To Toni Adie-Kinraid (centre), her daughters Ruby Adie-Kinraid, 5, and Anashai Kinraid, 17, and her husband Shaun are everything. Photo / Craig Baxter
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 Kiwi cancer sufferers have received large taxpayer-funded payouts after being let down by the public health system - with more than $15 million paid in the past five years - after they were misdiagnosed, or not diagnosed quickly enough.
A Herald special investigation can reveal the cost of ACC claims has boomed from just $3200 five years ago to more than $5.1m in 2017/18.
Unfortunately the payouts came too late for many, who have died or will die because of errors that should never have happened. One mother-of-two told the Herald she could likely have avoided a terminal diagnosis had her GP acted on symptoms including intense stomach cramps and blood in her stool.
She now has only months to live.
"My chance to fight was taken away from me," Toni Adie-Kinraid said.
ACC payouts are made under a "no fault" system, which implies no wrongdoing or blaming of individual health workers. Money can cover lost earnings, treatment cost and rehabilitation.
Health advocates say the ACC claims are "the tip of the iceberg" of poor treatment, and patients we spoke to said they just wanted to focus on the precious days they have left.
In a week-long series starting today, the Herald will detail how thousands of New Zealanders battling cancer are slipping through the cracks of the public health system - and what needs to change to stop the suffering.
Our findings include:
• Alarming trends of some GPs failing to pick up or take action on the deadly disease.
• Doctors unwilling to refer for diagnostic testing.
• A dire need for more specialists.
• Appalling wait times.
• "Unacceptable" inequalities to accessing care.
• Urgent calls for a national body.
The number of cancer-related compensation payouts has rocketed from five in 2012/13 to 113 in 2017/18, data obtained from ACC shows. The total annual cost over that period spiralled from $3207 to $5,126,717.
Health and Disability Commission (HDC) reports show the same errors are happening again and again.
Of the 166 cancer sufferers who received payouts between July 2013 and June 2018, nearly half were related to failures to diagnose, nearly a quarter were for failures to treat, 16 per cent were for not following up and 13 per cent for not referring the patient to the appropriate specialist.
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AMY'S STORY: The horror of watching two loved ones suffer unnecessarily
Many patients spoken to by the Herald had terminal bowel cancer. Mary Bradley, Bowel Cancer New Zealand spokeswoman, said people making claims were just the tip of the iceberg of substandard care.
"A lot of people don't lodge a complaint or file an ACC claim because it is quite a process to go through. If you're dying and already dealing with a lot of trauma and family is too, fighting the system isn't usually high up the priority list."
These mistakes are happening far more often than they should, she said.
Patients interviewed said not enough was being done to hold doctors to account, and mistakes would continue until that changed.
However, experts told the Herald medics were properly held to account through the complaint system using the HDC, the Medical Council and district health boards (DHBs).
Health Minister David Clark says it is not acceptable that New Zealand is falling short of a high standard of care and it was understandably very distressing for the patients affected and their families.
"It's important clinicians and others working in our health services learn from these incidents to prevent them recurring."
Clark said in general he thought patient safety had improved in an environment which encouraged greater transparency, where issues were more likely to be identified and health practitioners were supported to acknowledge where mistakes or adverse outcomes had occurred.
"It's important to remember people can still take complaints about their treatment to the Health and Disability Commissioner, the Medical Council, and the Nursing Council."
He said the public could be confident the vast majority of New Zealanders working across our health services worked hard to deliver the best care possible.
University of Auckland researcher Katherine Wallis, who has conducted several studies on medical accountability, said in cases overseas patients get compensation through suing for malpractice. However in New Zealand money is paid out through a "no-fault" system.
"It makes it much easier for patients to get compensation because they don't have to prove the doctors have done anything wrong," Wallis said.
New Zealand's no-fault system was introduced in 2005 when "medical misadventure" claims were changed to "treatment injury" which implied no wrongdoing or individual blaming. It meant ACC was no longer responsible for investigating actions of a particular health practitioner.
Instead, ACC staff can refer compensation claims to the Medical Council and the Ministry of Health's general director if they believe there is a risk of future harm. Patients can also lodge a complaint through the HDC.
