"I can't imagine what you must be going through" is what Galway woman Lorraine Walsh has generally heard when she has told people she is one of the women caught up in the CervicalCheck scandal.
This week, she and Stephen Teap, another individual whose life has, they say, been "torn apart" by the controversy, tried to find words that might help people imagine.
Teap, from Co Cork, lost his wife and the mother of his two young sons, Oscar and Noah, last year and was only told in April that her smear tests from 2010 and 2013 were incorrect.
He and Walsh are the two patient representatives appointed by the Minister for Health Simon Harris to a steering committee tasked with overseeing changes to the screening programme.
Walsh is one of the 221 women (the number rose by 12 this week) who have received incorrect smear tests and been told that audits have shown they could have different outcomes.
In a push for concrete plans and deadlines for action, Teap and Walsh read out their statement, entitled “Imagine”, on Thursday to health officials at their second meeting of the committee.
Speaking to The Irish Times, Mr Teap said they wanted to "personalise this scandal" so the officials could see that there were "not numbers" but "real people and real victims at the end of this".
Delays
Their call for action came amid delays in records being released to the Government’s scoping inquiry and a protracted handover of medical records for legal claims (both Teap and Walsh plan to take cases).
“Imagine going home this evening and your children not being there,” Walsh read from the pair’s statement to the committee.
“Imagine deleting them from your life, the moment you found out that you were going to have a baby, the moment they were born, their first cry, their first steps, their first words, the first time they said Mama or Dad. Imagine not tucking them into bed at night and reading them their favourite bedtime story.”
She urged them to “imagine seven surgeries to try and preserve fertility and allow us to have the children we so desperately longed for, followed by failed IVF because the surgery depleted my ovarian reserve due to compromised blood supply”.
She spoke of her desperation to become a mother, exploring the possibility of surrogacy, even in India where "they treat the surrogate mothers similar to battery hens which I couldn't have on my conscious".
“Imagine over five years of our lives being consumed with pain, surgery, heartache, tears and disappointments,” she said.
She “didn’t need to imagine this; this is her life,” the committee was told.
Walsh also shared Teap’s deep personal losses: the milestone celebrations in his family that his wife would not share with him – the first day of school, birthdays, Christmas mornings.
“Imagine during the night your child being sick and crying for the tender touch of his mother, trying to comfort him in his sickness while consoling him that she can’t be there to hold him,” she said.
Then she asked them to imagine now being told “that it all could have been avoided if someone had done their job properly”.
Intertwined
For Walsh, her story and Teap’s are intertwined.
“I am blessed with a wonderful partner that Stephen longs to have back in his life and Stephen is blessed with two beautiful boys that I so desperately wanted.”
They were both now “incomplete”, she said.
Walsh said the first committee meeting “bothered” her: there were “a lot of blank faces” and “don’t knows” in answer to questions about what actions would be taken and when they would happen.
For a start, the pair want the committee to publish the minutes of its weekly meetings, especially given that both Teap and Walsh are taking a day out of their busy weeks to travel to Dublin for the meetings.
“The steering committee seems to be an undercover operation right now,” said Teap.
The Department of Health said Mr Harris intends to publish regular updates and “relevant meeting documents” from the committee and its focus will be “on making timely and clear progress on all aspects of the terms of reference”.
Walsh, who is free of cancer now, was diagnosed in 2012 after a smear test. Two consultant gynaecologists have told her that had a 2011 smear test not been misread, she could have avoided surgery.
“Had it been read properly the year before, I would have been able to have a baby,” she said.
The 2011 test was analysed by the Clinical Pathology Laboratories, the Texas lab that misread a smear test carried out that year for Vicky Phelan, the now terminally ill Limerick woman whose €2.5 million High Court settlement with the lab – and her refusal to sign a confidentiality agreement – exposed the scandal.
“The screening system saved my life but let me down deeply,” said Walsh.
The Galway woman is angry about what happened to her but is determined to put it to constructive use on the committee to prevent it happening again, feeling a responsibility to the 220 others she represents.
“I cannot change the past,” she said, “but the reason I am going up and down to Dublin is that I can change the future.”
