Inside the hidden waiting list no-one reports
Saturday, 9 May 2026
Every quarter, Health NZ tracks targets for specialist assessment and surgery waits. But there’s a hidden waiting list no-one reports - the patients turned away at the door. New data shows they include thousands of children needing help for serious developmental issues, where delay can be critical. Nikki Macdonald investigates.
When family doctor Bryan Betty submitted referral number four, he hit the jackpot.
After two years of worsening symptoms, his patient was finally accepted to see an ear, nose and throat specialist.
But you won’t find those three earlier rejections on any published waiting list data. For the purposes of hospital performance targets, that patient - and thousands of others bumped back to their GP before they even reach first base - do not exist.
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A new snapshot of data from the few places that actually track referral rejections shows 66,575 were turned down for first specialist assessments in 2025 in five regions alone.
Among them were more than 6000 children - a symptom of an explosion of neuro-developmental problems that have seen paediatric wait lists double since 2019.
Betty, who is chair of General Practice NZ, says being told you’re not bad enough to even get onto an assessment waiting list is distressing for patients. And it leaves already stretched GPs trying to manage escalating pain or problems they don’t have the time, expertise, or funding for.
“It can be really quite traumatising for the patient, and for family as well, who may have to end up providing more support. And it can actually be really demanding on the GP.”
But the bigger problem is that, as long as those rejections remain untracked, there’s no true picture of how many Kiwis actually need specialist help.
“That becomes really, really important, because if we don’t know the amount of patients who are not even getting to see a specialist, then we don't know the size of what we call unmet need in the community. Therefore, how can we plan ahead in terms of the amount of services we actually need to deliver care to the country?”
The hidden harm
The importance of tracking that hidden need was not lost on former health minister, and GP, Jonathan Coleman. Back in 2016, he announced a National Patient Flow Project, to track referral declines, and their reasons.
“It’s important to provide transparency,” he said.
But that project has been scrapped. Health NZ says “due to the complexity of the programme, it was disestablished in 2018 and decommissioned in 2025”.
Its replacement, the National Referrals Dataset, will report declined referrals, and should be ready by December, Health NZ says.
However, an Official Information Act request by The Post for data on declined referrals around the country was rejected as too difficult to compile.
Health NZ did provide rejections by specialty for five regions - Nelson Marlborough, West Coast, Canterbury, South Canterbury and Southern.
The specialties declining the most referrals varied. In Nelson Marlborough and Canterbury, gastroenterology patients topped the list. In South Canterbury, mental health was the biggest rejecter, and in the Southern region, paediatric medicine came out worst.
So there’s still no up-to-date national picture of how many people don’t make it into the specialist system. When researcher Robin Gauld tried to find that out, it took six months.
“It is astonishing that there’s still no capacity to collect and report data centrally,” says the Otago University honorary professor, now based at Australia’s Bond University.
He found that, in 2022, 13.9% of first specialist assessment referrals were declined - up from 11.6% in 2018.
“If you're not a high enough priority, you'll be rejected and sent back to your GP for ongoing management, which in our work, we found is often beyond the scope of GPs. So it's actually really worrying.”
Suffer the little children
When Karli Parsons’ daughter Emelia-Michelle was little, she didn’t show the major tells of autism, but she never laughed or wanted to be touched.
She struggled socially at kindy and by five, Parsons - a teacher - felt she needed a specialist assessment before starting school.
Her GP referred her to Hamilton’s child development centre, but they declined to see her, because Emelia-Michelle wasn’t high enough risk or a danger to other kids.
“It was just a straight ‘no’ … She doesn’t meet the criteria, chuck it in the bin, really.”
A single parent, Parsons scratched together funds for a private assessment. But that kept getting deferred. Nine months went by, and Emelia-Michelle had to start school.
“She came home every day after school just an absolute wreck. She would cry and scream, started harming herself, ripping her hair out, ripping her skin, soiling herself at night.”
Desperate for action, Parsons eventually wrangled a live video assessment by a Kiwi psychologist in the United States, which diagnosed autism spectrum disorder and anxiety, unlocking school support and respite care for Parsons.
