Health system reforms 'taking far too long': cancer patient advocates
Cancer patients are struggling with uneven medical care as Te Whatu Ora edges towards setting up national clinical networks to tackle the public health postcode lottery.
An Ōamaru brain cancer patient is receiving their radiotherapy in Hamilton, away from whānau, with some of the costs met, but having to pay up for others.
A Dunedin woman's tumour has grown so rapidly while she waited futilely to get a radiotherapy slot in another region, that she now has to have another surgery.
A Wellington woman RNZ won't name, incurred a $35,000 bill to go private for specialised care not available locally - only to find, now it is.
"If I had been diagnosed this year ... I would have had this publicly funded at Wellington hospital," the woman said.
Last year, a patchy, inconclusive hunt to find her the treatment elsewhere dragged on to the point she went private "in order to survive".
"We acknowledge that we have fallen short of your expectations," Wellington health district told her this month - while at the same time rejecting her months-long campaign to get her costs reimbursed.
As the health and financial damages mount, such as the costs to patients' whānau when they travel away for treatment, Te Whatu Ora promised it would take a step "critical to delivering a better, fairer health system for all people in all communities".
It is setting up a host of new networks of expert clinicians to set standards and models of care.
After about a year talking about this, last week it named eight clinical leaders of four networks - for stroke, trauma, cardiac and renal. Though just what they would be doing and when was less clear.
Cancer and radiation oncology were scheduled for a second wave, for which they were still trying to recruit leaders.
'Cancer patients don't have that time to wait'
"It is taking far too long," said Chris Tse of the national Brain Tumour Support Trust.
"We need to have these other pathways in place so they can be treated."
But consistency was hard to find.
Wellington's health bosses are now using the case of the woman who said she "got lost" in the public hospital maze, and who it would not reimburse, to argue to Te Whatu Ora that it should set up a national pathway to help people get the stereotactic ablative body radiation she could not get in her home town.
Te Whatu Ora told RNZ it had not set the pathway up yet, or national guidelines - and that this was a job for the national clinical network on oncology once it was set up.
Doctors tried to do this "several years ago, but it was not progressed due to workforce pressures and Covid-19", it said.
The Wellington woman said such pressures would keep on derailing fairer care, and a national network would only work if it had the teeth to force hospitals to cooperate.
The southern district based around Dunedin had the toughest end of the stick and was dealing with the country's worst shortage of radiation oncologists.
It needed national help fast, cancer patient advocate Melissa Vining said.
But instead, its competent local leaders who had been shorn of their previous authority, were having to wait for the big decisions on the slow centralised system.
"Cancer patients don't have that time to wait" for the national clinical network, said Vining, whose husband died of cancer.
The health reforms promised great things but "the pace at which it's moving is incredibly disappointing and leaving patients suffering", she said.
At the coalface, stopgap measures using locums had recently cut wait lists to their shortest in ages, she said.
"It's the best it has been."
However, she feared this could not last because Dunedin faced losing four trainee oncologists at Christmas, due to the lack of seniors to train them.
The latest cancer wait times nationally were hovering at about 80 to 85 percent for getting to see a specialist in a month, and 75 to 80 percent getting actual treatment within the target 62 days. Both should be above 90 percent.
A national network that sets national pathways would be expected to cut the wait times.
"There needs to be some teeth behind this," said the Wellington woman.
"It does rely on all the facilities to pull together to share their resources for the benefit of everybody in New Zealand.
'It should be unacceptable for a tertiary centre [hospital] to say, 'We're too busy with our own patients, we can't accept yours'."
Main image (File photo/RNZ /Dan Cook)