Vicky Phelan, the mother of two whose fight for life shone a light on the gross mismanagement of the national cervical screening programme talks to Limerick Voice about how she manages family life with her ongoing campaign for accountability in the Irish healthcare system.
Back in April, the 43 year old helped to expose how over 200 Irish women had received false-negative test results from CervicalCheck, by refusing to sign a non-disclosure agreement during her High Court action against Clinical Pathology Laboratories Inc.- the lab responsible for the incorrect result from her 2011 smear test.
While it was the US lab’s testing that led to the false-negative test result, it was the fault of CervicalCheck and the wider Irish healthcare system for failing to make her aware of her audited test results until December 2017.
Despite the numerous failings of our healthcare system, Ms Phelan feels that the medical profession has largely gone unchallenged, allowing for scandals, such as CervicalCheck, to continue to happen.
“The medical profession has not been tackled, it’s almost like medical abuse in some cases. We had it with the church- the church had such control and such dominance over people in Ireland for so long, and we’ve challenged that, and now we no longer take what they say as sacrosanct.
“I think the medical profession is like that- we’ve always bowed down to them up to now, but at the end of the day, they’re only doing a job, and they’re supposed to be doing a job for us, for the patients. Patient centred care, that to me is the end goal of all of this” she urged.
Bringing such an injustice out of the shadows was never going to be an easy task, but the reaction from some people within the medical profession has been an eye-opener:
“I go to the hospital, to St. Vincent’s, every three weeks for treatment, and you wouldn’t believe the looks I get from doctors on the corridor. They look at me like I’ve upset the applecart, I’ve upset their cosy little cartel.
“At the end of the day, I’m not there to be anyone’s friend, I’m there because I want things to change, because I want to make it better for patients.”
Putting patients first is also the cornerstone of the Scally Report, a 170-page inquiry into the CervicalCheck scandal, which Ms Phelan believes holds the key to Irish women being provided with a cervical cancer screening programme that they can trust.
“The two things that came of the Scally Report for me were the fact that he [Dr Gabriel Scally] did find that the screening programme that we have was badly managed, badly governed and doomed to fail- so it wasn’t just me saying it, this is a fact. But also, he didn’t just say that this was a failure, he has given a template and a road map for how to fix it.
“The very first day I met Gabriel, we sat down, and we had a chat, and he asked me to tell him what happened, and I told him everything from start to finish, and at the end he said ‘Well, what would you like to see Vicky?’
“I said ‘I want to see the women listened to’, because we weren’t listened to up to this point and that’s exactly what he did. He said, ‘I promise you that Vicky- that the women will be the ones at the centre of it’”.
The stories of the women affected by the CervicalCheck scandal are woven throughout the Scally Report; reminders that the test results are not just samples in a lab- they represent real women who have been failed by our healthcare system.
The 43-year-old remembers the dread of having to tell her young daughter and son, Amelia (13) and Darragh (7), that her cancer was terminal:
“When my court case went public, on the Monday in school- because it was all over the papers for the weekend, one of the boys in Darragh’s class asked him ‘Is your Mammy going to die?’, and that was the start of it.”
Explaining what was happening to her children was one of the most difficult tasks for Ms Phelan:
“Darragh loves Star Wars, so I thought I have to find a way for him to understand what cancer is. I drew a tumour, and I said ‘Right Darragh, this drug that I’m on is called…’ and I gave him the name, ‘and they put it into my body and what it does is it’s like it turns into these little fighter pilots from Star Wars.
“So you see this tumour, you have to imagine the pieces breaking off and it’s getting smaller’, so that was it and he remembers that. I have had shrinkage, so when I get the results of scans I say the fighter pilots are working.”
Amelia is much more aware of the seriousness of her mother’s illness, but she also knows the extent of Vicky’s strength, “she knows what I’m like, she knows I’m a fighter- she’s the same way herself, that I’ll keep fighting this until I can’t.”
Although Vicky is in high demand nationwide, accepting awards almost weekly for her courageous work in the CervicalCheck scandal, life with her family always takes precedence:
“It’s the small things [they like]. As long as I’m there to bring them to school and collect them, or sit down and watch movies- they’re the things they want you to be there for.”
