Edel Coffey: How I approach my reproductive health has changed because of Vicky Phelan

Edel Coffey. Picture: Ray Ryan

“Mná na hÉireann: this fight was for you.”

What a legacy Vicky Phelan has left. In 2018, Vicky settled a high court action against the American company Clinical Pathology Laboratories Inc, Austin, Texas, who had misread her CervicalCheck smear test of seven years previous, leading ultimately to her terminal diagnosis of cervical cancer. She died on Monday at the age of 48, a heroine and a crusader for truth and change in the Irish healthcare system particularly relating to women’s health. Her words about action, change, and accountability are amongst the most moving I have ever heard, from any orator, political or civilian, past or present, historical or contemporary.

It’s hard to fathom how Vicky Phelan’s family might begin to come to terms with a loss as great as theirs. Not only have they lost one of their dearest, most intimate loved ones — a wife and mother, daughter and sister — but also someone who accidentally became a towering and formidable public campaigner, a shining light of hope for many women who found themselves in a similar situation to her, and someone who effected enormous change both culturally and literally through the force of her passion, her belief in truth and justice, and her inspiring personality.

Vicky’s attitude inspired the entire nation. When most people would have been completely within their rights to turn away from the broken system that had failed them and enjoy what time they had left with their loved ones, Vicky Phelan turned her attention and energies towards changing and improving the system and making sure what happened to her never happened again.

Vicky worked tirelessly to campaign for patient information to be automatically given to patients. Her campaigning led to the Scally report into the CervicalCheck scandal, which revealed a broken, paternalistic system that didn’t believe women had any need or right to share information relating directly to them and their bodies.

Vicky’s case began with a smear test in 2011, which showed no abnormalities. But it was later discovered in a 2014 audit of her smear test, the same year Vicky was diagnosed with cervical cancer, that the 2011 reading had been incorrect. Vicky Phelan was never told of this finding and only discovered it by accident on flicking through her patient file in 2017. A key part of her settlement with the High Court in 2018 was her refusal to be silenced. She was brave and stuck to her principals in refusing to sign a confidentiality clause, which meant that she was free to expose the controversy that had led to her illness, was able to shine a light on it for others, and lead change in the hope that what had happened to her would not happen to others.

Her astonishing campaigning brought so much positive change, from her efforts to make the drug Pembrolizumab available to other women to the Scally report into the scandal to the state apology she received from Leo Varadkar in 2019, who was taoiseach at the time.

Her friend and fellow CervicalCheck campaigner Stephen Teap described her on RTÉ radio on Tuesday morning as ‘a warrior with the gentlest of souls’. It has been said so many times before that this sort of campaigning work should not be left up to victims, to people who are ill and suffering, to people who are vulnerable or whose lives are curtailed. And yet so many times in Ireland, the cultural change we need or the institutional change we need or the systemic change we need has only come about at the cost of people like Vicky Phelan.

Vicky wanted to ensure that something like this would never happen again to any woman, man, or child in this country and she always included men and children in her campaigning because she was keenly aware as a wife, and a mother of two, that when women die from cervical cancer, they often leave husbands without wives and children without mothers.

She stood up for the women of Ireland and many of us today definitely owe our lives to her. How I approach my reproductive health, my smear tests and related procedures, has changed because of Vicky Phelan. I take it seriously, I follow up, I ask questions, I take action. Thanks to her.

As I read about Vicky Phelan’s life this week and everything she has achieved to make things better for us, her words about action, change and accountability kept coming back to me. If we keep those words in our hearts, we will never go far wrong.

Vicky knew how easy it is to pay lip service. How easy it is to offer platitudes but not solutions. How easy it is to send an envoy or aide de camp to a funeral. The more difficult challenge is to learn from our mistakes, to implement protocols. Action, change — and accountability.