But when she recently requested Emelia-Michelle’s medical file, she found no record of the original referral rejection, “which was a bit crap. You didn’t even record that you said no to her”.
Now she’s in a similar situation with her younger daughter, 4-year-old Evie-Paul. Already in specialist paediatric care for physical health problems, including a cleft lip and palate, she was accepted for a neuro-developmental specialist assessment. But a six to nine-month wait has now blown out to possibly one to two years.
So Parsons is again investigating going private.
“I don't take no for an answer where my kids are involved … It's really unfortunate that, in this day and age, it's a nightmare to battle. There's no magic solution to just make it better. They're an absolutely under-resourced, over-capacity system.”
Pressure on paediatric services got so bad it prompted a briefing to Health Minister Simeon Brown last August.
Waiting lists for first specialist assessments (FSAs) and elective treatments had doubled since 2019, the briefing notes. That reflects a global spike in neuro-developmental conditions such as ADHD and autism, and pent-up demand from Covid disruptions.
“Paediatric medicine FSA delivery has consistently lagged behind demand,” the briefing says.
Neuro-developmental problems now make up more than half of all paediatric specialist assessments - up from a third before 2018. And - as Parsons discovered - those assessments can’t be easily outsourced, as only 4% of child health work happens in private practice.
In April 2025, 23,400 children were waiting for specialist assessments and surgery, which includes dental operations and ear, nose and throat. Up to half were waiting longer than the target maximum of four months.
But that doesn’t count children like Emilia-Michelle, who don’t even make it in the door.
“Long waits for children and young people pose significant risks to child health, development, school readiness, education, and family functioning,” the briefing notes.
Or as one Wellington mum puts it, “our whole family is just completely tipped upside down, and none of us are doing that well because of it”.
Her six-year-old consumes ice blocks and Pepsi, when he eats at all. He’s in nappies, can’t go to school and just left the house for the first time in two weeks.
“It’s a very limited life.”
While the couple has managed to see a paediatrician, their first referral to a child mental health specialist was declined, and they’re waiting to hear back on their re-referral.
In the meantime, they and their two older boys tip-toe around.
“We’re just in this holding pattern where no-one will actually help us, and he doesn’t seem to be at crisis point enough for the public system, and yet there’s no-one privately available either.”
Auckland University senior research fellow in child health Cervantée Wild is researching which children are waiting, how long, and how waiting lists and targets work in paediatrics. She hopes the work will give a clearer picture of how children are prioritised, and the impacts of long waits on families.
“Child health services are under significant pressure with huge demand for specialist services …This research examines whether current targets are delivering timely and equitable access to specialist services for children, and at what cost.”
Who decides to accept or reject, and how?
Steve Loftus is arguably one of the lucky ones. At least he saw a specialist, before being turned down for surgery.
The Wairarapa 70-year-old’s hip went in January 2025, and he’s only recently been assessed for a joint replacement. In the meantime, propped up by the max daily dose of pregabalin painkiller, he’s been trying to continue his gardening job and volunteer work for Predator Free NZ.
Now, he’s been told to come back in 12 months. When he watched a mate who’d had a private operation effortlessly unload his ute at the tip, it grated.
“I play with people in the petanque club who are older than I am and who hobble around a lot worse than I do, and I don’t want to get to that stage. I think it’s back to front. They should be doing it when it first appears.”
Depending on your school of thought, referral rejections are either about giving patients an honest steer on likelihood of treatment, or a cynical way to make waiting lists look better.
Health NZ says referrals can be declined because the condition can be safely managed (with guidance) in primary care, because further tests or investigations are needed, or because it doesn’t meet the clinical threshold.
Orthopaedic Association president Chris Hoffman says referrals are assessed by specialists, and the first question is whether surgery is actually needed. While surgeons could previously see patients just to advise on alternative treatments, they no longer have time. So those patients get turned down.
And those who would benefit from surgery get prioritised by how bad they are.
