Cancer costing lives: What needs to change

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.

Close to 800 New Zealanders who die of cancer every year could be saved if we had Australia's survival rates.

Excessive waiting lists, inequalities in care, shortages of specialists and resource, a lack of funded life-saving drugs, flawed performance reporting and insufficient systems to hold DHBs and GPs to account are costing lives.

This week, more than 12,000 New Zealanders have signed a petition calling on the Government to set up a national cancer agency – something backed by numerous health advocates.

The agency would run independently but would be funded by the Government.

Health advocates told the Herald the country needs a cancer plan free from political interference to set clear targets to hold the Government and DHBs to account.

Cancer Society of New Zealand medical director Chris Jackson said there is no question we can do better.

"While we do better than some countries, we currently have worse survival rates than our cousins in Australia and Canada."

Health Minister David Clark said he could see many examples where our cancer care wasn't good enough.

Health Minister David Clark. Photo / File

"I think we can do better, particularly for Māori and Pacific people, which is why I've asked the Ministry of Health to work on a new cancer action plan."

Clark said New Zealanders should expect a high standard of care.

"It's not acceptable when we fall short of this and it's understandably very distressing for patients and families.

"It's important clinicians and others working in our health services learn from these incidents to prevent them recurring."

However, despite Labour promising $10 million, pre-election, to establish a National Cancer Agency, and another $10m to get work under way, this hasn't happened yet. Clark wouldn't comment on whether this is still on the books. He also couldn't say whether any new money had been allocated towards tackling cancer.

"I'm not making any Budget announcements today," he said.

Jackson said New Zealand should be following Canada's strategy of tackling cancer because they have "dramatically" improved survival rates over the past 10 years – and they have a public-funded system similar to ours.

Cancer Society of New Zealand medical director Chris Jackson. Photo / Supplied

Canadian Partnership Against Cancer executive director Rami Rahal, who visited New Zealand earlier this year, said Canada's national survival rates had improved dramatically since their Government introduced the CPAC agency in 2006.

A 2018 report, conducted by the CPAC, found survival rates for bowel cancer had increased steadily with more than 2700 more Canadians surviving five years after being diagnosed, compared with 15 years ago.

Much of this is due to the country's widespread screening programme that is catching cancers earlier and often before they develop.

Overall, the rates at which Canadians are dying from prostate, lung, breast and bowel cancer have decreased. Improvements came only after effective treatments were funded, increased access to screening for cancers - such as breast and bowel - and successful prevention initiatives such as anti-smoking campaigns were introduced.

But all successful outcomes stemmed from measuring and reporting the performance of cancer systems across Canada, Rahal said.

"It allows us to understand gaps and areas where more focused attention is required, and allows us to identify and spread effective practices that can improve cancer care for Canadians."

One way they did this was increasing the use of patient reported outcome tools across the country to assess patients' symptoms and level of distresses. This helped ensuring follow-up appointments were being made and the patients' emotional concerns were addressed as well as physical.

Dozens of cancer-specific targets have also been introduced in Canada such as ensuring 90 per cent of women with abnormal mammogram findings receive a diagnosis, cancer or not, within five weeks.

The result of that showed an increase from 82.7 per cent to 85.8 per cent in a two-year period, though they admitted work was still being done to keep improving performance of this target.

Another part of the success is having a sufficient number of specialists and resource. This is some of what will need to be improved in order to replicate the successes here in New Zealand.

Many New Zealand health professionals had echoed the need for better and more in-depth "honest" reporting.

Jackson said currently only 15 per cent of cancer patients were being picked up by the Government's Faster Cancer Treatments targets.

"Separate targets were 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 are often harder to treat due to the amount of testing involved beforehand to ensure the patient was fit for surgery.

Bowel Cancer New Zealand spokeswoman Mary Bradley. Photo / Supplied

Other suggestions from cancer support groups to improve early detection and better access to treatment included:

• More emphasis needed to ensure New Zealand has an adequate workforce to keep up with growing demand - Bowel Cancer NZ spokeswoman Mary Bradley.

