'Distressing' lack of data on patients refused vital bowel cancer tests
Toni Vermeulen had suffered possible bowel cancer symptoms for years before her cousin’s diagnosis with the disease prompted her to finally see a doctor.
The Alexandra woman’s GP took her concerns seriously and referred her for a colonoscopy – a diagnostic test for bowel cancer that sends a camera into the bowel to look for tumours.
However, the 42-year-old was left “devastated” when the Southern District Health Board refused the GP’s referral.
“I received a one-sentence letter telling me I didn’t meet their criteria and if I had questions to take it up with my GP ... that was it.”
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Vermeulen said she was at a loss to understand why she was declined as she had experienced several symptoms, including irregular bowel movements, for “several years” and had a family history of the disease.
Vermeulen’s cousin and Stuff journalist Jo Mckenzie-Mclean was diagnosed with advanced bowel cancer this year – but only after being refused tests in 2018.
“I was really grateful because my GP took me seriously, and he totally agreed I should be referred, but the hospital declined me instantly,” Vermeulen said.
The Southland Charity Hospital had offered to help her.
The hospital was the result of a campaign started by Blair and Melissa Vining. Blair Vining died of bowel cancer in 2019.
Health officials have admitted they do not have accurate data on how many colonoscopy referrals have been turned down by each district health board – a situation that appals cancer advocate Melissa Vining.
“One of the distressing things to me and other patients is the inconsistency of monitoring. When you have a region like Southern, with one of the highest rates of bowel cancer in the country and our country has one of the highest rates in the world, you don’t want high decline rates,” she said.
“It is imperative that declines are defined, monitored, managed and transparent.”
Colonoscopies were being declined because the GP guidelines for referrals were being applied incorrectly and too rigorously, she said.
“When they are rewarded for making people wait for shorter amounts of time, that is the focus ... [but] if you have a high rate of decline you are not going to detect bowel cancer early and people aren’t going to be saved.
“If it’s detected early – it is curable.”
The current health system was costing lives and wasting money, she said.
“We could make the biggest difference for people by getting them diagnosed early, avoiding the need for unfunded drugs or requiring surgery. We can save lives without all the costs.”
Vining said she received messages every week from people under 50 who were turned down for colonoscopies.
A Ministry of Health spokesperson said its focus was on “timeliness to treatment”.
It held colonoscopy data for accepted referrals against the three wait time categories: urgent, non-urgent and surveillance.
“We do receive summary decline data from some DHBs, but the measurement of declines is not consistent and is not nationally monitored.”
A national bowel screening programme was being rolled out around the country for people between 60 and 74, but there were calls to begin screening at 50 like in Australia.
Vining agreed screening should begin at 50, but not at the expense of symptomatic patients.
In April, Stuff reported a damning review had found the screening programme was given the green light for Southland and Otago despite serious “ethical” concerns it would compromise waiting times for symptomatic patients.
The review also showed the Southern District Health Board had manipulated colonoscopy wait time data to hide its inadequate resourcing.
“All they did was refuse a whole lot of colonoscopies and got their list down, so it all looked like everything was lovely,” report co-author Dr Phil Bagshaw said at the time.
Bagshaw called for a formal review into the harm caused before the screening programme was rolled out further.
The Bay of Plenty, Taranaki and Northland health boards were due to join the programme soon and the nationwide roll-out was expected to be completed by December.
Vining continued to challenge the “despicable” wait times for cancer assessments, for which the Southland District Health Board had been labelled “criminal” by radiation oncologist Dr Lyndell Kelly.
“The .. board’s surveillance list is running a year behind … it is particularly concerning,” Vining said.
The latest Ministry of Health figures show of the 7591 patients accepted for a surveillance colonoscopy across New Zealand in April, only 59.5 per cent (4516) received the treatment within 12 weeks.