“It’s tough … What we're doing is trying to see the people who are most desperate in need, and make those people who can wait continue to wait. And clearly that's highly frustrating, if continuing to wait means you continue to be in pain, particularly if you're unable to work, if you've got people that are reliant upon you, either as a caregiver or a provider of financial support. So it puts huge pressure on.”
Hoffman says he wasn’t comfortable with the “funding thresholds” that meant telling patients they would benefit from surgery, but there was no capacity to operate on them.
But that’s been less of an issue since the Government began farming out joint replacements to the private sector to reduce waits. Hoffman believes the best way to relieve pressure further is to invest in community healthcare, to keep people well.
“We’re constantly trying to make the ambulance at the bottom of the cliff cope better with the increasing avalanche of care coming over the hill. And I just don’t think we put enough into the primary care space.”
What’s the solution?
A 2025 Health NZ paper on reducing first specialist assessment waits estimated an extra 18,000 assessments a year, costing $9.8 million, would be needed for 85% of assessments to be done within four months.
And assuming more assessments lead to more treatments, they could cost another $70m. Health NZ instead proposed “modernising” the waiting list system, reducing unnecessary appointments.
Health NZ says the number of patients waiting for first specialist assessments has fallen from its February 2025 peak, but “Health NZ remains focused on ensuring more people receive faster access to care”.
GPNZ’s Bryan Betty thinks every patient needing an assessment or treatment should go on the waiting list, however long they might wait, so all that unmet need is clearly visible.
“For me, this is the big, big thing - it’s transparency across the whole system.”
But there is also room for doing things differently, and better.
Some regions are already experimenting with alternatives, including using GPs with advanced skills.
With some patients waiting two years for help with abnormal uterine bleeding, Nelson Bays primary health organisation last year set up a joint triage system, with an expert GP and specialist.
About a third of the patients were then able to be treated in the community - closer to home, and more quickly, says the PHO’s primary care general manager, Charlotte Etheridge. Critically, unlike bouncing patients back to their GP to manage with no extra public funding, the extra work is paid.
“So for us, that’s a win and a big win for the patients … It’s not a secondary or a primary response, it’s a system response.”
The organisation’s medical director, Mapua GP Andre Bonny, says doctors and patients need greater clarity about what waiting lists look like.
And to really measure hidden health problems, you’d need to understand not just how many specialist referrals are being rejected, but also how many patients are not enrolled with a doctor, and how many GPs don’t even bother to refer for conditions they know will be rejected.
“The biggest factor for me, is the declines that don’t even get referred, because everybody knows it’s a complete waste of time. And there’s no measure on that.”
Lyttelton GP Ben Hudson, who is medical director of Canterbury primary health organisation Pegasus Health, says declined referrals are “a symptom of a whole system under strain”.
With Canterbury’s biggest rejecters being gastroenterology, paediatrics and ENT, that could mean patients sent back who need gastroscopy or colonoscopy investigations, children with neuro-developmental problems or patients struggling to sleep.
Staffing, resources and access to surgical theatres can all be limiting factors, he says.
But rejections increase that pressure further, as patients declined specialist help need more GP time, which makes it harder for other patients to get appointments, which increases the number of people overloading hospital emergency departments, Hudson says.
“So we get into this sort of vicious cycle of the whole system straining and unable to meet the needs of this group of patients.”
But he’s not a fan of abandoning referral rejections in favour of never-ending waitlists, just to show the size of the problem.
“I think it’s more honest to be clear with patients if you can’t see them in what would be clinically defined as a reasonable time. Then we don’t develop these illusory waitlists, where a patient’s actually never going to be seen.”
Like Nelson Bays, his PHO has collaborated with hospital specialists in some areas to shift treatments, such as skin cancer removal, to GPs with advanced skills.
One area everyone agrees could be improved is systems for doctors to get specialist advice without having to make a referral.
Orthopaedic surgeon Chris Hoffman also works with a specialist physiotherapist who can provide expert advice to patients who need help, but not surgery.
There’s also scope for moving patients in pressure areas to places with spare capacity, Betty says.
“Standardisation across the country is a big, big issue … It’s about data, the way we communicate, and where things happen, in the community or in hospital spaces.”