• GPs need to prioritise upskilling in cancer care - Prostate New Zealand chief executive Graeme Woodside.

• Equal funding is needed for all cancer types. At the moment melanoma patients get Keytruda funded and lung cancer patients don't - Lung Foundation chief executive Philip Hope.

• Breast cancer patients desperately need access to medicines to extend their lives – Breast Cancer Aotearoa Coalition chairwoman Libby Burgess.

Whanganui general practitioner Dr John McMenamin says we need to make cancer-specific SEAs (significant event analysis) mandatory.

This involves individual clinics looking at every cancer diagnosis and those missed to identify any potential need for improvement. While some practices are already doing this, it is not used widespread.

An example would be a patient who presents with a number of vague symptoms, the GP makes a referral to see a specialist, but there is a long wait for an appointment.

McMenamin said a CT scan could also have been ordered to help fast-track the appointment with the specialist.

For Canterbury DHB, identifying reasons patients were experiencing delays in treatment led to an introduction of a quicker referral process. After a referral from a GP the patients might have a specialist consultation and then several referrals can be 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," Canterbury DHB executive director of planning, funding and support Carolyn Gullery said.

Initiatives like these need to be rolled out on a national level and regular reporting needs to be done at every level to ensure standards are being met.

However, Jackson said none of these improvements could be effectively enforced without government funding.

He said there was no point creating an agency without financial commitment from the Government.

For now it's a waiting game. Clark won't be making any announcement about the Ministry of Health's cancer control plan until June.

A story of hope:

Louise Clark at her home near Hamilton. She was diagnosed with a brain tumour and operated on within three days at Waikato Hospital. Photo / Natalie Akoorie

Finding out you have cancer is terrifying.

Knowing you have the best care possible to fight the deadly disease is reassurance.

For Louise Clark, discovering she had an aggressive brain tumour was daunting and "completely unexpected".

But despite it all she describes her treatment from the New Zealand public health system as "exceptional".

She is unsure whether she'd still be here if she hadn't received the high standard of care she did.

The Hamilton mum-of-five wants New Zealanders to know there's hope.

And her story is proof of that.

Late last year, she started getting severe headaches, unlike any she'd had before, and her husband noticed her behaviour had been different.

Worried about her symptoms, the 69-year-old and her husband visited her GP straight away.

"I was lucky I had a GP who I'd been going to for years and who knew me. She knew that if I was complaining something must be wrong."

The GP listened to her symptoms and told her to immediately go to Waikato Hospital's emergency department and to "be persistent".

She was seen by a doctor at ED within two hours, had a CT and MRI scan done and was diagnosed with a brain tumour that day.

Two days later, she had surgery to remove the cancerous tumour and it was doctors discovered she was stage four. Six weeks later, after her wounds had healed from the major operation, she had a meeting with an oncologist and they decided one month of daily chemotherapy and radiation was her best chance at survival.

Several months on and, although she has been told by her doctors her chance of surviving the next five years is only about 5 per cent, she continues to fight.

"Given the high standard of care I've received I want to be that 5 per cent that survives."

But it wasn't just her smooth transition through the system that made the difference, it was also the little things.

"When I get radiation there's a mask I have to wear to keep my head still and one of the nurses noticed I was uncomfortable so she fetched a pillow for me to rest my legs on.

"Now, every time I go there's a pillow on my chair. The nurse had obviously left a note on my file.

"Knowing someone went to that much effort to make me feel comfortable almost brought a tear to my eye."

Looking back on the experience she had received from her medical team so far, she says it was reassuring to know she was given every chance possible to fight.

"I've found all the hospital staff and my GP very caring and professional. It's sad reading these stories and finding out not everyone gets that."

The series

Monday: ACC payouts for misdiagnosed victims
Tuesday: Failings at a primary care level
Wednesday: Lengthy treatment wait times
Thursday: The inequalities based on age, income and location