Updated 8pm
VICKY PHELAN HAS said that she doesn’t want her death to be in vain.
Vicky, who has terminal cancer, and Stephen Teap, whose wife Irene was one of the 18 women affected by the CervicalCheck controversy to have died, addressed the Public Accounts Committee (PAC) this evening.
The scandal came into the public eye last month when Vicky settled a High Court action against the HSE and Clinical Pathology Laboratories (CPL) for €2.5 million over incorrect smear test results from 2011.
Earlier this week the HSE confirmed that 18 women affected by the controversy have died. The smear tests of 209 women could have been incorrect, a HSE audit found.
Questions have been raised about why many women were not told about the audit. There are also concerns about the consistency of results from the labs where the tests were examined. Smear tests are believed to be about 70% effective in terms of detecting cancer and precancerous cells.
Health Minister Simon Harris has launched an inquiry into the controversy, and the HSE’s Director General Tony O’Brien stepped down last week.
In powerful testimony, Vicky and Stephen discussed the impact the situation has had on them and their families.
Vicky told the committee she “never missed a smear” and had undergone the tests since she old enough – even before the CervicalCheck screening programme was rolled out in 2008.
She had a smear test about eight weeks after her son Darragh was born in 2011. The results of this smear incorrectly came back as normal.
Vicky said she requested a smear test a few months earlier than she was due one in 2014 as she experienced irregular bleeding for three months. She said her symptoms were “very minor” – describing this as “something women need to know”.
In July 2014, her GP informed her that there were “very, very high-grade changes” in her cervix and arranged for an urgent colposcopy.
She said the doctor who performed this procedure asked her if she was finished having children, to which she said she was. She was 39 years old at this stage and had two young children – a son and daughter.
She said the doctor recommend that she should have a hysterectomy.
“At that stage alarm bells were ringing and I thought, ‘Jesus, is it cancer?’,” Vicky recalled.
‘Five weeks of hell’
A biopsy confirmed that she had cancer, and an MRI scan showed that it had spread to her lymph nodes and surgery was no longer an option.
Vicky started radiotherapy and chemotherapy, describing this as “five weeks of hell”.
In February 2015, an MRI scan showed there was “no evidence of disease”. However, Vicky said said “consistently complained of back pain” after this but “nobody really took much notice”.
In September 2017, her doctor told her that her smear test results had been reviewed as part of a HSE audit, describing it as “a routine thing”. He told her there was a “query” in relation to her smear in May 2011, but never said she had cancer at that point.
A scan last November showed that her cancer was back. She said it is now touching her kidneys, lung and liver.
Vicky said, through reading her own patient file while in a waiting room this January, she found out that she did indeed have cancer in 2011.
Either the person looking at the test was incompetent or it wasn’t looked at at all. It was full of cancer, not a little bit.
Vicky said there was a 15-month period where CervicalCheck and her gynaecologist were arguing over whose responsibility it was to tell her about the audit.
“You tell her, no you tell her,” she stated.
She said, while going through her legal battle and trying to find treatment options that will prolong her life, her family has also been dealing with the fact her daughter has a toxoplasmosis – a congenital disorder that recently flared up again.
Her daughter is blind in one eye and has 70% vision in the other. She is on medication and “nearly lost her eyesight last summer”.
I’m not interested in revenge, that’s not what I’m here for, I do want accountability.
Vicky added that she wants the legacy of this situation to be that “this will not happen to any man, woman or child again”.
“If I do die, I want it to be not in vain … I want people to be held accountable so that this will not happen again in any shape or form.”
Without a wife and mother
Stephen’s wife Irene died last July at the age of 35. Two smear tests, done in 2010 and 2013, incorrectly came back as normal.
Stephen said he received a call from a non-clinical adviser in the HSE on 1 May informing him that Irene was one of the women affected by the audit who died.
He said he was told that non-clinical advisers made the phone calls to him and others as the HSE “didn’t want us asking any questions over the phone”.
While waiting to meet a consultant two days later, Stephen said he and Irene’s parents wondered if other people in the room had also been affected by the audited.
He said a young woman in the waiting room was very upset and he wondered if he had been “brought in with all of the other victims of this audit”. He said he thought this was “surely not” the case as it would have been “insensitive”.
He asked the woman’s parents if they were there for the same reason he was. They told them they were indeed there because of the audit.
When he told them his wife was one of the women who had died, he said the young woman was so upset she left the waiting room.
He said if Irene’s smear test results were read correctly in 2010 or 2013, she likely would still be alive. Now he is without a wife and their two young sons are without a mother, he said.
Irene was finally diagnosed with cancer in 2015 after she bled for months after giving birth to her youngest son, Noah. She was initially told the bleeding was normal after childbirth and that she may have had a hormonal imbalance.
‘A huge concern’
Stephen recalled how Irene underwent “gruelling treatment ” but that she stayed strong.
They were “delighted” when the treatment worked but Irene’s cancer later returned – it had spread to her liver and lungs.
It got so bad that she was getting up in the middle of the night to take pain medication … They never said this was terminal, they just said we’d be living with cancer.
Treatment initially appeared to be working but last July doctors told them there was nothing more they could do, and that Irene would likely die before the end of the summer.
Stephen said Irene’s goal was to live to see their eldest son start school. She died a week and a half later, on 26 July.
He said, at the meeting with the consultant on 3 May, he was told a decision was made to not tell Irene about what the audit uncovered as “they thought that she was a bit too sick”.
Stephen said Irene “would have wanted to know” the truth, whether she found out three weeks or three minutes before she died.
He said the consultant called him the following day to inform him that he unintentionally misled him at the meeting. Stephen said the doctor told him that he wasn’t in fact told not to tell Irene about the audit, rather that he should contact CervicalCheck about the situation.
Stephen said the doctor was “clearly reminded of the company line” at some point in the previous 12 hours. Stephen said he asked what happened when the doctor contacted CervicalCheck, to which he said the doctor told him he wasn’t sure and would have to go back through 2,000 to 3,000 emails to find out.
When Stephen said he should do that, he said the doctor told him it actually may have been a verbal communication.
Stephen said he’ll probably never find out exactly what happened, adding that the “lack of open disclosure” and communication problems between the HSE, doctors and the Department of Health is “clearly an issue”.
He accused senior figures of “deliberately covering up information” and said they should step aside while the inquiry into the controversy is carried out.
“That is a very huge concern of mine – that they still are in their roles.”
Stephen said the measures of support announced last week for people affected by the controversy were a welcome move, but that he has not been offered any support to date.
He said his sons Oscar and Noah, five and three respectively, will read about what happened to their mother when they’re older. He said he doesn’t know how he will explain to them that two opportunities to save their mother’s life were missed.
“Clearly the HSE needs to be reformed, particularly at the senior level,” he said, adding that mandatory disclosure, and sanctions when this doesn’t happen, must be introduced.
Stephen said Irene would have wanted him to tell her story, so that her death is also not in vain.
Members of the committee applauded both Stephen and Vicky and thanked them for speaking out. Chairperson Sean Fleming said “some good may come out of their harrowing stories” if it leads to real change.
Apology
Earlier today John Connaghan, the acting head of the HSE, issued an apology for the confusion and alarm which was created in relation to the CervicalCheck programme “as a result of the failure to communicate with the women affected”.
Documents released yesterday showed that the Department of Health was aware of CervicalCheck’s stance of not informing some women of the outcomes of reviews into their cases.
The documents show that clinicians were told to use their judgement in “selected cases where it is clear that discussion of the outcomes of the review could do more harm than good”.
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