Twenty women caught up in the controversy over the CervicalCheck cancer screening programme have so far died. Some of them have become well-known, notably Emma Mhic Mhathúna, whose heartbreaking interviews broke the collective heart of a nation earlier this year.
Thousands attended Emma’s funeral service last month. Flags were flown at half-mast as a nation mourned the death of one of the most prominent victims of the controversy.
Most, though, have remained nameless, faceless victims of a needless tragedy to the wider public.
One of these women is Julie O'Reilly, who last month became the 19th of the CervicalCheck women to die. Her husband, Tony, anxious to seek justice on her behalf, has spoken to The Irish Times about his wife of 42 years. He wants to honour Julie's name by putting it in the public realm. This is her – their – story.
Julie, a 60-year-old mother of four adult children, died on October 6th of complications of cancer, 18 months after being diagnosed with the disease and five years after receiving the last of a series of cervical smear tests that were recorded as normal.
Julie, who died just a day earlier than Emma Mhic Mhathúna, was cremated in a private ceremony in Swords in the presence of 12 family members, and her ashes were then buried in a family plot in her native Isle of Man.
Tony, sitting in a Dublin cafe this week almost exactly a month after her death, has questions, lots of them, but few answers.
“Julie just got on with things. But she said to me once, ‘What if we hadn’t made the decision to come back to Ireland in 2007 – would things have been different?’ This is what we asked ourselves: ‘What if we’d been seen by people in a different country?’ ”
How could so many people “be so wrong or make so many mistakes?” his wife asked him as her condition deteriorated. “It seemed to be just one thing after another. It wasn’t just one thing; it was an awful lot of bad things that seem to have gone wrong in the system, and she was in the middle of the whole lot.”
Tony is confused, angry, even vengeful. He can’t bring himself to open her medical records with their dry recounting of symptoms and tests and appointments and more tests. He isn’t used to telling people about Julie’s cancer, let alone her being one of the 221-plus women caught up in the cervical-screening affair.
“I’m still shell-shocked. I’m looking for someone to blame but where do I start and where do I finish? When I look back at this, who was accountable back then?”
Julie was in secretarial college on the Isle of Man when she met Tony, whose family had moved there from Dublin in 1972. They were both 16 and he was studying catering.
They married within two years and had four children, now aged 22-42. After a decade on the island, they moved to London, where Tony got a job teaching and Julie worked in administration before becoming a full-time mother. They travelled for a while with his job, working and living in Spain and Germany, before making the decision to move to Ireland.
“I had high blood pressure,” Tony recalls. “Julie said, ‘I’d rather you be ill in your own country than ill in a foreign country. The idea was also to be near the grandchildren, as our daughter Kelly was living here.”
They were a tight couple: Tony wrote food textbooks and Julie edited them, along with all the family duties. “Julie was very family-oriented. She lived for the kids,” he says, struggling with his emotions as he tries to synopsise a life-long partnership.
At first the move back to Ireland went well. “We were living in Portlaoise, around the corner from our daughter, and Julie would help mind the grandkids.”
She had problems with vaginal bleeding but didn’t worry too much about this, given that her repeat smears showed no abnormalities. “We put it down to being post-menopausal and getting older and feeling tired. There was the bleeding but they were giving her medication to control that, so it was okay for a while.
“We put our trust in the HSE and the system and hoped that they’d look after us.”
Another daughter – Lisa, who lived in England – had developed breast cancer, and the family thought Julie might be tired out from the trips she made every three weeks to be beside Lisa during her treatment. “All this travel was going to take its toll, we reasoned.”
Things changed for the worse in February 2017, when Julie’s cancer was diagnosed – this was 3½ years after the last normal smear.
“We’d been on holidays, and she had this lump on her leg when she went to the GP. I remember looking at my watch at the time because I’d parked the car outside. I was hoping to get back before the meter was up. As I did, Julie stepped out of the surgery and she was crying. She just sat there and said, ‘The doctor says there’s a problem.’ ”
She was referred immediately to a specialist, who diagnosed cancer.
