Every day cancer patients are being failed by our health system as signs of the deadly disease are ignored or misdiagnosed. As a result, lives are being lost. In a five-day series starting today, health reporter Emma Russell looks at what's going wrong and what needs to change to ensure patients are diagnosed early enough to give them a fighting chance of survival.
Hundreds of New Zealanders are dying while waiting for cancer treatment – with some experiencing delays of up to six months.
A Herald investigation has found some patients around the country with a high suspicion of cancer are waiting between three to six months to be picked up by the public health system.
In some cases patients die before getting treatment and they are not included in the Government's collection of data.
Some patients told us they were faced with no option but to pay thousands of dollars to get treatment privately because they couldn't afford to wait. Others spoke of loved ones without the means to go private, and who died while waiting for treatment in the public system.
One woman suffering lung cancer said she had waited three months to start chemotherapy, and was still waiting.
"I can even see it growing around my neck and throat," she said. "I am going to be one of those statistics of lung cancer deaths."
Reasons for treatment delays include a dire shortage of specialists, some DHBs having less resourcing, and what health advocates say is the Government's failure to hold health boards to account if they miss treatment targets.
Under the Ministry of Health's Faster Cancer Treatment standards, all DHBs are expected to treat 90 per cent of patients with a high suspicion of cancer within 62 days.
However, public reporting of each DHB's performance to meet these targets was down-scaled by the Labour Government in June last year.
The targets used to be published in national newspapers but now people have to actively search for them on the Ministry of Health website.
Health Minister David Clark said targets in general created "perverse incentives". However, he wouldn't comment on cancer specifically.
And despite Clark saying he had taken a number of steps to ensure New Zealand had more skilled professionals across all health services, data released to the Herald shows 11 of 20 DHBs were not meeting the target, between January and March.
Pulling back on ensuring DHBs are meeting this target was costing lives, National's health spokesman Michael Woodhouse said.
"Losing the accountability will mean more illnesses and more fatalities in our health system that could have been prevented."
Health advocates echoed Woodhouse's comments, saying the amount of time some patients are waiting is "unacceptable" and people are dying as a result.
Cancer Society of New Zealand medical director and Southern DHB oncologist Chris Jackson said it was unacceptable to hear how long some patients were waiting for treatment.
Getting people treated quickly was essential, he said
"Cancer doesn't get smaller. The longer people wait, the bigger their cancer gets so it's not surprising people who have to wait that long were dying."
The deadly clock
Information obtained through the Official Information Act shows how quickly life-saving treatment is offered can depend on your address.
Despite Auckland having the highest number of trained specialists equipped to deal with cancer and the best resources to treat the disease, demand sometimes overruled.
Auckland DHB had some of the longest waits in the country, which was surprising given they had been meeting the FCT target. Experts say this is because there was a lot of patients who are excluded from the collection of data.
One man suffering prostate cancer waited almost six months to start treatment in June last year, far longer than the Government's 62-day target.
An Auckland DHB spokeswoman said this was because the person was seen as "low risk" and there were theatre capacity issues.
The DHB also said some patients had died before getting treatment and were not included in the data provided.
Auckland DHB's chief medical officer, Dr Margaret Wilsher, said reasons for the delays included staff shortages, fully booked theatre rooms, patients put on hold because they were considered low risk and patients getting infections that delayed treatment.
The departments under the most pressure at Auckland DHB were urology, which included treatment for bladder, kidney and prostate cancers; head and neck; and gynaecology, which included treatment for woman with cervical, ovarian and uterine cancers.
Wilsher acknowledged that at times people were waiting longer than the DHB or the patient would like.
"We are always looking at ways that we can do better for our patients."
Patients waiting longer than the 62-day national target were not uncommon. The data collected from nearly all DHBs showed patients around the country were frequently waiting more than four months to start treatment.
Holding DHBs to account
While the Ministry of Health collects each DHB's "Faster Cancer Treatment" (FCT) performance, that data has not been widely reported since June last year.
At the time Clark said: "Fundamentally, I don't feel confident publishing targets which I think might incentivise money to be poorly spent. We want the best outcomes for New Zealand patients and that's why we've moved away from these targets."
