IT’S NOT OFTEN that a citizen campaigner has such a profound impact on the public in the way that Vicky Phelan has – and it’s even more rare that they greatly influence Government policy in such a short space of time.
It was confirmed this morning that Vicky had died, surrounded by her family, at Milford Hospice in Limerick.
Over the past four years, the campaigner has been praised for her endless strength, her determination in confronting the State’s obligations, and her courage to keep fighting during an “insidious” terminal illness, as Vicky herself described cervical cancer.
Knowing that her time was limited, the public showed repeatedly how grateful they were that she had given so much of it to us, and in the public interest.
It was Vicky who sparked a look at the State’s cervical cancer screening programme, CervicalCheck. Back in 2018, it was suffering from a lack of expertise, poor governance, and even poorer communication with the women of Ireland.
Professor of Public Health Gabriel Scally later said that it was “doomed to fail”.
It’s because of Vicky’s decision to take a High Court case over her misinterpreted smear tests, and her decision not to sign a non-disclosure agreement as part of the €2.5 million settlement, that we have a cervical cancer screening system now that is fit-for-purpose.
She also sparked a discussion on wider issues to do with people’s health: open disclosure, a policy to encourage health professionals to be transparent when things go wrong; the patient being centrally involved in their own healthcare; and the issue of assisted dying.
For women, she also embodied the importance of fighting to be heard even when Goliath-like systems dismiss their concerns – Vicky made sure she wouldn’t be ignored or forgotten, and Irish society is all the better for it.
“I had to use my voice,” Vicky said as she was awarded the Freedom of Limerick in February.
As Donegal poet Denise Blake puts it in a poem she wrote entitled ‘For Vicky‘:
To the questions she posed, to the answers she insisted on, how she knocked away the medical brush-offs, how she refused to be silenced. To the steel of her stare, her superwoman’s courage.
CervicalCheck
Vicky Phelan first became known as a public figure on 25 April 2018, after she settled her High Court case against the US laboratory that had examined her smear tests.
When Vicky was diagnosed with cervical cancer in 2014, an audit was carried out by CervicalCheck of her smears, as is the protocol when a woman who has previously had a smear test receives a cervical cancer diagnosis. (This audit process has been put on hold since 2018.)
Despite this, and against best practice, Phelan was not told of the audit or the result of it until 2017 – a year after her doctor was first informed about it. The audit found that the result was a ‘false negative’ – which meant that abnormalities were present in her earlier smear, despite it being reported to her as negative.
False negatives are one of the downsides of screening, meaning not all false negatives are medically negligent. In Phelan’s case, her lawyers argued that it was medically negligent, and that if this abnormality had been detected in 2011, she would have had a 90% chance of survival. In January 2018, she was given 12 months to live.
“There are no winners here today,” the Limerick mother of two said outside the High Court.
She received €2.5 million in that settlement, but would most likely have received more if she had agreed to sign a non-disclosure agreement even though there was no admission of liability on the part of the lab.
By refusing to do so, Vicky put the CervicalCheck programme under the microscope, and drew people’s attention to over 200 women with cervical cancer who had information about their own health history withheld from them, and who in some cases, had their smear slides misread to a medically-negligent degree.
She told an Oireachtas committee in May 2018 that there was a 15-month period where CervicalCheck and her gynaecologist were arguing over whose responsibility it was to tell her about the audit.
Since then, she has been active in putting pressure on the State to deal with the fallout comprehensively: she has pushed the Government to deal with women’s individual cases in a non-adversarial setting and to provide medical treatment for the women affected by the controversy.
As Phelan herself put it in an opinion piece published in the Irish Independent in November 2020:
Smear tests affect every woman in the country. Do we just let that go? I say no. That is why we, in the 221+ Patient Support Group, have fought for every detail.
These women are not just ‘components’ of the system, or the State. They are you reading this, or your partner, the mother of your children, your sister, your daughter.
I am one of those women. I have a voice.
Far from being weakened by my experience of the system, it has made me stronger and bolder.
Every woman needs a voice that will help them challenge the system. The system will always make mistakes. It’s what happens next that matters.
Huge public support
Vicky Phelan’s campaigns had had significant public support in recent years.
“I think it’s because what she says, she does,” her fellow campaigner Stephen Teap told The Journal earlier this year.
Stephen Teap lost his wife Irene to cervical cancer at the age of 35, months before Vicky’s actions brought the controversy into the public eye.
He became one the high-profile CervicalCheck campaigners, alongside Vicky.
“She’s always talking about people, particularly women, taking control of their own destinies, their own bodies, their own situations,” Teap said.
“Ask the question if you’re unsure about something, particularly when it comes to health. Get yourself checked out. If there’s a decision being made, don’t be afraid to say ‘no’ if it’s not the right one for you.
They’re kind of the messages Vicky has been kind of harping on about, but then what we see is her doing that in real life as well, battling away in her own personal life.
Lorraine Walsh, another high-profile CervicalCheck campaigner, told The Journal that Vicky changed the taboo around discussing this area of women’s health.
Cervical cancer has always been the ‘poor relation’ type of cancer. Vicky Phelan has done a lot of work in bringing that to the fore and making it more understandable to people.
“I remember listening to a man on the radio and he said , ‘God I didn’t even know what smear tests were and now I know’. And he was in his 80s, and I remember thinking at the time, ‘Isn’t it amazing that this man now knows what they are’.”
