Report ▪ September 2023

Thousands of sick Kiwis can’t get care, problem getting worse

We have previously covered the agonising wait times that Kiwis are enduring for appointments, tests and treatments in our public health system. But there is another, even more disturbing problem: tens of thousands of patients can’t even get their foot in the door.

Unmet health needs are not a new problem. A 2017 study found that 9% of respondents had an unmet secondary healthcare need — indicating that hundreds of thousands of people are not receiving the specialist care they need.¹

But many of these people simply choose not to ask for care. Often they prefer to live with a relatively minor ailment than bother trying to get treatment, knowing that it could take months or years.

The real problem is that when people do ask for treatment, they are often turned away. They go to their GP, who refers to them to a specialist for assessment.

And then the specialist declines the referral.

Specialist assessment referrals can be declined for several reasons,² but the most concerning is when patients are turned away because their DHBs simply don’t have the facilities or staff available to help them.

In 2018, over 32,000 Kiwis who asked for a first specialist assessment (FSA) had to be turned away because DHBs were over their capacity thresholds.³

In the two years from September 2018 to 2020, the Counties Manukau DHB declined more than 61,000 GP referrals.⁴
From January 2019 to October 2021, the Canterbury DHB declined over 20,000 FSAs, as well as 28 neurosurgeries due to insufficient capacity.⁵
Within the same period, the Northland DHB declined 8,409 GP referrals.⁶

It is difficult to get a clear picture of how bad the situation is, because DHB records do not always specify why referrals are declined. Still, these numbers paint a picture of the level of unmet need.

The terrible toll of delayed appointments

For patients who don’t have health insurance or financial resources to go private, getting declined by the system — even for only a while — can have severe consequences. It leads to emergency hospitalisations, costlier long-term treatments, longer recovery times — and permanent health conditions.

Such was the case with Koby Brown, a dairy farmer in his 20s, who lost sight in one eye after treatment delays.⁷

Koby was diagnosed with glaucoma in 2014, when he was only 20 years old. Treatment and timely monitoring could have kept him from going blind.

He was scheduled for a follow-up after six months. Instead, his next appointment happened after a year. By then, it was too late. His optic nerve was already damaged. He will never see out of that eye again.

Or take Jane, who had been suffering from infections and gall stones for three years. Her gall bladder surgery, which was finally scheduled for November 2021, was among over 13,000 surgeries cancelled between August 2021 and June 2022.⁸

She finally had her surgery after being admitted through the emergency department. The following day, she had to go through an emergency procedure to clear blocked bile ducts.

Jane was traumatised after being through so much pain for so long.

This kind of chronic pain, along with the uncertainty of when their suffering will end, takes a terrible toll on patients. Their quality of life rapidly deteriorates, and to get by, some rely heavily on painkillers — which can be addictive.

Others struggle with suicidal thoughts. Among them, 22-year-old Sophia, who spent over 10 months waiting for patella realignment surgery.⁹

Despite taking painkillers, Sophia was in constant pain, and suffered almost weekly knee dislocations due to a genetic connective tissue disorder.

She had been so excited when she was finally booked for surgery in October 2021 — and cried so much when it was cancelled the day before, due to lack of beds.

On top of chronic pain, possible complications, and worsening health conditions, patients often end up broke because they can’t work.

Among them was Barry Adams, a 35-year-old IT business analyst who suffered a prolapsed disc in his upper spine after an accident in 2014. He had been experiencing “blinding headaches” and neck pain, among other symptoms.¹⁰

But he had been declined surgery twice because he did not meet the Canterbury DHB’s criteria. Barry is scathing:

How can a DHB actively promote disability by saying to people like me “you need surgery, but you don’t qualify and you’re never going to get it”? If you are doing that you are promoting disability.

In April 2017, Barry was forced to take a break from work, and then switched to working part-time.

Needless deaths from delayed diagnoses

For many other Kiwis, the situation is even more dire.

