Pippa van Paauwe, 40, has stage 4 cervical cancer. This developed after two of her previous smear tests were misread, due to human error. Photographed at home in September 2023 with her husband JD, and children Jarvis and Bea. Photo / Sylvie Whinray
A woman suffered emotional and financial distress because of an almost eight-month delay in being told her smear tests were twice incorrectly assessed as normal, when in fact she had cervical cancer that is now incurable, the Health and Disability Commissioner has found.
However, in a report released today Morag McDowell found no one can be held accountable for the human error that caused Pippa van Paauwe’s smear tests to be misread in both 2017 and 2020.
Those twin mistakes allowed her cervical cancer to develop past the point of curability, but were somewhat unavoidable, McDowell said. A recent change to HPV testing as the main method of screening will significantly cut the false negative rate, she said.
“[van Paauwe] has endured an extremely unfortunate set of circumstances.”
However, the lengthy delay in telling the mother of two about those errors breached her rights under the Code of Health and Disability Services Consumers’ Rights, McDowell determined.
There was confusion among clinicians as to who had primary responsibility for disclosing the smear review findings, McDowell found, and a lack of clear processes.
“Patients are entitled to an open, truthful and timely discussion about what went wrong and why,” McDowell said.
The 40-year-old mum publicised her situation in a Herald story last September.
In her complaint to the HDC, she said the thought that other women might be similarly failed by the health system keeps her awake at night.
“I would not wish my experience on my worst enemy. Before I die I need to know that I have done everything I can to make sure this does not happen to anyone else. I will have no peace unless I do.”
After heavy menstrual bleeding van Paauwe was diagnosed with stage 3 cervical cancer in March 2022. This was later upgraded to stage 4 in September that year.
In April 2022 her specialist asked the National Cervical Screening Programme (NCSP) - part of Te Whatu Ora Health New Zealand - to recheck her previous smear test results.
Cervical cancer is usually preceded by at least 10 years of pre-cancerous abnormality.
In December 2022 she was told that both her March 2017 and February 2020 smears were misread. If those tests had been correctly read, her cancer would likely have been curable.
Her slides had been pre-screened with an automated device, which finds 22 microscopic fields of view most likely to contain abnormal cells. These were then checked by the cytoscientist or cytotechnician.
In her report, McDowell agreed with Health NZ’s earlier finding that the false negative smear tests, “were the result of a misinterpretation of slides, for which no one can be held accountable”.
“In making this finding, I acknowledge how very unfortunate this situation is for [van Paauwe] — that in conjunction with the recognised false negative rate of cervical screening, [her] slides were misinterpreted consecutively, which accounts for the minority of false negative results.”
McDowell said she was pleased by the implementation of HPV testing as the primary method of cervical screening, which happened in September last year. Its testing is more effective than cervical cytology (smear testing), with 95% sensitivity as opposed to 70-75%.
“It is encouraging to read that the implementation of HPV testing will significantly reduce false negative rates, require each smear to undergo a double review, improve communication, reduce inequities for Māori, and improve access to screening.
“Although I appreciate that this does not change the outcome for [van Paauwe], I hope she takes comfort in the fact that this programme appears robust and accountable and will minimise the risk of her unfortunate situation happening to other women in New Zealand.
“I take this opportunity to encourage all women, especially wahine Māori, to get tested under the new HPV screening method.”
The results of the retrospective review of van Paauwe’s 2017 and 2020 smear tests, which found they had been misread, were first emailed to a specialist on May 6 2022.
They emailed the results to another specialist who had taken over her care on September 9, and asked them to inform van Paauwe, who had just been told of her Stage 4 diagnosis.
So as to not deliver more upsetting news, they delayed doing so until December 29 2022 - a decision they have now apologised in writing for.
McDowell said other failings included a lack of clear processes around a retrospective review of previous smear results in the event of cancer, and the fact an investigation into van Paauwe’s case by Health NZ happened only at her request.
The national screening unit has promised to this year introduce a formal audit of all cases of invasive cervical cancer, including a review of any slides reported as normal in the previous screening round.
Health NZ Te Toka Tumai Auckland (formerly Auckland DHB) is preparing new guidance on open communication for its staff.
van Paauwe is currently clear of detectable signs of cancer, following treatment including immunotherapy, which was self-funded to begin with and is now covered by ACC under medical misadventure.
She was glad better processes were being put in place, but told the Herald it was disappointing that no breach had been found about her smears being misread.
“The fact it happened consecutively to the same person remains too coincidental for my liking.”