The Herald can reveal that between January and March more than half the DHBs around the country did not meet the national target. They were:
• Capital and Coast (89.1%)
• Counties Manukau (69.1%)
• Hawkes Bay (72,4%)
• Lakes (71.4%)
• MidCentral (74.3%)
• Northland (77.6%)
• South Canterbury (88.9%)
• Southern (81.1%)
• Waikato (85.7%)
• Waitemata (82.6%)
• Whanganui (81.3%)
Multiple health advocates say the DHBs that are not meeting target are not being held to account.
In the UK, hospitals that do not meet national health targets, such cancer wait times, are financially penalised. This does not happen in New Zealand.
Instead, the Ministry of Health's general director of health Dr Ashley Bloomfield told the Herald, in March, ministry officials were working with DHBs who were not meeting target to understand what the issues were, and what specific actions were underway to improve performance.
Nearly two months on, the Herald asked Bloomfield what issues were identified and what action had been taken. He wouldn't directly answer the question.
Instead, he said the process for developing a cancer control plan continues and includes meetings with representatives from the cancer sector, consumers, clinicians, DHB representatives and Hei Ahuru Mowai (National Maori Cancer Leadership Group).
"The key issues were well canvassed at the Cancer at the Crossroads conference in late January, which the ministry co-sponsored, and this is directly informing the work on the plan."
Clark echoed this response, saying an interim cancer action plan would be in place by June.
However, he refused to comment on whether any new money would be put towards cancer in the upcoming Budget.
Pre-election, Labour promised $10 million to establish the agency and a further $10m to get work underway. However, since then no new money has been allocated to creating the promised agency.
Jackson said an agency was needed to hold DHBs to account and ensure they are keeping up with a national standard of care.
"While the ministry has said they are drafting a cancer action plan there has been no formal announcement or no briefings on developing an agency."
Woodhouse said the "limited effort" to reduce these wait times was "simply not good enough".
"[National] has met with DHBs all around the country and we've heard all the reasons for these wait times - staff shortages, resource constraints, buildings getting redone, funding issues. Those issues are always going to be there but they need to be addressed.
"We have a minister who is sitting on the sidelines, not dealing with these issues and leaving low expectations for his ministry."
Woodhouse cited research published in the New Zealand Medical Journal in 2017 that showed thousands of lives were being saved by a target to reduce Emergency Department waiting times, halving the number of deaths.
EDs were operating more efficiently than before the target was introduced by National in 2009 with some patients waiting less than three hours to be admitted to the ward, the peer-reviewed study showed.
Hidden from the targets
Cancer specialists said more work was needed to accurately measure how each DHB was treating cancer patients.
Jackson said only about 15 per cent of cancer patients were picked up in the Government's FCT targets because not all were initially deemed as having a "high suspicion of cancer".
For example, under the ministry's definition, to have a "high suspicion" of bowel cancer a mass needs to be identified in a CT scan. However, a patient might not have a CT scan when the referral to see a specialist was made or the mass might not have been visible in the scan.
ACC CLAIMS: Payouts too late for some victims
EXPERT VIEWS: More needs to be done
KARYN'S STORY: "Why wasn't I scanned earlier?"
CRAIG'S STORY: He was told by his doctor "It was nothing serious"
AMY'S STORY: The horror of watching two loved ones suffer unnecessarily
GP FAILURES: People are dying of cancer because their symptoms are being ignored
He said a separate target was needed for each cancer type as some tumours were easier to treat than others.
"For example, breast cancer is normally quicker to treat partly because there are well organised pathways with most hospitals having a "breast lump" clinic with radiology, surgery and pathology all working together and seeing patients in the same day."
Whereas, stomach cancers were often harder to treat due to the amount of testing involved before hand to ensure the patient was fit for surgery, he said.
"At the moment, with the government collection of data, all the departments' wait times are getting lumped together, making it difficult to see which departments are struggling and where the issues are."
Radiation oncologist Dr Carol Johnson echoed the need for clearer targets, saying it was almost impossible to get 90 per cent of patients into radiation or chemotherapy within the 62 days because of the testing and preparation that was needed to be done beforehand.
"That's not to say high targets were not a good thing because they are, and we have seen dramatic improvements with them, but we need to go a step further to accurately measure the capacity levels."
Johnson said the targets were limiting when it came to measuring the constraints on each service.
"Unless a patient is having radiation as their first line of treatment, which isn't that common, then radiation is excluded from these targets."
