Three separate doctors over three separate appointments told the mother of seven-year-old Halle not to worry and sent her home after she presented complaining of headaches.
Halle was later diagnosed with brain cancer.
Her story and the lengths her parents have had to go to for treatment were raised at the NSW parliamentary inquiry into health this week.
The inquiry was also told of patients missing cancer appointments because treatment is too expensive and the inequalities in services when it was addressed by representatives from CanAssist and the Cancer Council this week.
Cancer Council chief executive Jeff Mitchell described the experience of rural and regional cancer patients as "a postcode lottery".
"Cancer outcomes in NSW are among the best in the world but for people living in rural and remote NSW outcomes remain poor compared to people living in metropolitan areas.
"Everyone with cancer deserves the best chance of living well and yet the evidence clearly demonstrates that the chance of being diagnosed with cancer and dying from cancer increases with distance from major centres.
"The reality is that a person's experience of cancer is a postcode lottery.
"Addressing out of pocket costs for cancer treatment will reduce inequality. Your postcode should not determine whether you can afford treatment or not."
During his address Mr Mitchell also sounded a warning of worse to come following COVID.
"COVID-19 has stopped many things, but it didn't stop cancer," Mr Mitchell said.
"The delays in screening, diagnosis and interruptions to cancer care will see cases rise, we believe, quite sharply for an extended period.
"Lessons also learnt from COVID-19, Mr Mitchell suggested, showed NSW needed to address the inequalities in our health system.
"Inequalities that existed before the pandemic.
"If we don't have a plan to address the ongoing impact of access to cancer services COVID-19 will only amplify those inequalities.
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The Cancer Council's director of cancer information and support services, Annie Miller, said the organisation was routinely contacted by people in the regions who have received a cancer diagnosis and been told to travel to the city for treatment, but decide not to follow through.
These patients cite a number of reasons, including not being able to leave their properties, the cost associated with travel and accommodation, and having families to support.
"We've had recipients who tell us directly that they would have had to sell their houses had it not been for us and they would not have been able to afford [treatment]," CanAssist relationship manager Majella Gallagher said.
All speakers agreed that a key solution to this problem was further funding and wider eligibility for travel and accommodation scheme IPTAAS.
CanAssist executive director Emma Phillips said the scheme must be a "centrepiece" for health outcomes, but most patients are either unaware of its existence or find the application process too overwhelming.
"For those that do persevere rebates are inadequate, travel and not for profit accommodation rebates have been static since 2015."
Ms Phillips also said it was not just people from lower socio-economic backgrounds seeking help when they get a cancer diagnosis - in the bush, people "who seem asset and cash rich" were also calling out for assistance.
Ms Phillips gave the example of Halle's parents who made 132 trips over two and a half years travelling from there home in Taree, more than 24,000kms seeking treatment for their daughter.
"Seventy-four per cent of this travel related to radiotherapy treatment," Ms Phillips said.
"Whilst the treatment itself is often short its delivery makes it uniquely expensive for those who don't live close to these services.
"The indirect impacts are financially devastating," Ms Phillips said.
In Halle's case her mum stopped work, her dad dropped back to two days a week and her grandmother left a part time job.
Ms Phillips said Federal grant money for radiotherapy services is "being left on the table" because the state government is refusing to co-fund seven new services across country NSW.
"For these services to be viable at no out of cost expenses for local residents the NSW State Government must be prepared to either operate them or provide a co-payment to private operators," she said.
"These co-payments are made to metropolitan areas.
"As far as we know NSW Health has refused all partnership proposals, four of seven grants remain unawarded.
"Why leave Federal grant money on the table and deny equitable access to treatment?" Ms Phillips asked the inquiry.
Staffing was also raised by Ms Phillips.
"Undervalued and under resourced," she described staffing.
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