While Civic Receptions and Honorary Conferrings have become part of the Phelan family’s schedule, she knows that sometimes normal life has to come first:
“Amelia didn’t go [to the conferring in UL] because she had her own graduation from sixth class. My mother said, ‘Should she not be here?’ and I said ‘No, I’ve asked her and she said she wanted to be with her friends and I’m not going to force her.’ That was special for her and it was her day.”
With Amelia growing up so quickly, Vicky is acutely aware that her daughter is part of the next generation of girls who will rely upon the Irish healthcare system for cancer screening, and she is determined that the system will not be able to fail Amelia as it has failed her.
“The reason I’m doing all of this is because I want to leave behind a system that [Amelia] can trust. I want her to be able to go for her smears and not have to worry about ‘Is this going to be correct?’ or ‘Where’s it going to be analysed?’” she insisted.
While the Phelan family’s lives have been turned upside-down this past year, the contribution Vicky has made to bettering healthcare for Irish women is unparalleled.
If faced with the opportunity to take it all back, in return for a cancer-free life, she wouldn’t:
“I don’t think so, I know that sounds stupid, but because we’ve been through an awful lot as a family, I think that’s why I’m as strong as I am, because I think bad experiences shape you. They can shape you and make you a better person, or you can lie down and take it.”
Despite the obvious wrongdoing which the inquiry into CervicalCheck revealed, as of yet, no one has been adequately held to account- something which Ms Phelan continues to work towards.
“I see my role, for as long as I’m here, is for accountability- which won’t happen in this country unless there is legislation… I’m talking about everywhere, from porters right the way up. There has to be accountability across the board and until we have it, nothing is going to change.
“Unfortunately, until we have legislation brought in, we’re not going to get any accountability really. The only accountability I can see us getting at the moment is actually making things right for the women and making things right for the programme” she admitted.
Although no one would blame her for turning her back on our healthcare system, the 221+ campaigner insists that she still believes in Irish healthcare and is sure the screening for cervical cancer can recover from this dark period.
From the moment her story went public, she has been adamant that women should still partake in cancer screening, knowing that it could save their lives.
“What’s the alternative? Get cancer? You don’t want this. I think [this mistrust] is well founded. It’s going to take time to get things back on track, but I think we’ll get there.
“What I say to women, at the moment, the way things are, there won’t be too many mistakes made. Now that they’re being watched, they’re going to be far more careful.”
Moving forward from here will be no easy task, especially for the 221 women whose lives have been changed by this story, but the 221+ support group may offer some help along the way.
The group was set up by Vicky, Stephen Teap, whose wife died as a result of Cervical Cancer which was missed by CervicalCheck, and Lorraine Walsh, another victim of the scandal. Independent of the HSE, 221+ aims to offer support to the women in any way they can.
“There are still women of the 221, who don’t want anything to do with us, because they’ve done cancer and they want to move on…But the thing is, what we’re trying to say to them is, ok we understand, but what about the side effects?
“What if you’re having side effects from treatment? You might be clear at the moment, but you may have issues around fertility, or issues around having sex, or you might need some counselling-and that’s what we’re there for and we have money to pay for that for you. Come and get some help” she urged.
After months of fighting for justice for the 221 women, it’s a wonder how Ms Phelan still finds the will to keep going. She recalls what fellow 221+ member Stephen Teap told her:
“Stephen said when his boys are older, they’re only five and three at the moment, and they find out about why their mother died, they’re going to ask the question ‘What did you do Dad?’
“He said, he could have sat at home, done nothing, been bitter and angry about what had happened, but he said no- he decided ‘I need to be able to say to the lads, when they’re old enough, that I fought for answers and we made it right.’
“That’s what he’s doing this for- to make it right so that this doesn’t happen to other families.”
For Vicky Phelan enjoying Christmas will be an act of defiance to the doctors who said she wouldn’t live to see it, and a celebration of her steadfast resilience.
Her Christmas wish for herself, and her family, is simply this:
“That I’ll still be well, and I’ll still be here- that’s all my kids want, for mammy to still be here, and that’s the only thing I want.”