Wellington mum forced to pay $30,000 for cancer treatment after public health system let her down

Phil Pennington for RNZ

A Wellington mother of two says she has had to pay over $30,000 in her fight against cancer because the public system let her down.

The woman says trying to get the recommended treatment became so difficult she was forced to go private.

"I had to spend the money in order to survive," said the seasoned health professional, who RNZ has agreed not to name.

"I felt that I didn't have any choice but to fund this. I'm still here to fight and to be here for my children."

Records show the treatment came amid her five-year fight with breast cancer, characterised by delays as the cancer spread.

She was among 52 cases apologised for, over delays.

"I got an apology from the DHB, a letter apologising," the woman, diagnosed aged 45 in 2018, said.

But this did not account for the other hurdles: at one stage she gave up a work contract for surgery, only for the hospital to fail to book the surgery so it had to be pushed back.

Overall, the persistent and biggest problem was securing the best treatment.

"I was trying to navigate which pathway was going to give me the optimal treatment," she said. "Why is this complicated to navigate?"

A form of stereotactic treatment was recommended, but Wellington did not offer it.

Waikato said it was too busy with its own patients, and Auckland never came back when her doctor made inquiries, she said.

"Why are oncologists having to make private reach-outs to individual departments - what if they choose the wrong department?

"Why isn't there a national triage referral centre? Anyone that needs a tertiary-centre-based treatment should be triaged and sent to the nearest available centre."

Centralisation under Te Whatu Ora had made no difference, she said.

After RNZ interviewed the woman, it emerged that Te Whatu Ora - prompted by the Southern district having to cut some cancer services entirely it has so few radiation oncologists - is now looking for the first time at introducing a national system for prioritising cancer treatment.

That comes too late for the Wellington woman.

Seeking redress, but also compensation for the $32,000 or so spent on private stereotactic treatment, she became the first person to present at the ethics advisory group in the Wellington district.

A doctor had questioned why she was seeking prioritisation over other patients.

"At no point have I asked for prioritisation over other patients but I am as entitled as other patients to receive equitable care. And what has happened to me is inequitable - Health New Zealand is meant to not have this postcode lottery."

Her complaints are inching along.

"I've used some of my savings and you know, had a bit of support, and there's the mortgage. I don't have a dishwasher... Some of the money I put aside for my kid's education has all been put into fighting for my life, basically."

Te Whatu Ora's Wellington district said it was reviewing her case, but could not comment more without breaching privacy.

It "recognises that it can be distressing for patients who experience delays or face challenges when using our services, and we sympathise with them for their experience", acting chief medical officer Sarah Jackson said in a statement.

It was finalising a review of its breast screen central service that was launched last year, she added.

The Wellington woman said if she had been ignorant, she would have settled for standard radiation treatment at Wellington - and the patchy system would have settled for that, too.

"Why are we throwing people on the scrap heap?" she asked.

It was ironic the health system was spending thousands trying to recruit health professionals, when she was one of those professionals, and struggled to survive.

"I'm just more and more baffled as to how, how wildly ineffective and poorly set up the health system is around referral pathways, advocacy and coordination of patient care.

"I can see the system's failures affecting my care, and so I'm aware of it. And that is hard as well.

"I want to try and nip this in the bud so that I can have good quality of life and be there for my children, raise my children and be the fit and healthiest mother that I can be."

RNZ