However, many of the patients the Herald spoke to weren't aware of their rights to file a complaint with the HDC, or felt not much was likely to change if they did.
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."
The Herald asked Wallis if, since that report, she felt doctors were sufficiently held to account and she said they were through the separate complaint system.
Of the 171 cancer-related claims, 133 were notified to the Ministry of Health's director-general because there was concern of injury reoccurring. A further 11 declined claims were also referred.
They were declined due to there being no progression of the disease despite failures beingpicked up in ACC's investigation.
A ministry spokeswoman said the director-general of health sends the harm notifications individually to the providers where the event occurred, asking them to review the event if they have not done so already.
"The providers are asked to provide feedback to the ministry on the findings of their review, including an outline of the causal factors involved in the event, what actions have been taken to reduce the risk of similar events and what their estimate is of the risk that still remains after the action has been taken.
"The ministry then reviews the feedback they receive and follows up on any concerns with the provider," the spokeswoman said.
Only 19 of those ACC claims were referred to the Medical Council for professional performance reviews.
ACC payouts covered weekly compensation for lost earnings, lump sums and death benefits, treatment costs and all forms of rehabilitation and personal support.
Mother-of-two Toni Adie-Kinraid shouldn't be dying.
If her doctor had taken her severe symptoms seriously in the three years leading up to her terminal diagnosis she would now be planning for her future, thinking about birthdays and special events like Christmas that are still to come with her family.
Instead, she has only months to live.
"My chance to fight was taken away from me. A long life with my loving husband and two beautiful girls was taken away from me because my doctor didn't think it was serious and that's just not fair," Adie-Kinraid told the Herald.
An ACC report, which granted the 37-year-old "treatment injury coverage", shows it's likely she could have been saved if her doctor had acted.
Dr David Henry, who gave ACC external clinical advice, said failure to treat the young Dunedin mother started in November 2015.
Henry said that on that visit an examination should have been performed, her alarming family history should have been identified and specific follow up should have been done to ensure resolution of symptoms.
Adie-Kinraid said quite often she would go to the doctor with blood in her stool after waking at 3am with intense stomach cramps and constipation.
"I would be presenting with these symptoms and just get given medication without any examinations."
She said she started thinking all her pain was in her head.
"I would come home to my husband and say I just need to cut dairy out of my diet or gluten, obviously there's nothing wrong with me."
Southern DHB medical oncologist Sharon Pattison, who also gave ACC advice, said the cancer would have been discovered in November 2015 if an examination had been done.
Instead it wasn't until February 2018, when Adie-Kinraid presented to a different doctor with intense tailbone pain, that further investigation was done.
"I was in tears by this stage because the pain was just so intense.
"The new doctor did an immediate rectal examination and could feel the mass," Adie-Kinraid said.
Within three days, the young mum was able to get an internal examination by a specialist.
By then, it was too late and Adie-Kinraid was terminal.
Pattison said it was unlikely the cancer would have spread if it had been picked up in November 2015 and treatment would have been "curative".
Adie-Kinraid said finding that out had been difficult but she hoped sharing her story would be a wakeup call.
"I was happily married with two beautiful girls and I was thinking about getting back into the workforce now that my second daughter is at school," she said.
"I know these tests cost money but you cannot put money on people's lives."
Adie-Kinraid received a lump sum payment to support her until her death and her family after she was gone.
But she says her compensation doesn't begin to cover the loss she and her family have suffered.
"You can't put a monetary figure on a person's life," she said.
An ACC spokesman told the Herald Adie-Kinraid's claim was referred to the director-general of health as a "risk of harm notification".
However, Adie-Kinraid is not aware of any action taken against her GP or the general practice. She said she never received an apology and hasn't had any contact from the practice since discovering the error.
The general practice declined to comment. The Herald understands the GP is still practising.
Tuesday: Failings at a primary care level
Wednesday: Unacceptable waiting times
Thursday: The inequalities based on age, income and location
Friday: What needs to happen?
Family say there are two people who may have information but are yet to be located.