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29th Jun 2018

How Vicky Phelan changed Ireland – the inside story of a fight for justice

Michael Lanigan

vicky phelan

Whistle blowers don’t sprout from the ether.

They emerge from direct experience with an event or action that challenges their moral compass to the extent that they feel left with no other choice but to speak out.

It’s not a title that anyone is eager to earn either. To become a whistle blower is to believe something is inherently wrong with a system, and by confronting that fact, they have to give up a certain aspect of their life, namely the sense of spontaneity.

That is probably the main deterrent for most. Somebody who exposes a fault cannot expect to resume life as it was prior. The only hope afterwards is that others are as willing to denounce such a practice or way of life, one they were likely comfortable within beforehand.

There is resistance. People aren’t always keen to accept a fact that alters their version of the world. As such, one person’s hero is another’s inconvenience.

Depending on whom you ask Vicky Phelan will fall into one of those categories. If selflessness is a virtue though, she leads by example. Primarily because she surrendered her own life’s spontaneity at a period when she could have been excused for staying down the safer path.

At a time when she was made aware of how limited her lifespan was, she gave up her own privacy, making this personal information public in order to ensure that others could rightfully claim ownership of theirs. She didn’t lunge for heroism. It was a necessary act of selflessness at a necessary moment.

She said it herself outside the Four Courts on 25 April. That was the day her case against the HSE and Texas-based Clinical Pathology Laboratories concluded with the latter agreeing pay her €2.5 million for the incorrect reading of her smear tests, which resulted in a terminal cancer diagnosis:

“There are no winners here today. I am terminally ill and there is no cure for my cancer.

“My settlement will mostly be spent on buying me time and on paying for clinical trials to keep me alive and to allow me to spend more time with my children.”

When we first speak, she’s out of breath having rushed to catch a train that will take her from Dublin to Portlaoise for a Vitamin C transfusion. Fresh from a series of public appearances, including an honorary reception in Kilkenny, her place of birth a few days prior, the 43-year-old Limerick resident jokes , “It’s almost a full time job to be honest.”

“I find this very weird. I’ve had people calling me a hero, but I don’t see that. It was just the right thing to do.”

Her reason for blowing the lid on the Cervical Check scandal was to ensure that her daughter inherits a healthcare system that won’t fail her as it did Vicky. You could interpret it as being part of her will, this urgent desire that the HSE reform and change its policy of voluntary disclosure. With that being the case, it’s not just a will for her children, but a will for the people of Ireland.

Not that Vicky is someone with grandiose political aspirations. She’s adamant on that point. “I was never involved in politics or activism in college. I was sporty, but I’ve always been a principled person. I’d stand up for what I believe in, and I’m stubborn.”

She was the witness to an immoral practice, and combining this principled and stubborn moral attitude, she chose to do the right thing. Granted, she’ll maintain that she didn’t have an option, but she did. That’s why people see her as a hero.

It started on 24 May 2011, the day she went for a routine cervical smear, four months after giving birth to her son, Darragh. No previous abnormalities were noted. The result was negative. That should have been that.

Three years later, she went for another smear test. This time, she was diagnosed with cervical carcinoma. Unsurprisingly, news of this 4cm tumour shocked her. Immediately placing her faith the abilities of her doctor, she switched to autopilot.

“They told me what the treatment was. I did it. No questions asked.”

The treatment lasted five weeks, each comprising five days radiation and one of chemotherapy. Her final three sessions of internal radiation added to this “hell”, “but I did it, because I thought it would cure me.”

And it did. In February 2015, she was cancer-free. Since it had spread to her lymph nodes however, the chance of recurrence was between 70 and 85 percent.

On 27 September 2017, she was called in to see her gynaecologist, Dr. Kevin Hickey for a conversation and a “very vague” one at that, according to Vicky.

“We’ve been told by Cervical Check to contact women who had been included in this audit”, she recalled his saying.

This audit, conducted by the national cervical smear programme found that her original 2011 test had missed the cancer. However, this fact was not made apparent to her, nor did he show Vicky her report. “There was a ‘query’. That was all.”