Julie underwent a series of tests, and treatment started in April 2017. Surgery was ruled out, as the cancer had spread around her body, so she began chemotherapy.
“We’d go up to Dublin in the morning, starting off at 6.30 in the morning to beat the traffic. We were there from eight in the morning till six in the evening. We just got on with it.”
Successive cycles of chemo took their toll, and Julie grew tired and weak. At first she needed crutches, then by April a wheelchair, as the strength left her body. Radiotherapy treatment followed. She got a wig and was hospitalised several times.
Julie made it to her daughter Lisa’s wedding in September 2017, but it wasn’t easy. “She wanted to stand for the photos, so we had to take the wheelchair out of the way while she leaned on someone, then quickly take the photo before putting it back in place.”
She suffered an embolism the day after her daughter Lisa underwent breast reconstruction (post-breast cancer surgery) in London. “It was a double blow,” Tony recalls. “I remember Lisa, the day after her operation, getting in the car in England, then being driven by her husband, Jon, from London over to Ireland, to be beside her sick mother.” Lisa has since got the all-clear.
Then, in April 2018, Vicky Phelan detonated the cervical cancer scandal. After settling her High Court case against a testing lab, Phelan revealed that many other women were affected. Tony and Julie were slow to make the connection.
“We saw Vicky on the telly and we didn’t think anything of it then. We didn’t know.”
Tony started to reflect, though, as the controversy raged and the number of women caught up in it grew. “There was something at the back of my head. I wondered, but Julie didn’t want to speak about it. She hadn’t told a lot of friends she had cancer. Despite being from the Isle of Man, she liked to use Irish phrases like ‘I’m grand’.”
Smear test audit
One day last June, the call came from the HSE. “We thought it was to do with her treatment. They called us in to Holles Street, where they explained about the audit they’d done. When Julie came out she was very upset, but just wanted to try to get through it.”
The review of her slides, carried out after she was diagnosed with cancer, showed that, far from being normal, four of her tests showed a high-grade abnormality.
In July a liaison officer visited the O’Reillys and delivered an apology on behalf of the State over Julie’s care.
The couple found solace and support from the other survivors of the controversy. “I remember Vicky coming up to see Julie in St Vincent’s when they were there on the same day,” Tony says. “I walked out of the room and left them to chat.”
They demanded and were given access to pembrolizumab, a new drug that had reduced Vicky Phelan’s tumours, but Julie wasn’t suited to it and her health continued to decline.
They maintained their anonymity. "Julie didn't want the spotlight on her. She was living and she wanted something done. She saw the Ruth Morrissey case [against the HSE and her testing lab in the courts], and she saw how Ruth had been treated and said, 'I can't go through that'."
She was hospitalised in August after suffering the clot in her lung and never came out again.
Tony remains at a loss. “I was always the Mr Fixit, the man with the right spanner for the job, but what do you do with a problem that can’t be fixed?”
He has questions, too, about how someone with his wife’s symptoms could have ended up dying of cancer.
Julie was called for a regular screening under the CervicalCheck programme in January 2009, which found evidence of abnormal cell growth (atypical glandular cells). This is a low- to medium-grade finding that requires the patient to be tested again soon, usually within six months.
In fact, as the later audit found, the slide showed evidence of high-grade squamous intraepithelial lesion (HSIL), a more serious indicator of pre-cancer.
“Had that slide been correctly read, Julie would have been sent for immediate colposcopy (examination of the cervix) and treatment of pre-cancer,” says Cian O’Carroll, the solicitor engaged by the O’Reilly family.
Due to the issue raised in the first smear, she was recalled for another test in May 2009, and no abnormality was detected. A further test was conducted in November that year, and again, no abnormality was detected. In October 2010, another test produced another normal result.
Yet on review, all three slides were found to show evidence of HSIL, just as with the first slide.
Cancer screening is not an exact science. About four out of every 1,000 tests will produce a false negative, meaning the disease is there but has not been spotted. Not all of these “misses” will be the result of misreading or negligence. It is also entirely possible for a woman to develop cancer in the interval between two tests.
