Young Waikato mum with bowel cancer spends house deposit on private care

By Ruth Hill of RNZ

A young Waikato woman with stage 3 bowel cancer has spent more than $20,000 on private diagnosis and treatment, which she estimates has saved her about seven months in delays.

But she fears other patients are “not so lucky”.

The 38-year-old mother-of-two was diagnosed in October, after paying $2000 for a private colonoscopy to beat the five to six-month delay in the public system.

After being referred back to Waikato Hospital, she was told it would be a four-week wait for MRI and CT scans to determine how far it had spread.

“When you’ve just found out you’ve got cancer, that’s like an eternity.”

So once again she paid out-of-pocket for an MRI, which showed cancer had already spread to her lymph nodes.

As a result, she got her first specialist appointment in the public system within two weeks - but was told it was going to be up to eight weeks before she could start chemotherapy.

So she consulted a private oncologist.

“I said to him: ‘In your opinion is there a risk in waiting? Because it’s expensive’. And he was really frank and said: ‘Yes, because every day your cancer cells are multiplying’.

“He was just being honest - there is a risk and the sooner you get the treatment the better. But there was just no way to do that in the public system.”

She consulted a private oncologist after being told there would be a seven-week wait until she could start chemotherapy. Photo / File

After starting private chemotherapy, she finally received her first treatment in the public system - under the same oncologist - on December 29, more than two months after being diagnosed.

Next came radiation therapy, but then she faced further delays for surgery.

According to her original treatment plan, she should have had the operation 10 weeks after finishing radiation therapy.

Having worked all through chemotherapy and radiation, she finished work in anticipation of needing recovery time and asked her sister to help care for the children.

But that date came and went without hearing anything.

Her husband “started calling every day” and she finally got an appointment for a clinic day, at which the specialist confirmed she needed surgery and would now go on the waiting list.

“And I was like: ‘What? Shouldn’t I have been the waiting list already, at least 10 weeks ago?’.”

Her operation date was changed twice - once due to the junior doctors’ strike - before finally going ahead on June 24.

“I felt so disappointed in this system that I had grown up believing in. You know: ‘We’re so lucky here, it’s free healthcare, we all pay taxes towards this brilliant system, which means that we’ll always be taken care of if we get sick’. But I felt this just wasn’t the case.

“It was almost like a sense of betrayal, like I was an idiot for thinking if I get sick the health system is going to be there for me.

“When I’ve actually got the care, it’s been great, the colorectal nurses in particular are just amazing. But it’s the delays.”

She said she would have have been better off in her husband’s homeland of the United States, “where at least you know you have to have health insurance”.

She now faces more chemotherapy, and another operation to rejoin her bowel.

Waikato Hospital in Hamilton. Photo / Alan Gibson

Best practice is for that to happen within three to six months to minimise the risk of complications - but she has been told to expect to wait 12 to 18 months.

After already spending about $22,000 on her care so far, she is considering raising money to get that done privately too.

“We were saving for a house deposit, and my dad helped.

“We’re privileged to have had the resources to do this. But how many people are just getting stuck?”

Health New Zealand admitted there were delays for colonoscopies and first specialist appointments at Waikato Hospital last year.

In a written statement, Waikato group director of operations Michelle Sutherland acknowledged this had “an impact” on patients.

“This patient chose to go private so we cannot ascertain what the wait time for diagnosis and treatment would have been.”

New Zealand has one of the highest rates of bowel cancer in the world, with more than 3000 people diagnosed every year and 1200 dying - but experts say the resources to diagnose and treat them are not keeping up.

Bowel Cancer New Zealand medical advisor Professor Frank Frizelle said those with private health insurance - or money - had an advantage, even in the public system.

“Without doubt, those who are the better educated, those who are able to engage in systems are inevitably better served than those who sit back and let things happen, which is a terrible thing to happen.”

The colorectal surgeon said bowel cancer rates in those under 50 had been rising 26% a decade - 36% for Māori.

Pharmac’s decision this month to fund two more bowel cancer drugs was welcome news.

However, it was the basics - colonoscopies and surgery - where more resource was needed.

“It’s all very nice to have something exotic and extra for the small percentage for whom it matters.

“But for the vast majority, they just need ‘the barn door stuff’. And that’s what we’re missing out on.”

Providing faster cancer treatment is one of the government’s Five National Health Targets.

Te Whatu Ora said it was “working toward treating patients with a high suspicion of cancer within 62 days of referral, and within 31 days of a decision to treat them”.

Initiatives include a National Cancer Network, streamlining access to radiology and diagnostics and national workforce planning. - RNZ