'It's a nice feeling to know that I am doing some good, beyond what I ever imagined'
Vicky Phelan is uncomfortable with being a national hero, but is determined to help others caught up in the cervical cancer scandal, writes Maeve Sheehan
IN the coming weeks, a number of women who are gravely ill with cervical cancer are expected to begin legal proceedings. They are among the 209 women at the heart of one of the biggest public health scandals in recent years. For most, all they knew was that they had cancer.
What they did not know was that they were wrongly given the all-clear by CervicalCheck. Had their abnormalities not been missed, they could have been treated earlier and their cancers may have been caught earlier.
According to solicitor Cian O'Carroll, they are women who are "in a very urgent situation, just as Vicky Phelan was".
Were it not for Vicky Phelan, most of these women would be none the wiser.
Since she settled her High Court action against a US lab for €2.5m, refusing to sign a confidentiality clause in order to expose a scandal at the heart of the CervicalCheck, she has been hailed a national hero.
A review of cases by the Health Service Executive has revealed that Vicky was one of 209 women with cervical cancer who could have benefited from earlier treatment but who were wrongly given the all-clear when they were screened. The HSE said 162 of those women were never told of the audit outcome and that 17 women had died.
Vicky has exposed a crisis that goes to the heart of the medical establishment, exposing its paternalistic core of "doctor knows best" and an overwhelming lack of accountability.
"If people told me this was going to happen, I would never have believed them.
"People are calling me a national hero and I'm not really comfortable with it but at the same time, it is a nice feeling to know I am doing some good, beyond what I had ever imagined," Vicky Phelan told the Sunday Independent this weekend.
She is on the phone from the car, travelling from Galway, where she has had hyperbaric oxygen therapy, to Portlaoise for high doses of vitamin C infusions. She says her health is good and she is full of fight.
Another source of strength for her has been in helping other women with cervical cancer, and in some cases, the families of women who have died.
"I am trying to keep on top of my messages at the moment. I'm getting actually thousands of messages from well-wishers, which is lovely. I will read every one of them when I get the time. I'm trying to actually go through them at the moment to make sure I am replying to women and the husbands of women who have died, because they are the ones that I need to prioritise at the moment."
Among those who have contacted her are three women who have cervical cancer and one man, whose wife passed away last year. According to Vicky, this woman was one of the 17 women referred to by the Health Service Executive as having "sadly died".
"He is extremely angry and very upset obviously. He has two young boys," she says. She is encouraging others to speak out: "Other women and partners of women who've died need to come forward to push this further, because only until people see the faces of the children and the families who are left behind in all of this, that's what needs to happen if we are to get accountability."
Vicky is keen to form a pressure group, drawn from the women and the men who have been affected so horrifically by the scandal, to harness their anger to effect change in the health service.
But there are obvious difficulties, given the fact that those affected are not in the best of health.
"There are husbands who have lost their wives but most of us are women and in most cases, most of us are in treatment at the moment. So that is the difficulty," she says. "Gynaecologists and clinicians are organising these meetings with their patients this week to give them some clarification. But it seems to me that they are lining up these meetings in the evenings, when their clinics are finished, to meet with these patients to obviously give them time to [take in] with what they are going to tell them, that they have had cancer for far longer than what they originally thought. Some of the women are not in remission, they are actually having treatment at the moment for advanced cancer."
She has followed the unfolding crisis at CervicalCheck closely, mostly in between her treatments and therapies, from her reclining chair, with mobile phone in hand. She has just joined Twitter, and used to it share her dismay at the performance of a panel of HSE executives, led by director general, Tony O'Brien (inset), at the Oireachtas Committee hearing last week. She was particularly annoyed at Mr O'Brien's refusal to accept full blame for the crisis.
"I've said this all week. He needs to stand down. He is not going to do it voluntarily because that was quite clear at the Oireachtas committee, that he feels he hasn't done any wrong. But speaking personally, from my own case, I think he should stand down. Absolutely. He has said he didn't hear about my case until he heard it on the news. That's not good enough. For two reasons. He is the head of the HSE. That just shows incompetence and if that's the case, he shouldn't be in the position he's in on €192,000 a year," she says.
It was Vicky's mother who called her with the news that Leo Varadkar, the Taoiseach, is to seek her input into the scoping inquiry that is to report back by June.
"That scoping inquiry will find out as much information as we possibly can in a matter of weeks and then we will have a statutory inquiry," he told the Dail.
She is not short of ideas and wants to be involved. But she also needs to focus on her own health. The HSE has offered to pay the substantial cost of Pembrolizumab, a drug which she takes every three weeks, and costs more than €8,000 for every dose.
At one point, after talking through the reams of drugs and treatments, she sighs: "Look, I don't think I'm going anywhere," she says. "I think half the battle with cancer is your attitude and my attitude is I want to live. I am very much alive and that is how it is going to stay."
"It is absolutely great for me to have that support from everybody. It really is just such a lovely warm feeling to know that I have the country behind me. I am at the point where I can't go anywhere without people stopping me in the street, which is lovely. It is a bit embarrassing because I never sought out this but I really appreciate it."