Vicky Phelan: Whistleblower and outstanding patient advocate

Vicky Phelan began her life in the public eye as a whistleblower and she continued as an outstanding patient advocate over the eight years of living with terminal cancer that followed.

She described herself on social media first and foremost as a “women’s health advocate”, ahead of identifying as someone who was “living with cancer”.

The die was cast in spring 2018 as she was finalising a settlement with the HSE and the US lab that had processed her cervical smear test seven years earlier. That test had shown no abnormalities but on audit in 2014 this result was found to be incorrect.

Ms Phelan had a choice. Lawyers for the lab were prepared to settle with her without admission of liability, but they wanted her to sign a confidentiality agreement.

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She balked. Papers uncovered by her own legal team during the case showed she was not the only woman to have had her original negative smear test reclassified as positive. While she could walk away with a handsome settlement that would pay for her future treatment and support her family after her death, the other women might remain in the dark about their reclassified smear test results.

She made the life-redefining decision to call the lawyers’ bluff, reject the non-disclosure agreement and reveal the existence of the other cases.

“The women of Ireland can no longer put their trust in the CervicalCheck programme,” she declared on the steps of the High Court in April 2018, immediately after settling her case. “Mistakes can and do happen but the conduct of CervicalCheck and the HSE in my case, and the case of at least 10 other women we know about, is unforgivable.”

Within days, the wider extent of the problem emerged. More than 200 women tested between 2008 and 2018 were identified among those for whom a “screening test could have provided a different result or a warning of increased risk or evidence of developing cancer”. Of those 208 women, 162 had not been alerted about earlier audits revealing errors affecting their results.

“I never thought the problem would be of this magnitude,” she commented, speaking on radio days after her court settlement. “I really didn’t think I’d be waking up this morning to this type of news. They fecked with the wrong women.”

These early public comments by Ms Phelan capture her personality – earthy, self-deprecating, concerned for others and utterly determined to get accountability.

She aimed high with her first target. How could HSE director general Tony O’Brien “have the balls to stay in the job at this stage” she wanted to know.

Mr O’Brien stepped down within days, as did CervicalCheck clinical director Dr Gráinne Flannelly. Their departures set a pattern: when Vicky spoke, Ireland – and especially its politicians – listened.

As a university administrator, she found she had the perfect skill-set to achieve accountability; she was as adept at analysing the science behind screening as she was at co-ordinating a national campaign advocating the rights of CervicalCheck women. But she also communicated with tremendous eloquence, never talking down to people, and never shying away from the reality of her situation while shirking mawkish sentimentality.

“You do not want to be in my position – it is not a nice place to be. I have seen women with terminal cervical cancer and it is an awful death,” she said.

Unsurprisingly given her gifts, she quickly joined the small number of Irish people who need only be identified by their first name to be recognised.

She said she wanted “action, not accolades” but got both. There were multiple awards, a best-selling book, a documentary titled Vicky.

As for action, the cervical screening service is better resourced and more woman-centred with more patient representation. Promises to bring back screening from the US to Ireland have yet to be delivered. There is open, but not mandatory, disclosure. Health managers are still not accountable for their actions. Relations between health officials and cervical cancer patients representatives remain troubled. The courts, and not a Government-appointed tribunal, remain the forum chosen by most of the affected women seeking redress.

The original controversy will echo on because there is still no consensus between the screening world and the CervicalCheck women on the extent to which the recategorisation of smears involved negligence.

[ Vicky Phelan changed Irish healthcare completely, says CervicalCheck investigator ]

[ Phelan was a ‘force for truth and honesty’, her solicitor says ]

Vicky Phelan made good use of her settlement to extend her life for much longer than anyone might have thought possible. She took pembrolizumab – a drug licensed for other forms of cancer but not cervical cancer – off licence, initially at her own expense.

As she started to run out of road with her illness, she travelled to the US for experimental cancer treatment in Maryland. Somehow, she gained eight extra years to spend with her family after her initial diagnosis in 2014.

With the passage of time, she was less often in the public eye, though her image lived on in film and on the printed page. She lent her support to the campaign for assisted dying, pleading to be allowed to die “with dignity, on my own terms”.

When Ireland woke up on Monday morning to the news of her death, it was clear she had, once again, achieved her objective.