Shortages of specialists
Shortages of gynaecology oncologists, radiation oncologists, medical oncologists, gastroenterologists, anaesthetic technicians and physicists are all contributing to excessive wait times - and health advocates say not enough is being done in response.
Of particular concern is bowel cancer. New Zealand has the worst rates of bowel cancer deaths in the world, and at least half of the country's specialists who help detect the deadly disease are expected to retire in the next decade.
These findings came from a 2018 report by the New Zealand Society of Gastroenterology (NZSG).
More than 40 per cent of the gastroenterology workforce was likely to retire in the next 10 years, and only eight specialists are being trained each year – with half of them leaving to take jobs overseas.
In the report, New Plymouth gastroenterologist Dr Campbell White said the workforce shortage was "at crisis point". There are about 1.93 gastroenterology specialists to 100,000 New Zealanders, compared to three to 100,000 in Australia.
The rollout of a new national bowel cancer screening programme was only making things worse, the report stated.
One specialist wrote: "In our DHB we're constantly being criticised about waiting times for CTs and MRIs, as well as access to theatre and waiting lists for elective surgical procedures.
To roll out a bowel screening programme in this environment is simply not sustainable."
To cope, about 2000 colonoscopies were outsourced to the private sector in 2017 at Waitemata DHB alone.
How to make it work
There are, however, examples on how to reduce wait times. Canterbury DHB, for example, has met the cancer treatment target because of a clearer referral pathway.
Canterbury DHB executive director of planning, funding and support Carolyn Gullery said part of the problem they had with getting cancer patients treated quickly was that patients were expected to visit a number of different departments - such as surgery, radiation, chemo and diagnostic care – and the process wasn't easy to navigate.
The DHB now has a referral process that runs a lot smoother – after a referral from a GP the patients might have a specialist consultation and then several referrals are made for tests at one time.
"Before this, days were consumed by one department writing notes and referrals to another department who then had to pick it up and book it," Gullery said.
The DHB has been sharing their success with other South Island DHB in a bid to help improve wait times across the board.
For six months Whangārei woman Melanie Schonewille battled with "unbearable pain", not knowing if the large mass found inside her ovaries was cancer or not.
"After four months of waiting to see a gynaecologist, I was ringing nearly every day begging them to fit me in but I was told my appointment wasn't for another two months – it was awful."
It wasn't until she was rushed to the emergency department, with fluid in her abdomen, tests were done which showed she had stage four low-grade serous ovarian cancer.
To make matters worse, she then waited another month for surgery at Auckland DHB to remove the tumour and insert a stoma bag.
She was told by her oncologist that only four surgeons in the country could do the complex 10-hour surgery and for this reason her treatment could not have been done any quicker.
Her doctors say it's a slow growing cancer and she has between five to nine years to live.
The 47-year-old does not know if her outcome would have been better if she had been seen by a specialist sooner but describes the wait as terrifying.
"The not knowing what was wrong with me or how serious it was, was the worst part."
She originally saw her GP complaining about excessive bleeding and abdominal pain.
Upon examination, her GP said she could feel that mass and strongly advised she get an ultrasound that day privately as the wait through the public system would be too long.
"Had I not been able to pay I would have had to wait potentially six months for the scan on top of everything else," Schonewille said.
The ultrasound, which was sent back to her GP, showed a 14cm by 20cm mass that could potentially be cancer. Her GP then sent an urgent referral to the hospital for Schonewille to see a gynaecologist.
The former travel agent said during the months of waiting she struggled to even get to work.
"I had experienced a lot of bleeding. I'd lost weight and always had the urge to pee. I was trying to work but was in a lot of pain as the fluid was pressing on all my organs.
"I was taking pain relief every day because it was that unbearable."
After surgery, Schonewille said things seemed to progress a lot quicker.
During the operation they were able to remove most of the tumour. Since then, she's had six rounds of chemo at Whangārei Hospital every 21 days and continues to be monitored.
She continues to fight but every day is a battle.
"I'm lucky to have good friends in Whangārei and my dad in Auckland to look after me."
She's speaking out in a bid to prompt change.
"The system needs to change. It shouldn't have taken me turning up in the emergency department for action to finally be taken. There needs to be a better triage system."
Schonewille says she knows others who have experienced the same delays she has.
"Something needs to give."
Yesterday:Failings at a primary care level
Thursday: The inequalities based on age, income and location
Friday: What needs to happen?