A dying young mum whose cancer was not diagnosed for almost two years fears ACC will not make a decision on her compensation claim while she's alive.
ACC can legally take up to nine months to make a decision on a treatment injury claim - due to the complexity - but it must get permission from the complainant to take that long.
Selina Gilfedder said she was horrified to receive a letter from ACC requesting that - three months after she'd lodged the claim.
In January, doctors estimated she had a year to live but ACC did not have to make a decision until early December.
"I thought I was going to be alive when we got the decision, now I might not be," Gilfedder told the Herald.
"I felt disrespected getting that letter. I can't believe how hard the system makes you fight when you're already fighting for your life."
If ACC finds her disease had progressed due to lack of treatment and she has died by the time a decision is made, she will miss out on $130,000 of compensation - not including the money her family will be given.
The 38-year-old West Aucklander's story dates back to January 2017 when she first visited her doctor feeling unwell.
Between then and October 2018 she went to her GP at least seven times complaining she had been bleeding from her bottom and experiencing severe abdominal pain.
During this time she had several blood tests done which showed elevated CPR levels. Studies have shown elevated levels were associated with shorter survival times in people with bowel cancer.
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No physical examination was done but a referral was made to the hospital for an ultrasound, which took more than six weeks, but nothing was discovered and Gilfedder was told by her specialist "it must be your diet".
Her GP echoed this conclusion and advised she cut out red meat, dairy, alcohol and gluten - so she did.
By October 2018, she had lost 6kg and was still complaining of the same symptoms. She was given stronger pain relief and later, when she returned in "crippling pain", a higher dosage.
"I was like a walking drug supply living off three doses of Tramadol a day," Gilfedder said.
Last New Year's Eve, the mother-of-four's condition took a turn for the worse.
"The pain relief was no longer having any effect and I remember not wanting to ruin my family's New Years but by 5pm my husband rushed me to hospital as the pain was far beyond bearable," she said.
She was rushed into emergency surgery where a large cancerous mass was removed from her bowel. Doctors said it was too advanced to treat and Gilfedder was given about a year to live.
"At first I was like yes finally a diagnosis, I knew it was cancer but then words terminal sunk in and I was just in complete shock."
Since then she had been receiving chemotherapy in an effort to prolong her life.
Gilfedder said her family have suffered a great deal.
"One of my sons is really struggling, he just shuts down whenever it comes up so we want to try to get him some counselling."
While her employers had been incredibly supportive, she has had to cut back her hours which has meant their finances have taken a hit.
Her best friend set up a Givealittle page to support the family through a difficult time.
An ACC spokesman said nine months was the absolute maximum time it would take to make a decision but they hoped to get external specialists' reports back within the next four weeks.
A decision could hopefully be made shortly after that – depending on the nature of the expert advice, he said.
The spokesman said if Gilfedder declined to provide them with more time, a decision would be based on what medical information they currently had, without external expert opinions.
"This means we may not be able to determine if there was a delay in diagnosis in this case and if so, whether a different treatment path could and should have been followed," he said.
High-profile ACC lawyer John Miller said he accepted claims of this kind took a lot longer than clear-cut accidents but when someone was dying it needed to be fast-tracked and treated as urgent.
"If it was the Governor-General in this situation, I'm sure it could be done within two weeks.
"If you have to fight the bureaucracy it just adds to the stress of staying alive and you can see why some people get depressed or think about suicide, it's terribly sad - the bureaucracy should be helping us," Miller said.
Bowel Cancer NZ spokeswoman Mary Bradley said stories like Gilfedder's were happening far too often and GPs needed to be much more thorough.
"It's simply not good enough that this keeps happening."
Bradley said patients needed to be given all the options, GPs needed to connect the dots better and everyone needed to be aware bowel cancer was not an old person's disease.