This audit had commenced in 2010, two years after the Cervical Check programme launched. It followed examples set by other similar free smear programmes in the UK, Norway, Sweden and Finland.

Intending to shed light on why cancers were missed and how to enhance the screening process, this audit reviewed all cases of cervical cancer notified to the programme, of which there were 1,482.

Factored in was each woman’s entire screening history. So, following Vicky’s 2014 diagnosis, her 2011 smear was reviewed and with it, the false negative was noted.

In the summer of 2016, all of the results dating back to 2008 were shared with the relevant treating clinicians. They could then exercise their right to disclose this information on a voluntary basis, using their judgement to assess whether or not the findings might harm the patient.

The details only came to Vicky in drips however. While she considered legal action, then and there she “just parked it.” She was already dealing with enough in her personal life.

Her family was only recovering from another health scare: Amelia, her daughter nearly lost her eyesight due to a congenital disease, which required her to undergo laser surgery.

As some semblance of stability had resumed in the Phelans’ home by September, Vicky was able to compartmentalise news of this audit. In the scheme of things, she didn’t have cancer, but she did have a job interview to prepare for in October.

Then in November, she was told that the cancer had returned. Through December and into January, she underwent various scans and started considering treatment options. It was in January that she was told the cancer was terminal on account of its having spread to her lymph nodes and inoperably to her aorta.

The real “ah-ha” moment came on 19 January, while waiting for a biopsy in a treatment room with her mother. Reading her report, the words “query squamous cell carcinoma” clicked with her.

“Jesus, Mam,” she said. “I actually had full blown cancer in 2011.”

She noticed that the report said page two of two. There was no page one.

Readying herself to take action, Vicky went on lock-down. Whereas in 2014, she took a passenger seat role, this time she took complete charge of her reality. To start, there was the matter of treatment.

Her body had already received the maximum dose of radiation, so she could only be offered palliative chemotherapy as an alternative. That gave her 12 months.

She declined, seeking out a better alternative, which initially cut her time in half. With that risk in mind, Vicky got down to what she does best: intensive research. Right away, she informed herself of any and all relevant clinical trials.

“I was willing to be a guinea pig,” she says. “When you’re in my situation, you’ll do whatever it takes. I was ruthless.”

The first option was a trial in Maryland, USA. It involved genetically altering the patient’s white blood cells to hence fight the cancer. Intake was limited and costly, so she set up a crowdfunded $100,000 and went on the Ray D’Arcy Show to raise awareness for this campaign.

Deemed ineligible, next she turned to an immunotherapy drug called Pembrolizumab, which also used the immune system to attack the cancer. Only a few trials of this antibody had been carried out, and again, the intake was small. In one instance, only seven people were admitted, but two had full remissions, while another person extended their time-frame.

From a symbolic point of view, it made sense that she would opt for the treatment that weaponised her own immune system. Practically speaking though, the side effects were better than those of chemotherapy.

Daily she hounded TDs, her solicitors, St Vincent’s Hospital, anyone either side of the Atlantic who could get her on that list. As the months progressed however, her condition was deteriorating and before the green light came in April, she admits to being genuinely worried that it might not work out.

Concurrently, she was preparing for her suit against the HSE and CPL, having approached Cian O’Carroll, a Tipperary-based solicitor to take her case. Their initial hunt was for that missing cover letter to complete the audit report. Why was it missing? Who was it addressed to?

When Cervical Check followed through on her request, Vicky found that the letter was sent to her gynaecologist, Dr Kevin Hickey. He had known of her cancer for 15 months.

Dr Hickey and Cervical Check’s clinical director, Dr Grainne Flannelly had engaged in a private exchange as far back as July 2016 at which time he said it was “inappropriate” for him to share with the women the findings from the audit.

Dr Flannelly followed this up on 5 August 2016 by stating that the clinicians ought to use their own judgement over each individual case of disclosure. Dr. Hickey however, disagreed with her, saying the screening service should take responsibility and decide themselves whether the information should be given to the patients.