Her last test, in September 2013, came back as normal, both initially and on review.
O’Carroll, who notes a similar pattern in Emma Mhic Mhathúna’s case, believes the slide was read correctly but suggests the taking of the smear failed to pick up the abnormality present.
“As a consequence of these missed opportunities, at the time of her diagnosis Julie not only had cancer in her cervix but she also had significant tumours on her leg. The opportunity for a cure was lost,” argues O’Carroll.
Sentenced to death
In Tony’s view, his wife was “sentenced to death”. “Her fate had been determined years earlier” when the cervical screening programme was being designed.
“The people I blame are the previous administrations who made the decisions when this happened, when the tenders were going out and the contracts were signed for the CervicalCheck programme.
“They’re the ones who decided on the companies to use and the price that was set. I’d love to have answers from that point of view. What happened there?
“My wife might be here if they had picked up something back in 2009 and followed it through.”
Tony’s anger is compounded by what he feels were failings in the care provided for his wife, separate from those relating to the screening programme. There were delays in being seen, despite her symptoms, he says, as well as examples of insensitivity.
Julie had already begun her chemo at St Vincent’s Hospital before an appointment came through to see the doctor in Beaumont Hospital, he points out.
After she died Tony was driving home when a doctor rang asking if he wanted an autopsy to be performed. “I hadn’t even got home. I couldn’t believe the insensitivity of the doctor ringing so soon. I want to start grieving. That decision could have waited till Monday.”
He has met Dr Gabriel Scally, the Northern Irish public health doctor who carried out the scoping inquiry into the controversy, and says he is a "very honorable man".
However, Dr Scally’s report has not answered his questions and “there’s more work to be done”.
Tony says he wants to know more about the outsourcing of Irish cervical smears to overseas labs – something Dr Scally is still investigating – as well as the training provided to the staff involved.
Were these staff properly trained, and was the work done too cheaply, he wants to know.
Asked how he is coping, he replies: “I’m not, really.” He has taken a break from work and moved in with his daughter. He hasn’t consented to Julie’s slides being re-examined for a further review aimed at establishing where negligence occurred, saying he has lost trust in the system.
Julie’s ashes were buried in her grandmother’s grave in the Isle of Man under a bouquet of red roses. “You shined like a diamond and gleamed like gold / And your hand was always warm to hold,” her daughter Gaby recounted in a poem she wrote for the memorial service. “Heaven has opened its doors for a perfect angel to walk through.”
Six months after the CervicalCheck controversy erupted – with Vicky Phelan’s settlement of her High Court case against a testing lab for €2.5 million – the exact impact on the health of other affected women remains unclear.
All that we can say with certainty is that the number of CervicalCheck women will continue to grow, and that more of these women will die.
The HSE has so far bracketed 221 women as being affected by the controversy, but this group is generally referred to as being “221-plus” in recognition that more names will be added to it in time.
The HSE carried out an audit of women who had been diagnosed with cervical cancer. This happened after their cancer was diagnosed. Most of the women were not told about the audit until the controversy erupted this year.
In the case of the 221-plus women, it was found that they could have got a different result from their screening result at the time of the smear test.
The HSE has admitted there was a communication breakdown in relation to relaying the results of the audit to affected women. There is less clarity on the impact of these “discordant” test results on the health of the women.
The case of Emma Mhic Mhathúna, who died last month after her slides were misread, shows that in some instances the health consequences for affected women were severe, indeed fatal.
However, in other cases the change in categorisation of slides may not have made a difference to treatment or outcomes for the women involved.
A further review has been ordered to shed light on this issue, but many women have refused to give consent for their slides to be re-examined for this exercise and are pursuing legal claims instead.
The State Claims Agency says it was dealing with 85 claims relating to CervicalCheck in October, up from 49 in July.
The 221-plus CervicalCheck Patient Support Group can be contacted as the 221plus.ie website or email firstname.lastname@example.org