Patients say they are frustrated as increasing hospital wait times leave them in limbo, worried their condition will deteriorate.
It comes as new data shows the hospital backlog has worsened to almost 67,000 patients overdue for specialist appointments and treatment.
According to Te Whatu Ora Health NZ data supplied to the NZ Herald, as of the end of November 37,779 people were waiting longer than four months for a first specialist appointment and 29,058 people were waiting longer than four months for treatment.
That is a total increase of 4131 from the March 2022 figures which prompted then Health Minister Andrew Little to announce a task force to clear the backlogs.
But while the country continues to grapple with crippling hospital wait times patients say the impacts can be deadly.
In 2020, Carmen Torrance from Dannevirke was diagnosed with hypoparathyroidism, a condition when the parathyroid glands in the neck don't produce enough parathyroid hormone. The condition causes low levels of calcium in your blood.
Torrance said the only cure for hypoparathyroidism is to have a 20-minute operation and so she went on the waiting list.
After around 11 trips to Palmerston North Hospital, bone density tests, radiotherapy, MRIs and nuclear medicine - Torrance then had to just wait.
"It's only a 20-minute [to] half-hour surgery to save my life but I can't have it because there's a huge queue," Torrance told Ryan Bridge on AM.
So Torrance waited for over two years.
During the wait, she developed osteopenia, which is when a person loses bone mass and their bones weaken.
"While I am waiting my bone density is seriously declining," she said. "I was very worried about breaking a bone."
At the end of 2022, Torrance said she saw a new doctor who encouraged her to go to a private hospital.
With help from friends and family and a discount from the surgeon, Torrance was booked in for the $11,000 surgery two weeks later in Hamilton.
"It's terribly frustrating and you're just in limbo, and you have no idea what's going on or when they are going to contact you," Torrance said. "I think I probably would still be waiting if it hadn't been for the fact that I was given money so that I could go and get my surgery."
Mental health services have also been hit by long wait times, with one woman saying her daughter was kicked off the wait list because she wasn't sick enough to receive care.
Christchurch mum Rebecca Toms discovered her daughter had developed an eating disorder during the COVID-19 lockdown.
When they went to her daughter's GP they were told it was going to be tricky to get on the waiting list but after going back in forth she eventually got on the list.
But a few months passed, and the family heard nothing from the hospital.
Toms called the hospital who told her she wasn't deemed sick enough and she was kicked off the waiting list.
Toms told AM to be deemed 'sick enough' for treatment the patient has to be a certain weight and physically really sick.
"With an eating disorder, it can happen really quickly and it is a life-threatening illness, so even if you're not physically sick you're mentally sick," Toms said.
Toms said she felt lost after they were given no resources or contacts of experts to see.
"It was a very scary time, it was frustrating," she said.
Toms had to seek her own help for her daughter, which comes with an expensive price tag.
However, she is not alone. Toms said there are numerous parents in similar situations to she was.
It prompted her to start a petition to the government in 2021 to provide urgent expert care and subsidy assistance for young people with eating disorders.
Toms also started With LoveED which is a free network where those healing from an eating disorder and their families can go for support.
According to the Canterbury District Health Board, now Te Whatu Ora, there were 87 people on the waiting list for the South Island Eating Disorder Specialist Service (SIEDS) as of March 2022. Data from the health board also showed waiting times have been steadily increasing over the years, with an average wait time of 114 days in 2021, compared to 54 in 2017.
In March 2022, the Government allocated an extra $3.9 million in funding over four years to increase the capacity of eating disorder services.