This disagreement continued into the following summer, when on 20 June 2017, Hickey contacted Flannelly in relation to a group of women whose original smear reports had been altered during the review. He observed furthermore that Flannelly had suggested that the findings be filed away in the patients’ notes.

On 7 July, she observed that, in the context of disclosing these findings “the possibility of resultant harm is crucial.”

Later telling her that he took it upon himself to inform those affected, Dr Hickey wrote to Dr Flannelly on 22 August to say he disagreed with the programme’s choice to “off-load” the responsibility and communication duties to the treating clinicians.

Vicky acknowledged how it was not right that Dr. Hickey be expected to act as the messenger here saying, “I got that. I did see the dilemma for him.”

Nevertheless, from her perspective, being a person with a high risk of recurrence, this information should have been rightfully hers the moment it became known.

Signs of a wider issue surfaced when another set of documents, including all emails referencing her, mentioned a further fourteen women. They were nameless screening and ID numbers.

Her own dilemma came at a mediation hearing ten days before the case commenced. The defence wanted to settle the matter, requesting Vicky sign a non-disclosure agreement. That would effectively lock her into this groove of non-transparency.

Asking O’Carroll if there was any way to guarantee that the other women would be contacted subsequently, he said that wasn’t how this worked.

She decided not to settle on those terms, and as such O’Carroll said there was no point in asking about how much money she would be offered.

“They will think you’re after the money,” he said, as she recalls.

Proceedings commenced on 19 April. A second offer was made that day. The non-disclosure clause still included. Again, she refused.

“It wasn’t about the money at that stage. It was making sure of what other women had.”

Her legal team made the case that, had the cancerous cells been detected during the original smear test, she would have had a 90 percent chance of survival.

Her expert witness, a retired consultant gynaecological oncologist told the court that upon reviewing her case that the delays were unusual and that her clinical professionals had avoided fulfilling an ethical duty to inform their patient.

He started to tear shreds off the HSE and the programme. They were running for the hills. That was when they made the offer of 2.5 million plus no non-disclosure. 

“To be honest, I would have continued, but Cian said this was a good offer and that we could go to the press and get this out in the open.” 

Reflecting on the outcome, Cian O’Carroll explained why in this case, the HSE did not admit liability, saying Vicky’s focus was on non-disclosure. Once that was pushed aside, their negotiations focussed on the financial terms. 

“They would make the settlement without admission of liability. That’s common. We didn’t have a difficulty on that, or advise our client that she should object.” 

This lack of an admission “wouldn’t take from the totality of her victory.” 

On the morning of Wednesday, 25 April, the settlement was reached. Her case against the HSE was struck out and CPL would make the payment. 

Standing on the court steps, accompanied by her husband Jim, Vicky told reporters: “The women of Ireland can no longer put their trust in the Cervical Check programme. 

“Mistakes can and do happen, but the conduct of Cervical Check and the HSE in my case, and in the case of at least 10 other women who we know about is unforgivable.” 

Calling it an “appalling breach of trust” that she was forced to enter the courts as a means of obtaining her information; she called for an inquest into the programme. 

With that, the fall-out began. 

Starting on 26 April, Minister for Health, Simon Harris, insisted that he would be writing to the doctors of the affected women to ensure the results of the audit were properly disclosed. Thereafter, he met with HSE director general Tony O’Brien to arrange an international peer review of the programme. 

On 27 April, the HSE revealed a review was warranted in 442 cases of the 1,482. Of those cases, 206 cytology reviews suggested “a different result that would have recommended an investigation to occur at an earlier stage.” 

The following day, the HSE Serious Management Team was established to investigate the cases and oversee the process of disclosure, but when asked whether he had any confidence in the programme’s management, Minister Harris couldn’t say that he did. 

That evening, Dr Flannelly announced her resignation from the programme with immediate effect. Calls for Tony O’Brien to stand down followed and gained momentum until he eventually stood down on 10 May. 

On Sunday, 29 April, the first reports surfaced that several of the 206 women had since died, with the number being confirmed as 17 on Monday, while the number of recommended earlier interventions rose to 208. 

