GAVAN REILLY: Don’t feel sorry for Vicky Phelan’s family. Feel furious instead!

In another, better life we wouldn’t ever have known her name. Vicky Phelan’s smear test in 2011 would have been read correctly; her nascent cervical cancer diagnosed, treatment given, and life would have gone on. Amelia and Darragh would still have their mammy. Ireland would never, as proven by the recent docufilm, have been on first name terms with her.

But her slide was misread, early cancer missed, and after years of anguish and advocacy and experimental medicine, now she is dead.

It goes without saying that Vicky Phelan may be one of the most influential Irish women of this century. It took extraordinary tenacity not to agree to the non-disclosure sought by the HSE in settling her case, which blew the lid on the whole scandal and – who knows – emboldened others not to do so either.

And in the midst of terminal cancer, it would have been easy – nay, totally understandable – to retreat to home life, to care for her children with her remaining time, to shrink away from the public world and live out her finite days in the bosom of those who loved her most.

But she didn’t. She kept going; she took interviews, from me and others; she advocated, she agitated, the accidental ambassador that nobody could ignore. She demolished the culture in which people would talk about a patient without ever treating the patient. And generously, while juggling family obligations with experimental treatment in the United States in the middle of successive lockdowns, she remained at the vanguard of the 221 Plus group, named after the number of women whose cancer may have been avoided had their smear test been read differently.

All the while, as others have written, she remained so humble; persistently amazed at the good nature and generosity shown to her by others who appreciated her guile and gumption, seemingly taken aback by what she meant to so many.

Whatever about the State, she has certainly done her fellow women some service. But no more of that.

And yet, a troubling thought. Was it worth it? Did she achieve what she set out to do? Vicky certainly said the resignation of Tony O’Brien as the head of the HSE, or Grainne Flannelly as the clinical director of the screening service, did not amount to accountability.

In 2020 after the death of Ruth Morrissey – another woman who had to go to court for redress, exactly as the government had said nobody should – she left us with her own yardstick for assessing success. “I don’t want your apologies,” she wrote in the Irish Independent. “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.”

Did she get those things? It may seem crass to say it, while her family and friends are grieving her loss, but: I don’t think she did. Vicky Phelan’s crusade might have changed the culture for people; women might now feel emboldened by her advice to speak up and follow their instinct of something being wrong. When it comes to the State, though, it doesn’t seem much has changed at all.

What was it that Vicky, and Ruth, and Emma Mhic Mhathúna were promised: that nobody would have to go through the courts like them? A separate Tribunal was promised, intended to be ‘non-adversarial’ and to offer quicker restitution to those whose time was running out. Yet when its deadline for new cases closed in July, it had received only 25 cases. By comparison, one single laboratory was named as a defendant in 35 separate High Court actions in 2021 alone. The women and their widowers have voted with their feet: the cold marble of the Four Courts is preferable to what the Government has offered them.

That’s not even the most scandalous bit. To this day, the principle of ‘open disclosure’ – the very idea that someone should be told if there’s been an error, or mistake, or problem with their healthcare – is not the law of the land. Sure, it has become formal HSE policy. But it’s not a stipulation of the law. Vicky Phelan was diagnosed with cancer in 2014; it was not until 2017 that she was even told that her 2011 smear test was a ‘false negative’. What’s more, that was a full year after her doctors were informed; the letter sent to them openly doubted whether open disclosure might apply in her case.

It was that paternalism, that presumption that someone else knows better, that sparked Vicky Phelan’s rage against the machine. Yet four years after her court case, and three years after a State apology from Taoiseach Leo Varadkar who promised never again, it’s still not law. The Patient Safety Bill only cleared the first hurdle before the 2020 general election; it was only revived to go back to committee stage last March, where all sides – including Stephen Donnelly – accepted that its current wording doesn’t quite go far enough to cover all circumstances. Eight months later there’s no timetable for action.

Vicky Phelan said she wanted those things - action, change, accountability - before she was dead. She didn’t get them.

It is a natural, human emotion to feel sorrow and pity for her family and friends on her passing. But it does her memory a disservice to be ruled by the heart. The better response would be to react with the head and feel not pity, but outright disgust that so much of her final years seem to have been in vain.