Gaps in CervicalCheck controversy 'heart-wrenching and confusing for patients', conference hears
The ongoing gaps in information about the CervicalCheck controversy are "heart wrenching and confusing for patients and families," a conference was told today.
Lorraine Walsh, a businesswoman from Galway, who developed cervical cancer and is among the 221 at the centre of what she termed a "debacle", said there are a lot of "questions and answers still outstanding."
The full facts have yet to emerge and this is "heart wrenching and confusing for patients and families and frustrating for doctors," she said.
Ms Walsh, who has been cancer-free for a number of years and was successfully treated, is among the 221 women, most of whom were only told in early summer that their smear test result was incorrectly reported.
CervicalCheck did an internal audit re-examining the test results of women it was notified developed cancer but these reports were not passed on in the majority of cases until the Vicky Phelan court case in April revealed their existence.
It has yet to be determined how many of the wrong results were due to negligence or the limitations of screening.
Recalling her cervical cancer diagnosis at the age of 34 in 2012, she spoke of her devastation but is grateful to her treating medical and nursing team for their kindness care and expertise.
However, in April this year she was contacted by CervicalCheck and told of the previously undisclosed audit.
The audit told her that a screening test prior to her diagnosis was read inaccurately.
“It had been reported at the time as low grade CIN1 pre cancer cells, but following the review it was reported as high grade CIN3 pre-cancer cells.
"Immediately after this disclosure, followed some explanations about screening and its limitations. Truthfully my mind was blown; I had not heard about these limitations or false positives or false negatives before.
"I wanted to know the bottom line, what detail did the audit find and did it fall within the limitations of screening or was there negligence involved?"
The non-disclosure of the audits – which were sent to treating doctors by CervicalCheck in 2016 – has led to a major communications and trust issue, she said.
“Sure patients are not just about appointments,” she commented to the gathering which is examining the wider issues around screening following the Scally inquiry into the scandal.
“The doctor patient relationship is so important for all of us – and nothing should ever knowingly happen or be allowed to happen that undermines that relationship.”
She added: "I am not here to point fingers or lay blame, but we must all learn from this and I believe we must all be responsible in taking a proactive approach to situations. It is vitally important to have direction and purpose, without this we lack focus and clarity, a problem that many clinicians were faced with when given the audit results.
"They were supplied with limited information on the audits and the audit results and forced under duress to disclose this information. Subsequently these disclosure meetings in some cases resulted in poor communication."