Vicky’s discovery was a damning revelation that came as the impending referendum on the 8th Amendment had already called into question the state of Ireland’s healthcare system for women. Adding to that glut was a storm, consisting of continuous breaking news, op-eds and political statements, which merged to create a narrative that was English only in theory. 

Down in Ringaskiddy, Co Cork, Stephen Teap had been trying to ignore the unfolding story until late Sunday as the first reports of death started to appear. 

He was still only properly adjusting to the passing of his wife, Irene on 26 July 2017, while supporting his two sons, one of whom was entering crèche, while the other was starting Junior Infants. 

“One moment you’re on the road to recovering,” he said, reflecting on those initial days. “Then, you’re dragged back and going through it all over again.” 

Irene was a HSE clerical administrator whose cause of death had been cervical cancer. She was diagnosis with Stage 2B in September of 2015, five months after having given birth to their second son. The discovery came once doctors could finally make sense as to why she had continued bleeding for twenty weeks following childbirth. 

Her initial treatment lasted eight weeks; five days of radiotherapy, one of chemo and Brachytherapy during the last week. In February 2o16, the results of her scan came back saying everything had gone to plan. 

Things went “downhill” that October when she was re-diagnosed with liver and lung cancer. 

Once he tuned in to the news, the parallels were immediately spotted. 

“I remember thinking, ‘God, Irene…’ She had smear tests, regular ones. She had cervical cancer. She’s dead. She could easily be one of the 17.” 

On the Monday, he learned each woman or the families of the deceased would be contacted in the coming days. At about 2.30pm on the Tuesday, while in work, his own phone rang. 

He recognised the HSE number. The voice on the other end was that of a non-clinical businessperson from Cork University Hospital. They said that Irene’s name had appeared in the most recent audit. 

“Was she one of the 17?” 

“Yes, she is,” they replied. 

While he had mentally prepared for the call, once it actually came he found himself physically shaking and barely able to talk. 

“Look, I can’t even continue this conversation. We need a face to face,” he said. 

Stephen was told to meet with Irene’s consultant at 7.30pm on Thursday night. He wasn’t certain if there would be any lawyers present. Purely for the sake of receiving advice he contacted a solicitor and requested access to all of Irene’s medical files. 

The next day, he saw Irene’s GP. 

“I’ve been thinking about you all week. Have you got a call?” 

It made him realise that her GP was completely out of the loop too. 

When Stephen went to meet the consultant on Thursday, he saw Irene’s original file. In it, there was the audit dated 3 July 2017. Irene had already been hospitalised by that stage, before getting her terminal diagnosis on the 14th. 

 “The file was sitting in our company all that time,” Stephen said. “The audit was in there. Nobody told Irene or me. They made the decision to withhold the information that such an audit had existed.” 

Irene had gone for two smear tests; one in 2010, the other in 2013. Both were originally negative, and in both instances, they were later concluded as false ones. The 2010 test was upgraded to pre-cancerous cells. The 2013 test showed the early stages of cancer. 

“There were two missed opportunities to save her life. If either had been read properly, she’d be here today and probably able to have more kids. Her fertility was taken away from her. 

“We were going to have a very, very normal life.”

Once Stephen got home that night, he updated Irene’s GP, who clearly had not been informed of this. 

At that moment, he decided there were two options in front of him: Do nothing or do something. “What the hell am I gonna do when, in 10 years, my boys are asking about their mother, reading the papers of this audit, saying, ‘what the hell did you do?’” 

He reached out to Justine McCarthy of the Sunday Times, offering her an exclusive on one condition: 

“If you want this story, you have to call down to my house, because I’m opening the doors and sharing exactly all that is left behind in the wake of the scandals: children with no mothers.” 

The day before the story broke Stephen also invited the Tanaiste, Simon Coveney to visit his house too. Again, he said that he wanted the minister to see the very real consequences of these mistakes. It was his way of calling for the necessary support services to be set up for each the victim or their surviving families. 

After going public, he decided to reach out to Vicky Phelan. 

