There's little worse in life than having a seriously ill child - it's stressful in every way possible - including financially.
If you live far from a hospital or have to travel there frequently you're eligible for national travel assistance.
Administered by Te Whatu Ora, it reimburses travel and accommodation costs. But this scheme hasn't been updated since 2009, is seriously out of date, and is actually putting more pressure on families at breaking point.
Tae Roberston was finishing his school exams last year when he became really unwell.
"I just started coughing… basically until I puked. Then passed out, just couldn't breathe at all… heartbeat was beating at about 150 beats a minute," Tae said.
He had an x-ray of his chest which found a huge tumour.
"It got all of my lung," Tae said. "It just felt like I was choking."
Tae lives in Dargaville which is over an hour away from Whangarei Hospital and an even longer drive every time he has treatment at Starship in Auckland.
His dad, Justin Robertson, said the long drives can be "quite tortuous".
"Normally, it's in the middle of the night because he's developed a fever or something's going wrong and so, you know, you're rushing over there," Justin said.
"The whole time hoping he's going to get there before he throws up, before he gets worse or something like that."
The National Travel Assistance Scheme allows people who have to travel for treatment to claim mileage at 28-cents a kilometre and accommodation at $100 per night. It hasn't been updated since 2009 and doesn't come close to covering costs.
Justin said their expenditure on fuel is around $4000. However, through the scheme, they have received only $900 back.
The forms to receive the financial assistance are out of date too.
"So you've got to take it up to the reception and ask them to date it and say whether it's a return trip or you're arriving or going back and they've got to stamp it. And if you don't get it done, you don't get paid for it," Justin said.
"You're off to see the specialist, the last thing on your mind is 'I've got to get that stamped you know'.
"And believe it or not, you still have to send this by post."
Justin said the scheme needs to "get with the programme".
"You shouldn't have to be stressing about, can I get enough petrol to go to Auckland to, to do the treatment? That should be the very last thing you should be thinking about," Justin said.
"There's nothing more important than your child's health."
But some families don't qualify for the accommodation assistance because they live too close to the hospital - despite still being over an hour's drive.
Richard Blair's four-year-old daughter Addison has a type of leukemia. They live in Waiuku on the outskirts of Auckland.
It's about 70km away from Starship Hospital which is close enough that they don't qualify for accommodation. But Blair said it takes one hour to get to the hospital with no traffic but anywhere up to three hours with traffic.
"We would have to travel up three days a week. Generally, start at 7.30am and sometimes we wouldn't be out til 7.30pm or we're out at 5pm, right on rush hour. So two and a half hours home. After potentially, some days, four doses of chemotherapy, so she's vomiting up all the way home," Blair said.
"I'm having to hand over sick buckets to a little four-year-old girl holding her own sick bucket. Emptying it out as we travel down in traffic because there's nowhere you can put it and just just trying to keep her comfortable for the journey home.
"It was a form of hell."
Blair said when he is having to carry his daughter out of the hospital each day because she's too sick to walk, the last thing he's thinking of is filling out the National Travel Assistance Scheme form.
He said they receive 28 cents a km which works out to be $17.50 per trip - which only covers a third of the way.
"We need change… It's not sustainable for families. They're going through the worst journey of their life, you could never imagine it," Blair said.
"It can break you."
Te Whatu Ora director Rachel Haggerty said the current system is "inadequate" and "has to change".
"Different people travel to different places and we need to make sure that what we're paying reflects what it's going to cost and how we doing that, are we actually paying directly rather than paying the individual through a reimbursement model," she said.
"There's all sorts of things that we can look at, things like petrol vouchers, and some of those things will take a lot of time lags for people to get money back."
Haggerty said they are also looking at whether they can make the process of applying for the NTA easier by making the application process electronic and done from home.
She said over the next several months, Te Whatu Ora is doing the work that's needed to be done and will look at rolling out a new program in 2024.
"[It's] really important to people [to make] sure that no matter who you are and where you live, you can get the treatment that you need," Haggerty said.
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