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 part two of a five-day series health reporter Emma Russell looks at why some patients are falling through the gaps.
Thousands of New Zealanders are told they have cancer after being rushed to an emergency department - and by then it's often too late to start treatment.
In the past year alone, more than 1000 people from just eight district health boards around the country were told they had cancer only after being referred by ED to a specialist.
This number is likely to be a lot more as the remaining 12 DHBs weren't able to provide the Herald with these figures.
An emergency doctor told the Herald this was likely due to people not being able to access a GP for social or economic reasons - or people were seeing a GP but referrals weren't getting followed up and their health had deteriorated while they were waiting.
Many patients the Herald spoke to claimed they ended up in ED after their GP told them it was unlikely to be cancer despite making no examination or sending the appropriate referrals to rule it out.
One father-of-two says his doctor told him he was too young to have cancer and he would likely be dead by now if it was.
He's now terminal and his wife told the Herald: "I just wish the GP had listened and done more tests instead of fobbing him off".
The Royal New Zealand College of General Practitioners (RNZCGP) says this is only happening to a small number and the majority of cancers do get diagnosed within one or two visits.
However, the college's medical director Dr Richard Medlicott told the Herald unfortunately this will keep happening because that's the nature of difficult diagnosis.
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"We will certainly work to try and make it better but you are never going to get it 100 per cent," Medlicott said.
GPs working on 'false assumptions'
Prostate New Zealand chief executive Graeme Woodside said the lack of training some GPs had for diagnosing cancer was a huge concern.
"A lot of GPs are working on the assumption that in order to give a diagnosis there needs to be symptoms but this is simply not the case."
He said the foundation ran a survey on this last year involving more than 500 men who had been diagnosed with prostate cancer.
"Around 61 per cent had experienced no symptoms at diagnosis. GPs working on that false assumption are playing with the lives of these men. It should be picked up before symptoms persist."
The Lung Foundation chief executive Philip Hope agreed GPs needed to prioritise "upskilling" in cancer care, saying around 80 per cent of lung cancer patients are misdiagnosed or suffered significant delays.
"Getting national leaders on board with the need to upskill has been a real struggle and I think there is a stigma from some GPs who feel like they already know all there is to know."
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One solo mum who lost her fiance to bowel cancer said the treatment he received from his GP was awful.
She said there was definitely an unwillingness to learn new information among some GPs and that needed to change.
Medlicott said he didn't think this was a training issue as there was oncology training within the college's curriculum.
"There's no evidence that younger GPs coming through have worse rates of misdiagnosis compared with older GPs.
"Clearly as you get older your clinical antenna gets a bit sharper but errors can occur at any stage unfortunately," he said.
For example a patient with bowel cancer may be told the likelihood is they are too young and it would be unusual to have the disease.
Medlicott felt communication errors and lack of safe-netting were more of a problem saying it was something the college was working on with all their trainees.
"One thing we are doing with all our trainees and in our GP assessments is saying, 'What was the plan to do afterwards if things didn't get better'," he said.
"For example say someone presented with a gut infection and it was still there in two weeks, make sure they came back."
What needs to change?
Whanganui general practitioner Dr John McMenamin, who has been working with the Cancer Society of New Zealand to help improve these issues, said more training and national-led reviews were needed.
He said cancer was a developing field and upskilling to obtain new information was crucial.
For example, one of the biggest difficulties for GPs is diagnosing patients who present with vague symptoms such as abdominal pain or fatigue which carry a very low risk of cancer.
He said safety-netting is an area of primary care that was being actively developed.
"This means that people who have low-risk symptoms are closely monitored which means processes need to be in place to ensure this happens and identifying the barriers that may prevent a patient from coming back, for example cost."
He said one of the most powerful methods for ensuring general practices were upskilling was a UK concept called cancer SEAs (significant event analysis).
This involves individual clinics looking at every cancer diagnosis and those missed to identify any potential need for improvement.
An example might be a patient who presents with a number of vague symptoms and the GP might make a referral to see a specialist, but there is a delay. McMenamin said a CT scan could also have been ordered to help fast-track the appointment with the specialist.
While this practice was being used by some medical centres, it was not a national mandatory standard.
He said that was just one thing he wanted to see packaged in the Government's national cancer control plan which is due to be released in June.
The plan is a draft proposal on how we should be tackling cancer.
Other suggestions included better access to diagnostic testing and regular nationwide reviews of all general practices to ensure they are keeping up with national standards.
He added GPs needed to have an active role in a patient's general health care after a cancer diagnosis.
"At the moment what tends to happen with patients that have cancer is they get into secondary care [with the hospital] and so much attention gets put on this cancer that other health issues are put to one side," McMenamin said.