As it turned out, the pair had a mutual friend in Cork, who passed Vicky’s number along once she learned that Stephen was keen to get in contact. 

Right away, the two hit it off, talking on the phone almost daily. 

Their first meeting was to take place on 16 May, the day both were to appear before the Public Accounts Committee in Dublin. 

“I don’t want the first time we are going to meet to be in front of a bloody committee,” Vicky told him in the days prior. 

“Can we work to organise a train up together, just so we can spend a couple of hours getting to know each other?” 

They were meeting at a strange, particularly harrowing moment in the other’s life, bonding over an unjust, mutual tragedy. It wasn’t the result of pure chance or luck, because again, the notion of any spontaneity was shattered well in advance. Their friendship was the next step along this chain of cause and effect, one of the vital emphatic connections to emerge from a life altering series of revelations. 

Vicky speculates that she might share a certain level of Irene’s strength and “feistiness”. Whatever is the case, they talk regularly, almost daily on the phone, acting as a form of support during the other’s ongoing crisis. Really, that is vital, because at its core, communication was at the centre of the Cervical Check scandal; the absence of it and the necessary ad hoc networks created as a result. 

It’s something Stephen has been keen to stress in particular as he reflects on the turmoil experienced by other such similar victims. Both he and Irene persistently push the HSE to reach out to each woman in order to offer them any possible means or advice and support. 

People such as Stephen and Vicky became two of the most public faces of the controversy’s pain and anguish, and by becoming those figures they were able to take some form of control over their situations. He’s as concerned that there remain a significant number of people far more isolated, whose access to their own information is still highly limited. 

Finding a network of similarly affected people or going public, Stephen says are among the few options available to ensure a greater, more transparent solution comes of this. In one of our first conversations, he was keen to stress that the moment the Cervical Check story disappears from the media and public’s psyche is the moment those impacted are sent back into the dark. 

Even after giving a stream of interviews, continuously sharing his unfolding story seemed the only means of actually acquiring Irene’s medical files. He only received those six weeks after the story first broke, seemingly as a result of a Twitter rant, which criticised the programme for persistent stonewalling as he sought to build his case. 

Once he started posting his grievances, a programme representative was on to his solicitor with this information: “So, I seem to have to go to the media to get my files progressed, which is fine for me. 

“But what about the women in the middle of nowhere, who can’t get their information? All she’s listening to are promises.” 

Similarly, this problem was vouched for by Caoimhe Haughey, a solicitor representing several victims and their families, who felt no other choice but to go on Joe Duffy’s LiveLine to just figure out whether one client was included in Dr. Gabriel Scally’s scoping inquiry. 

Of course, the information that she required desperately arrived not long afterwards, with her telling me, “The bottom line here is that unless you literally shout, roar and bang your first on the table, you’re not going to get anywhere.” 

To borrow a quote from Joe Strummer, who said when facing up to an authority, “you either became a power or you were crushed”, similarly you either become an inconvenience or you are overlooked. Inconveniences are necessary and often, they are acting for the sake of some wider benefit. 

Stephen Teap is an inconvenience. Vicky Phelan is definitely one heck of an inconvenience. Like the Repeal movement before them, which was inconvenient in how it demanded a choice over one’s body, they lead what is the next charge, the charge to exert control over one’s information and how it affects the body. 

In Vicky’s case, the act of becoming an inconvenience in her rightful fight to demand control over her information and body, the results have already stood to her benefit. When we talk in late June, she has been told that there was noticeable shrinkage in the size of her tumour. 

Her business in her day-to-day routine is noticeable, but she sounds upbeat. “I feel normal again,” she she told me in the days following that news. “We’re down in West Clare doing a big job on a house we just got. The place is a bombsite though.

“It’s by the beach and Trump’s place in Doonbeg, and I’m walking that beach – the whole length of it – up and back. There’s no way in hell I’d have been able to do that two or three months ago.” 

Sure, it’s a small victory, but it’s one all the same and she was able to secure that victory by being inconvenient; a stubborn, but vital inconvenience to the system.