Cancer is New Zealand’s number one killer. Each year, over 25,000 Kiwis are diagnosed.¹¹

But not all diagnoses happen when they should. With so many appointments being declined, it is inevitable that many cancer cases are not caught early enough.

The earlier cancer is diagnosed, the better your chances of survival. A late diagnosis can be a death sentence.

“If patients are waiting too long for treatment there is a risk of psychological harm, cancer recurrence and potentially even death,” says Melissa James, radiation oncologist and committee member of the Royal Australian and New Zealand College of Radiologists.¹²

This is the tragic reality faced by patients who have paid the price for declined referrals and delayed diagnoses.

Among them, Fiona Cullen, a 39-year-old first-time mother, and Jeremy MacGillivray, a 41-year-old father of two young kids. Both Fiona and Jeremy were declined colonoscopies — only to be diagnosed with bowel cancer too late to save their lives.

Fiona was only 37 when she started showing symptoms of bowel cancer. She was referred for a colonoscopy after she started bleeding from her bowels. But because bowel cancer only commonly affects people over 50,¹³ her GP’s referrals were declined…twice.¹⁴

Bowel cancer is the second leading cause of cancer deaths in the country, claiming about 1,200 lives each year.¹⁵ If detected and treated early, it can be curable. Patients who are diagnosed and treated while the cancer is at an early stage have a 90% long-term survival rate.¹⁶

Fiona’s referrals were declined for 18 months. During this time, she fell pregnant with her first child.

By the time her referral was finally accepted, and she was diagnosed, she was 30 weeks pregnant. Her firstborn had to be delivered prematurely so she could begin treatment.

But by this point, all she could do was buy a little time. Fiona passed away in 2020, leaving behind her little boy, Morgan.

Jeremy MacGillivray went through a similar ordeal. His grandfather had died from bowel cancer, and so in 2017, after experiencing stomach cramps, he requested to be checked for the disease himself. This request was declined because he lacked further symptoms, he was young, and he did not have parents or siblings with the disease.¹⁷

He was told he had diverticulitis, and given antibiotics.

When his cramps recurred 18 months later, Jeremy finally underwent a CT scan and colonoscopy. This time he was correctly diagnosed with bowel cancer, and had to have emergency surgery.

He was then told he needed chemotherapy — but this could only be booked after his oncologist consultation. The earliest this could take place was in 12 weeks.

Jeremy’s family moved to Christchurch for six months, so he could get publicly funded treatment quicker — in less than 4 weeks.

But in August 2019, a new mass was found in his peritoneum. His cancer had progressed to stage 4.

Desperate, his family shelled out $75,000 for private surgery, rather than wait for a public health system so slow that he might be dead before he could get treatment.

Sadly in 2020 more cancer was found in his body. Jeremy knew the odds were stacked against him, but he squeezed out every day he could with his family. He passed away in 2021.

Both his death, and Fiona’s, could easily have been avoided if their specialist referrals had been accepted instead of declined.

It’s only getting worse — but there is a way to protect yourself

New Zealand’s public health system capacity is increasingly falling behind our growing population and health needs.

This leaves many Kiwis wondering if they will get timely specialist care when they need it — or will they be among the thousands declined by the public health system, or forced to wait who knows how long?

Will they have to drain their savings, or go into debt, to pay for private treatment?

With such concerns, many are now turning to health insurance to avoid delays in diagnosis and treatment should they have a major health crisis. Insurance coverage gives them peace of mind, knowing that they have other options aside from the flaky public health system. Moreover, they can get timely, quality care without exhausting their family’s finances.

But finding the right cover is not easy. Comparing policy options is time-consuming, and requires a solid grasp of the ins and outs of insurance. The cost of making the wrong choice is high. Fortunately, specialist help is available to identify the medical cover that will fit your particular needs and finances — entirely free. We partner with Policywise to offer this option with no hidden costs or catches.

The terrible toll of delayed appointments

Needless deaths from delayed diagnoses

It’s only getting worse — but there is a way to protect yourself

Footnotes