He said there was increasing evidence that showed if GPs were actively involved in the patient's care after a cancer diagnosis their outcomes were improved.
But he said there was still a long way to go and national leadership was crucial.
"Cancer is a developing field and there is constantly new information that needs to be shared," McMenamin said.
Why aren't they being diagnosed by a GP?
Information obtained through the Official Information Act showed out of the eight districts that were able to supply the Herald with statistics, Canterbury DHB had the highest number of people being diagnosed with cancer after visiting the ED.
Between March 2018 and February 2019, 470 people found out they had cancer after being referred by ED at Canterbury DHB.
Each month, these numbers varied from 29 to 47.
Counties Manukau DHB was close behind, with 298 people discovering they had the deadly disease within the same timeframe. Their monthly numbers varied from five to 39.
The DHBs who could not provide the Herald this information were; Northland, Waikato, Bay of Plenty, Lakes, Tairawhiti, Taranaki, Mid-Central, Wairarapa, Nelson-Marlborough, West Coast and Southern DHBs. South Canterbury was included in Canterbury DHB's data.
Reasons for not being able to provide this information included systems not collating the data and time constraints.
Canterbury DHB executive director of planning, funding and support Carolyn Gullery said EDs across the country were under a lot of pressure.
In Canterbury, a lot of GPs were referring patients straight to ED if they thought they might have cancer and this is mainly due to their lack of diagnostic testing such as CT scans, Gullery said.
"Allowing GPs to have access to diagnostic testing would help to relieve some of this pressure in ED," Gullery said.
Another problem was patients using ED as their after-hours provider because they couldn't access a GP, Gullery said.
She said often this came down to three factors regarding availability: GPs not being open outside of normal business hours, cost, and patients' perception of availability.
Earlier this year Ian Bissett, a professor at the University of Auckland and consultant surgeon at Auckland DHB, spoke to the Herald about a study he had been a part of looking into the inequalities in bowel cancer surgery.
The number of people presenting to emergency departments with undiagnosed bowel cancer varied between each DHB from 15 to 35 per cent.
He said patients diagnosed at ED would often have a later stage of cancer, some requiring emergency surgery which meant higher chance of death.
If symptoms – such as blood in the bowel, abdominal pain or a lump in the stomach were picked up earlier then emergency presentations would drop, Bissett said.
Surge in complaints against GPs
The Health and Disability Commission (HDC), a powerful health watchdog, investigated the problem of delayed cancer diagnosis in a revealing 2015 report.
It showed 243 complaints were made against GPs in relation to a delayed diagnosis of cancer between 2004 and 2013. The number of these complaints per year was increasing significantly with eight made in 2004 to 43 in 2013.
In the report, Health and Disability Commissioner Anthony Hill said this increase should be interpreted with caution.
He said it was likely to reflect the increasing profile of HDC, the improved accessibility of complaints processes, and an increasing knowledge among the public of consumer rights.
These delays were most common for bowel and lung cancer with people waiting up to nine months for a diagnosis. The reason for this was often due to non-specific symptoms making them difficult to diagnose.
Complaints about delayed diagnosis of breast cancer were found to be less common and involved shorter delays.
Hill said one of the reasons for this was due to New Zealand's national screening programme for breast cancer, which meant patients were skipping the GP stage.
The most common reasons for delays were non-specific or uncommon symptoms, poor communication with DHBs, life-saving referrals not being made, inappropriate reliance on negative test results, and the GP failing to take, review or consider relevant patient history adequately.
Hill gave a list of recommendations for GPs in a bid to reduce the number of missed and delayed diagnoses of cancer. They included:
• Undertaking clinically indicated examinations and tests.
• Examining patients in the context of their past history.
• Ensuring comprehensive documentation is kept.
• Being aware of limitations of diagnostic testing (e.g. false negative rates).
• Considering all clinically relevant differential diagnoses.
• Continuing to hold a suspicion for cancer despite co-morbidities.
• Not treating symptoms in isolation.
• Providing safety-netting advice to patients.
• Having robust follow-up systems.
• Advocating for patients in the secondary care system.
Since the report was released Hill said GPs had taken the advice seriously and he believed it was being followed.
"The report was supported by the RNZCGP, the ministry, and was widely dispersed throughout the health system."
While complaints were still fairly consistent that was more to do with the fact GPs see millions of different consults every year in that original diagnostic space and that can be extremely complex.
He said it was important that there was diligence in assessing those difficult presentations and when good care was not delivered that was learnt from - and the HDC was one response to that.
All complaints made to the HDC are assessed by the commissioner but only around 4 per cent proceed to a formal investigation.