The Mayor of the City and County of Limerick Daniel Butler said of Vicky as he awarded her the Freedom of Limerick:
“Despite her own health, she continues to face her challenges head on with a drive and determination that has won the love, admiration and respect of the people of Limerick, Ireland and the world.”
Labour leader Alan Kelly, who became a good friend of Vicky’s after bringing her and Stephen Teap on a tour of Leinster House after the controversy first arose, said of her, while addressing the Dáil:
“What Vicky Phelan exposed was how a minority in the medical profession spoke to their patients and looked down on them. That must stop. Patients are entitled to ask questions about their own health.”
Teap, speaking earlier this year, said she had been a beacon for women’s healthcare in particular, and that the message of women being in control of their own bodies was particularly relevant after the Repeal the Eighth movement during the 2018 referendum.
“I think women’s healthcare has been neglected for a very long time in Ireland,” he said.
It’s better to be a man walking into a hospital than a woman, and I think what Vicky has done is she was the catalyst that shone a big spotlight on this.
Vicky started a debate about ‘woman-first’ healthcare, he said.
“I think Vicky has laid some solid foundations for change, particularly with the screening programme – triggering an external review, has brought in some proper staff at senior level to run it, and it is a better programme today than it was prior.”
Her illness
Vicky’s tenacity served her in pursuing answers from authority, and it could be easily forgotten that she was still ill with a terminal diagnosis while she did this.
After initially being told in 2018 that she had 12 months to live, she then went over two years without her cancer progressing.
In November 2020, when Vicky revealed that her cancer had once again progressed, and that there was a new 3mm tumour in her lung, the public’s hearts sank.
“I knew this day would come, and that Pembro would stop keeping all of my tumours at bay,” she said on Twitter of the drug pembrolizumab.
“But I am so very glad that I fought for Pembro. It has given me almost 3 years of a quality of life I could never have hoped for on chemotherapy.”
In January last year, Vicky moved to Maryland in the US to undergo chemotherapy, but returned in October after scans revealed she had two new tumours on her neck, and a “worrying one” on her bowel.
She also spoke of the “relentless” side effects that go with treatment, and the Covid-related travel restrictions that meant she couldn’t see her children or other family members during that time.
"I would rather my children have memories of doing stuff with me and if I go sooner, so be it."
— RTÉ One (@RTEOne) November 19, 2021
The inspiring and ever vibrant Vicky Phelan joins Ryan for a catch up. ❤️ #LateLate @PhelanVicky pic.twitter.com/0sgiSNZNdm
She told RTÉ’s Late Late Show that November:
I’ve been fighting this terminal part of the illness since 2018. This is my fourth line of treatment, most people don’t get to four lines of treatment, they might get to three lines, but when you get to four lines, that means my fourth time of trying something different.
In November 2021 she announced she would stop palliative chemotherapy in order to spend more time with her family, and said she was hoping to make it to Christmas.
“For me it’s the right thing. I know it’s not for everybody, but for me I just think I would rather my children have memories of doing stuff with me, and if I go sooner, so be it.”
Having met that goal, she then set her sights on doing “everything” she could to join former RTÉ broadcaster Charlie Bird on a gruelling hike up Croagh Patrick in April, after he revealed that he was diagnosed with the terminal illness Motor Neurone Disease.
On Valentine’s Day, Vicky began a three-week radiotherapy treatment to help relieve the pain of a tumour that was growing into her spine. She updated the public that she could “go quiet” on social media as she focused on her new treatment.
Posting to Facebook on 14 March, Vicky revealed that she had spent two weeks at a Limerick hospice recovering from complications from her radiotherapy treatment.
She said that as she was only recently able to walk without the assistance, she wouldn’t be taking part in the Croagh Patrick climb, as she wasn’t able for it “physically or mentally”.
“The past few weeks have really knocked the stuffing out of me and I need to focus on just getting well again,” she said.
Speaking on RTÉ Radio just after the CervicalCheck controversy broke in 2018, Vicky said:
I won’t have achieved anything with what I’ve done if I’m not still alive… I want to be alive to see the changes that this will affect going forward. So, you know, it’s another impetus for me to keep fighting, to live, basically… If I have any control over it, my God, I am not going anywhere.
“[Palliative care] is great when it works, but there are times when it doesn’t, when there is a certain amount of suffering that no amount of pain management can get on top of. I don’t want my children to see me like that,” Phelan said at the launch of the Dying with Dignity Bill outside Leinster House in September 2020.
What I am asking is to be given a choice.
‘I don’t want your tributes’
In an opinion piece written in the Independent after the death of fellow CervicalCheck campaigner Ruth Morrissey in July 2020, Vicky wrote:
“I’m also writing as a woman living with a terminal illness, who is under no illusion that, in a few short years, I will also be dead. And I know many of the very same people who spoke about Ruth, after her death, will be paying tribute to me – and promising the earth, moon and stars in my honour.
I am here to tell you now, while I still can, that I don’t want your apologies.
I don’t want your tributes.
I don’t want your aide de camp at my funeral.
I don’t want your accolades or your broken promises.
I want action. I want change. I want accountability. And I want to see it happen while I am still alive, not after I am dead.
A fighter until the very end.
Her call for the Dying with Dignity Bill to be enacted, for a policy of mandatory open disclosure to be enacted, for a National Laboratory to be set up in memory of Ruth Morrissey, and to make the CervicalCheck Tribunal work better for the women affected, is the least the Government can do now to honour her legacy.
Much like the tenacious Vicky Phelan, these causes will not go away easily.
- Additional reporting by Daragh Brophy
To embed this post, copy the code below on your site
have your say