If a test in 2011 had been accurate, Vicky Phelan might have avoided cancer. Now she is trying to give some hope to terminal patients

When Vicky Phelan was told in January 2018 to get her affairs in order because she had less than a year to live, she crumpled. “The legs went from under me,” she recalled.

Emerging from the doctor’s office she avoided the gazes of her daughter and mother waiting outside and sought refuge in a bathroom. “I was in there for about 20 minutes. I bawled my eyes out.”

She composed herself, and then came the anger – not just for the prognosis of terminal cervical cancer but for the medical blunders that preceded it.

“I’ve always been bullheaded and stubborn,” she said. “I thought: I’m not taking this. I’ve got two small kids. You can’t honestly tell me to go home and die. I was so fucking angry.”

Eighteen months later, Phelan, 44, is very much alive and has been celebrated in Ireland for not taking this – not the grim prognosis nor the catalogue of grievous mistakes by medical authorities.

A formidable researcher and campaigner, she successfully fought for access to pembrolizumab, an immunotherapy drug, which has shrunk the tumour and extended her life. The Irish state now offers it to other women with cervical cancer.

Phelan also blew the whistle on a medical scandal: dozens of women with cervical cancer were not told that smear test results had wrongly given them a clean bill of health. Authorities withheld the revised test results for years. The revelations have shocked Ireland.

An inquiry headed by Gabriel Scally, a public health expert, recently published a report detailing how the Health Service Executive (HSE), a state agency, outsourced screening to unapproved laboratories in the UK and US.

There is no evidence the labs were sub-standard but Irish officials failed to keep track of them and had an “inadequate” system for responding to screening errors, the report said. An earlier report by the inquiry excoriated “whole-system failure” and “paternalism” in Irish healthcare.

Facebook Twitter Pinterest Gabriel Scally at the launch of his report on the HSE’s outsourcing of smear tests. Photograph: Niall Carson/PA

The findings have cast a shadow on the country’s progressive sheen. Behind a humming economy and social liberalisation endure old habits of dysfunction, unaccountability and misogyny, according to Scally. Leo Varadkar, the country’s first gay taoiseach, is under fire for his handling of the scandal.

The government last week approved payments of €20,000 (£17,790) each to at least 120 women who were not told their smear tests were audited for errors after they developed cancer. But the state claims agency has appealed a court ruling involving Ruth Morrissey, another woman with terminal cervical cancer who successfully sued the HSE and two laboratories.

For Phelan, an academic administrator who lives in County Limerick, the problems began in 2011 when a smear test failed to detect abnormalities – a false negative. In 2014, worried by bleeding between periods, she went for another test. It detected cancer. She began treatment within weeks.

An internal HSE review discovered the mistake made three years earlier, when treatment might have averted the disease. No one told Phelan until 2017. Then she learned the cancer was incurable.

Phelan sued. In April 2018 she received a settlement of €2.5m (£2.2m) without admission of liability from Clinical Pathology Laboratories, a Texas-based company sub-contracted to assess her test. Her case against the HSE was struck out.

She resisted a gagging order and lifted the lid on the wider debacle. Inaccurate smear test results had been given to at least 208 women later diagnosed with cervical cancer. Most were not told about the revised results. Twenty are now dead.

“We were the last people to be considered in all of this,” said Phelan, speaking to the Guardian from Kilkee, a County Clare village overlooking the Atlantic where she was on holiday with her family.

For documenting incompetence, buck-passing and paternalism in the treatment of women, the Scally inquiry has been called a watershed for Irish healthcare.

“We’re still second-class citizens,” said Phelan. “A lot of these gynaecologists feel like they’re gods and that you can’t question them … that you’ve no right to ask questions about your own body.”

Facebook Twitter Pinterest Vicky Phelan in Kilkee, County Clare. Photograph: Rory Carroll/The Guardian

Change is under way. The HSE is implementing the inquiry’s recommendations. The government has offered free out-of-cycle smear tests, leading to thousands of women being tested for the first time, at the price of creating a huge backlog. The publicity is credited with a surge in teenage girls getting the HPV vaccine that prevents some types of cervical cancer.

Campaigners welcome all this but lament delays in establishing compensation, a tribunal and and independent review of the smear test saga. “Despite over a year of work, the failings we are battling are still being uncovered,” said 221+, a patient support group, last week.

Phelan inhabits a strange limbo. Showered with awards, invited on chatshows, profiled in documentaries, she is Ireland’s version of Erin Brockovich. But her terminal illness still ticks its countdown. Phelan does not know how long the pembrolizumab will tame the tumour.

In September she will publish an autobiography, Overcoming, “the story of my life, one struggle after another,” as she described it.

At 19, Phelan was injured in a car accident that killed her boyfriend. It plunged her into depression. “That was the first thing that happened that made me realise life is not fair.” Her daughter Amelia, now 13, was born with a genetic disorder affecting her eyesight.

If the 2011 smear test result had been accurate, Phelan might have escaped cancer. “I try not to go there too much because if I do I just get very angry. And if I go down that road it spirals into depression,” she said. “I don’t have time on my side. I’d rather just enjoy what I have. I can’t change it. But I can change it for other people.”

Irish people were belatedly learning to stand up for themselves, she said, first challenging the Catholic church and now the medical establishment. “I have people who come up and say: ‘Oh Vicky, you’d be so proud, I asked my doctor a question today.’ I love that.”

Phelan is funding a pilot project to give those diagnosed with terminal cancer a professional advocate, an expert who can advise on options including experimental treatments.

“It’s to give people a little bit of hope that there might be something out there. There isn’t always, I know that. But you can’t just send people home to die without a little bit of hope.”