk and no action”.
“Yes, and I’d still say that,” she says, laughing.
In contrast, her experience of dealing with Harris has been very positive.
“In fairness to Simon, when he has made mistakes he has owned up to them. He has been very forthcoming with us and he has constantly kept us in the loop when things were coming down the line.”
But isn’t he the line manager presiding over all these delays?
“The minister of the day has a certain amount of power but it’s the permanent representatives in the Department who are generally the problem in our experience. They just don’t want to move.”
Her new-found celebrity has created opportunities, which she has grasped with both hands; the chance of her daughter meeting Ed Sheerin, a box for the Munster match. "Why wouldn't I? You know what, I'm enjoying my life and anything that comes my way I'll definitely take it."
She was hospitalised for a week in February, the first time this had happened since her cancer was diagnosed.
“I’ve been very lucky. I haven’t had any complications, even the first time around. So it was very scary for me because I hadn’t been in hospital and at the time we didn’t know what it was.”
Things stabilised and she went with her son on a trip to Legoland a few weeks later. “Sure you know, you go to places like that and it’s full on, three days of constant going. I overdid it, picked up something on the plane. Instead of getting a cold I got a really bad chest infection.
“That took me three weeks to get rid of, so I’m kind of worried that I’m picking things up much quicker.”
That set her to thinking about a back-up to Pembro, which if it stops working would leave her with no other options. “I’ve been so lucky with this drug that I’ve had so few side effects. It hasn’t really interfered with my quality of life.”
She has already found a clinical trial in the US to which she could sign up to at short notice.
“It’s similar to what I’m on but with a little kicker. For me it’s good to have that because, you know, it’s a scary place when you don’t.”
* This article was edited on April 29th, 2019