Hill said his office received hundreds of complaints and each one was carefully assessed.
Some people just wanted to be heard and often that was all they could be given, he said.
The Herald reviewed all decisions relating to failure in cancer care that were formally investigated between February 2004 and December 2018.
It showed 38 of the 98 complaints were made against GPs for failing to follow up, refer, examine, document, treat or properly inform the patient.
Cancer sufferers were also lodging complaints against hospital specialists - including radiologists, surgeons and others - for similar errors to GPs.
Others related to system errors or rest home care neglect.
The most common breach was GPs failing to do a clinical examination or appropriate testing. Failures to refer and follow up were also common.
Some breaches included doctors not documenting crucial details about a patient, for example their family history. Others were for not telling the patient important information such as their test results.
After nearly every investigation, doctors at fault were advised to make a formal apology to their patient. If the patient had died the apology was to be made to the family.
Often HDC referred the case to the Medical Council or the appropriate college such as the Royal New Zealand College of General Practitioners for educational purposes.
Sometimes a recommendation was made to the Medical Council for a competence review.
One example was a GP who didn't follow up on a woman's ultrasound report. A year later the woman was urgently referred and was told she had stage four endometrial cancer.
Only three of the 98 investigations ended with the doctor paying a fine. One was a radiologist who misread a biopsy which resulted in the patient getting unnecessary invasive tongue cancer surgery. The radiologist was fined $5000 and referred to the Health Practitioners Disciplinary Tribunal (HPDT).
Hill said the small number of doctors getting fined or referred to the tribunal was not surprising as the HPDT was only used for major departures of professional care.
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Hill's advice to patients unhappy with their treatment:
• Make sure you attend follow-up appointments.
• Report all symptoms to the GP.
• Proactively follow up on test results and referrals.
The advice nearly all patients spoken to by the Herald gave was if you think something is wrong with you, get a second opinion.
Health advocates agreed saying "you know your own body better than any doctor and if something is wrong make sure you get to the bottom of it".
CLIFFORD'S STORY: 'Always get a second opinion'
Whangarei father Clifford Subritzky was told by his doctor his sickness couldn't be cancer - if it was he'd be dead.
More than 18 months later, it turns out it was cancer - aggressive and now terminal.
The 42-year-old doesn't know how long he has left and lives each day like it's his last.
"When we found out it was cancer we were just in shock because we'd been told it couldn't be and now it was," said Clifford's wife Reanne.
She says her husband had been misdiagnosed on multiple occasions and the long waits had been "just cruel".
When he first visited his doctor in June 2016 he complained of abdomen and groin pain telling his doctor he was struggling to sleep because of it and his only relief was to go to the toilet.
"He told the doctor he thought it could be cancer but the doctor said it wasn't and he would be dead if it was," Reanne said.
Instead, the doctor believed it was kidney stones and sent Clifford for a CT scan and a urine test – all came back clear and no follow up was made.
He battled through the pain and then a year later they moved house and signed up to a new medical centre.
Feeling low and tired, he thought he had depression. After a quick online test, his doctor diagnosed him with moderate depression, prescribed him with suitable medication and offered counselling. The doctor advised a follow up within four weeks.
Clifford went back to his doctor as his symptoms had worsened.
He saw the same doctor and this time an urgent referral was made for a colonoscopy. It was then he discovered a large obstructing bowel mass.
"We were told it was most likely cancer but he needed a biopsy to confirm," Reanne said.
Because it was close to Christmas, he had to wait two weeks for an MRI and CT scan.
He was then booked in for surgery to get a bowel bag before he was able to get radiation privately nearly two months later.
Since then, he's had two more surgeries and been on chemotherapy. In December he was told by doctors nothing more could be done.
"We haven't been told yet how long he has to live – he is going to have another scan in June when we get back from our family holiday in Fiji," Reanne said.
She said one of the hardest parts had been explaining their horror to their children - aged 5 and 2.
"[Our son] Corey came home from school after they had been campaigning for Daffodil Day. He turned to Clifford and said 'Dad why did you get cancer? ... are you going to die?', it was heartbreaking," she said.
Reanne said the amount of comments he got from health professionals saying he's too young to get bowel cancer was concerning.
She strongly feels there needs to be more awareness out there so that doctors can be sure of what they are telling their patients.
"Also doctors need to listen to what they are telling patients, my advice would always be to get a second opinion."
If Clifford had been diagnosed when he first visited his GP his survival chances would have been much better, Reanne says.
If the GP had just ordered a stool sample or done an examination Clifford might not have been given the death card, she said.
"And we wouldn't have lost nearly two years of our lives together."