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, health reporter Emma Russell looks at what is going wrong and what needs to change to ensure cancer patients are diagnosed early enough to give them a fighting chance of survival.
Experts say more needs to be done to ensure New Zealand cancer sufferers are not slipping through the cracks of the public health system.
Chris Jackson, the Cancer Society's medical director and Southern District Health Board (DHB) oncologist, says mistakes shouldn't be happening and the whole system needs to be looked at again.
He said any delay or a missed cancer diagnosis was a tragedy for the person affected and their whole family.
"We need to ensure that doctors have the right training and access to the best diagnostics that they can, and that there are strong referral pathways so that patients don't fall through the cracks," he told the Herald.
Jackson has been advocating for a national cancer agency, funded by the Government but acting independently like Pharmac does, to improve the system.
He said the agency was needed to hold DHBs and medical practices to account and ensure New Zealanders got the best care possible.
There was currently no umbrella group and New Zealand lacked national leadership in the area, he said.
"Governance will help pull the disparate threads together and create high-quality mechanisms to prioritisation of investment."
For example, developing clear referral pathways for high-risk symptoms so patients were "fast-tracked" through the system should be a priority.
"These models need to be encouraged, supported, and rolled out around New Zealand evenly, not just some DHBs."
Jackson said there were huge variations between the 20 DHBs in the rates of people who were diagnosed through the emergency department, which reflected poor access to early diagnosis and primary care.
"People presenting to the emergency department for their first diagnosis is a big concern and more work is needed to ensure people are getting picked up earlier," Jackson said.
ACC (Accident Compensation Corporation) payouts are made under a "no fault" system, which was introduced in 2005 when "medical misadventure" claims were changed to "treatment injury". This implied no wrongdoing or individual blaming and meant ACC was no longer responsible for investigating actions of a particular health practitioner.
Health and Disability Commissioner Anthony Hill said the price of having a "no-fault" compensation system was that people could not sue.
Now, accountability comes through complaints, performance reviews and further training by the appropriate provider.
"Sometimes all a patient wants is to be heard and that's accountability enough," Hill said.
However, accountability is something Hill and his colleagues constantly think about.
"We need to be ensuring we are providing accountability at the right level and I do think we effect change in hundreds of situations and achieve resolution."
Hill was aware there was a lot the commissioner didn't hear about because people did not always complain.
"I think if people are feeling there has been a serious departure of care then I would encourage them to complain.
"I am conscious that when you are at the end of your course and something terrible has happened the energy is rightly on spending time with family.
"Even in that space sometimes it is appropriate to make that complaint in the hope that tomorrow will be different for someone else," he said.
While the Health and Disability Commissioner (HDC) received thousands of complaints each year, only about 4 per cent were formally investigated.
Hill said often on assessment, simple solutions could be made or action had already been taken by the time the complaint was received.
"Some people did say New Zealand didn't have enough accountability but others say there is too much.
"It is true that some complainants wish an outcome that cannot be achieved, for example a doctor to lose their practice, but the feedback we get is that when change happens and if people know it won't happen to someone else then it is seen as powerful and useful," Hill said.
Multiple researchers – including former HDC Ron Paterson and University of Auckland medical professional accountability researcher Katherine Wallis - have questioned whether our doctors are properly held to account.
In a 2013 report, Wallis said: "The trend for decreasing medical professional accountability in New Zealand raises the question of whether doctors are adequately held to account under New Zealand's regulatory system."
In a book Paterson published in 2013, titled "From prosecution to rehabilitation: New Zealand's response to health practitioner negligence", he stated: "It must be asked whether the pendulum has swung too far in New Zealand. Has the 'promising future for accountability' been realised when so many families struggle to see individual practitioners or their employing organisation held to account for a lack of care with fatal consequences?"
Bowel Cancer NZ spokeswoman Mary Bradley, a cancer survivor, said she was seeing failures frequently - and it was a huge concern.
"People are visiting their GPs with concerning symptoms and just aren't being fast-tracked. Instead they are waiting a ridiculously long time to be seen by a specialist," she said.
During this time, patients went from having a fighting chance to becoming terminal and that was a big gap in the system, Bradley said.
She said one of the biggest problems was not having enough specialists and resources to manage the demand.
"I've spoken to patients who have been rejected by the DHB because they don't fit enough of the criteria for a colonoscopy.
"One was a woman who was over 60 years old, had three serious symptoms, a family history and finally talked her doctor into referring her but the DHB rejected her," Bradley said.
She said a report last year showed there were not enough colonoscopists and half of New Zealand's gastroenterologists - who specialise in the stomach, small and large intestines (bowel), liver, gallbladder and pancreas - were expected to retire in the next 10 years.
"And all we are doing is training around eight gastroenterologists each year and statistics show that four will leave the country to work overseas."
She said more emphasis needed to be put on ensuring there was an adequate workforce to keep up with the growing demand.
Wallis said there was a lot that could be learned from the ACC data but the resources weren't available.
"For example, you could get regular reports back to doctors saying, 'This is what we've had come through this month or this year' so there is a real target for us to improve."
She said this would give all doctors the opportunity to learn from mistakes, not just one doctor who might do an audit and change their practice.
"You have got to disseminate [across] the whole profession rather than just try to hold one person to account."
She said most mistakes were not deliberate, so punishing the individual doctor wasn't productive.
However, in order to use the ACC figures for learning, government resources were needed.
READ MORE:
ACC CLAIMS: Payouts too late for some victims
CRAIG'S STORY: He was told by his doctor "It was nothing serious"
KARYN'S STORY: 'Why wasn't I scanned earlier
AMY'S STORY: The horror of watching two loved ones suffer unnecessarily
Tomorrow: Failings at a primary care level
Wednesday: Unacceptable waiting times
Thursday: The inequalities based on age, income and location
Friday: What needs to happen?
'He has disregarded our voice and continued with this divisive kaupapa.'