Medical records should broadly include information given, decisions made, and concerns discussed with a patient, according to the Medical Council of New Zealand guidance on managing patient records.
The woman’s surgery took place in October 2022, removing a 10cm by 8cm tumour.
The existing records did, however, detail an ultrasound rejection, one gynaecologist letter, and her transfer to a new doctor – which ultimately led to the discovery of her tumours.
After calling around, Sarah found her lost records at a lab in Palmerston North, including the blood tests and the names of the requesting doctors. However, she must travel back to Manawatū to obtain them.
Sarah claimed she waited months at a time and regularly tried to chase up blood test results, ultrasound referrals, and Fertility Associates referrals while under Health Hub Project’s care.
With the help of the HDC, Sarah wants Health Hub Project to be “revamped” to make sure other people don’t get lost in the system.
In 2019, Sarah, 22, had been struggling to conceive and chose Health Hub Project as a GP because it had a short wait time.
After repeatedly requesting test results and referrals, Sarah claimed she was told she’d need to try to conceive naturally for five years before she could be referred to Fertility Associates. Without a referral, just the first doctor consultation with Fertility Associates was $380.
By about April 2022, she had moved to Taumarunui, where her new doctor was “absolutely appalled” and “upset” by her experience.
Sarah’s tumour was on her left ovary, potentially growing since she was a teen.
The doctor sent the referral to Fertility Associates quickly, where she was also finally given an ultrasound.
“It was during that, they couldn’t find my reproductive organs because there was this mass in front of it.”
The mass was a 10cm by 8cm tumour, so big it protruded from her stomach, and could be felt and moved around by hand.
The large tumour and ovary it attached itself to were surgically removed, leaving behind her other ovary and bowel, both with small tumours that shouldn’t have affected their functioning.
The potential of living with colostomy bag forever terrifies the woman.
While her tumours were not cancerous at the time, Sarah must now have MRIs every six months to watch for cancer development.
She said she has been told the only treatment will be eventual removal of all infected tissue – losing all reproductive organs and a bowel resection.
Sarah will then need to wear a colostomy bag and take hormones.
The Taumarunui woman now has two kids just a year and a half apart.
She has postponed the removal of the organs in favour of having children, which she was able to do easily once the large tumour was removed.
It turned out the tumour was putting so much pressure on her uterus that nothing was able to live in it.
Health Hub Project declined to comment on the alleged missing medical records.
Executive director Andrew Nolan previously said that prior to the Herald’s inquiry, they had not had direct contact with Sarah since she transferred practices in 2022.
The Health and Disability Commissioner receive complaints about the quality of services provided to people.
Nolan said it would not be appropriate for them to comment until the HDC’s formal investigation was complete.
“All matters of this nature are taken seriously and are managed through established clinical governance and complaints processes.”
Nolan said the assessment included reviewing clinical and administrative records, and deciding next steps that may help in “resolving the matter or mitigating any potential adverse health consequences”.
An HDC spokeswoman said they were awaiting more information to progress Sarah’s complaint.
Sammy Carter is a journalist for the New Zealand Herald covering news in the Wellington region. She has previously worked at the Rotorua Daily Post.