Kylee Ostermann and her 11-year-old son Alex have waited nearly a year for specialist equipment to allow him to stand upright. Photo: Supplied / Kylee Ostermann
The number of sick and disabled children waiting longer than the four-month target for assessment or treatment has blown out by more than 600 percent in the last year in some areas.
Paediatric specialists warn wait times were getting to the critical point where some children were not getting treatment at the most beneficial age for their conditions.
Waiting is a way of life for Kylee Ostermann and her 11-year-old son Alex, who has multiple disabilities.
Waiting to get an appointment with a specialist, waiting for that appointment and then waiting hours sometimes on the day of the appointment to actually have the appointment.
Then they start waiting for the action to come from the appointment, waiting for surgery or therapy, or waiting for a piece of equipment.
Listen to Ruth Hill's full report here
"All that combined makes waiting one of my big past-times," Ostermann said.
11-year-old Alex using his standing frame. Photo: Supplied / Kylee Ostermann
"I'm always waiting."
However, some waits were worse than others.
In 2018 Alex, who had no previous history of epilepsy, had two seizures in two days in which he stopped breathing and his mother had to resuscitate him.
Then they had to wait five months for an EEG (electroencephalogram to measure electrical activity in his brain) to get a proper diagnosis.
"You didn't know whether it would happen in the day or the night... I didn't sleep very well, I didn't want to leave his side, it was really stressful. And no-one could tell you when you would get an answer."
Last August, Alex had surgery to fix the curve in his spine, causing him to grow several centimetres, which meant he was too tall for his standing frame.
The new one finally arrived last week.
"So we've waited nearly a year to get him up and standing, which will impact his joints and his legs for his development."
The family lives in Ruakākā and have to drive 30 kilometres north to go to Whangārei Hospital for general services.
Any time they need to see a specialist, it is a trip to Starship in Auckland, where it sometimes takes up to an hour to even find a carpark.
"Then you've got your waiting time for your appointment, and you've got to beat the traffic home. So it takes the whole day just to see a doctor for ten minutes," she said.
Ostermann, who volunteers with the family support group Children With Disability New Zealand, said it was common for families to wait months for a diagnosis or to get support services in place.
"Some of them are waiting just two years for something to happen, which isn't very easy for families facing other struggles."
Te Whatu Ora wait time figures
The number of children waiting longer than Te Whatu Ora's four-month target to be assessed by a paediatrician (for physical, mental and behaviour problems) ballooned more than 600 percent, from 394 to 2550, in the year to May.
The worst month was April, when 2902 children - more than 30 percent of children - were waiting too long.
Of those children waiting to be assessed for surgery, one in five were waiting longer than four months in May - that's a five-fold increase in 12 months.
The number peaked in January, when 475 kids were waiting.
Of the children approved for surgery, between 40 and 50 percent wait longer than they should every month.
One paediatric surgeon, who wished to remain anonymous, told RNZ "the recent deterioration in access to sufficient planned operating lists (previously called elective operating lists) for children's surgery is getting to a critical point where many children are now not getting their surgery at the optimal age for their condition".
Association of Paediatric Surgeons president Dr Victoria Scott, who is based in Christchurch, said a quarter of their paediatric surgical lists that were being contracted out were cancelled in the last month because the private hospital had no capacity.
"We have good abilities to prioritise our patients, so those patients who have potentially life or organ threatening conditions, we will always prioritise you," she said.
"But that then means other children are waiting even longer.
"It's frustrating, we look after people, we look after families with lives.
"We want to improve those lives, whether it's symptoms or function, and the reduced access means we are waiting alongside families who are advocating for them on a daily basis."
The application process for getting theatre lists restored was "very ad hoc".
"I applied a couple of weeks ago to have my lists that were lost, but I haven't heard back yet. I don't know whether I will get those lists back in the short or the medium term."
New Zealand was not the only country to have children waiting longer than the accepted age threshold for certain operations - but fortunately the evidence in at least some cases showed surgeons were still getting good results, she said.
And while it was miserable for children and stressful for their families waiting for surgery, the whole health system was under pressure.
"We advocate for them every day, their parents advocate for their children every day, so there are voices standing up for the children.
"But those further up the management and leadership structure have difficult decisions to make as well. When you have so many adults waiting for operations that will save their lives, it's difficult to prioritise an otherwise safe child."
A shortage of paediatric surgeons in Wellington means surgeons from Canterbury and Waikato have been flying to the capital all year in shifts to operate on children from the lower North Island.
Scott said they were relieved that one new surgeon had already arrived in the country and would start work in a few weeks, while the other was set to arrive early next year, bringing the Wellington team up to full capacity.
Meanwhile, the number of babies and pre-schoolers hospitalised for potentially avoidable complications jumped 56 percent in Auckland in the year to March.
General Practice New Zealand chairperson, Porirua GP Bryan Betty, said that was due to a lack of access to primary care and the high number of patients waiting for specialist appointments.
"Patients can't access timely appointments at general practice at this point because of these capacity issues.
"And I think that's starting to put extra pressure on the hospital system, and that's what's starting to show up in these figures."
Head of child health research charity Cure Kids Frances Soutter said wait times were driving hospitalisations.
"That's because if you have a child with a chronic condition - and bronchiectasis is a really good example of that - where it's worsening and they're not being seen by a specialist, not getting the right medication or therapy, then they're the kiddies who are ending up in hospital."
'No clinician is comfortable with the current wait times'" - Te Whatu Ora
Te Whatu Ora said it was putting in place new systems and processes and recruiting more staff - but it would take time to show marked improvements in waiting times.
In a written statement, its national director of hospital and specialist services Fionnagh Dougan said the agency wanted to provide as much planned care was possible and every case was "reviewed against a prioritisation schedule".
"We know that no clinician is comfortable with the current wait times for a child's much-needed surgery, treatment or first specialist appointment. We are committed to the provision of a safe service, and we would like to reassure our community that urgent care is always available for our tamariki and rangatahi."
Services in Auckland were still recovering from the "significant disruption" from Covid-19, combined with staff shortages and high demand, she said.
"We have run extra clinics utilising more fellows and recruited a paediatric surgeon. Recruitment is underway for an additional paediatric surgeon to help manage the increased demand."
She praised the paediatric surgeons from Christchurch and Waikato who were providing cover for the lower North Island until the two new specialists were in place.
"These surgeons are going above and beyond to deliver this increased workload without compromising the Te Waipounamu or Te Manawa Taki services.
"Over the last three months there has been a focussed effort on clearing all of our waitlists of those who have been waiting the longest for treatment and we know this is making a difference in paediatric surgery.
"However, there are other issues which are impacting on our services such as the anaesthetic technician shortage at Christchurch Hospital."
In terms of paediatric medicine, there were several factors causing the backlog across the motu, including an increasing number of children referred for a number of conditions (including autism spectrum disorder and food allergies), population growth and recruitment problems, she said.