And treatment costs differed: Someone with breast cancer being treated at a public hospital on Sydney’s north shore would have no costs, but the same treatment may result in about $3000 in out-of-pocket expenses in Wagga Wagga, said Mr Mitchell.
For most people, cancer diagnosis began with a local doctor, said Emma Phillips, the chief executive of Can Assist, a support network for people that helps with accommodation and other expenses.
“Yet our communities wait too long, some up to four weeks to access what is a junior GP,” she told the inquiry. “In Halle’s town, the long-term doctors had closed their clinics.”
When people had a diagnosis, Ms Phillips said they struggled to get assistance under NSW’s Isolated Patients Travel and Accommodation Assistance Scheme.
The scheme was confusing, requiring an 11-page form compared to only three in the comparable Victorian system, to receive assistance for a repeat specialist visit, the inquiry heard. It was also insufficient, providing a rebate of 22 cents per kilometre travelled for treatment, compared with the mileage rebate of 70 cents per kilometre that NSW government employees receive; and it hadn’t kept up to date with accommodation costs.
A 2020 Cancer Council survey of 350 people in regional areas heard 41 per cent of people had difficulty accessing care because of where they lived, 78 per cent were afraid that their chances of surviving cancer were reduced because of where they lived, and 54 per cent said distance to the nearest health care facility was the biggest barrier to getting treatment. One in five people living in regional NSW skipped appointments and treatment because of cost, the inquiry heard.
Halle is now eight and has just had her fourth surgery to remove more tumours.
Ms Smyth said a problem with regional health care was that doctors didn’t have the specialisation or the experience that many doctors in the cities had.
Because COVID-19 made it hard to get subsidised accommodation in Newcastle, the family drove the round trip of more than 300 kilometres from Taree every day for seven weeks for Halle’s 15-minute daily radiotherapy sessions.
“In Newcastle people were coming in wearing work clothes and uniforms, they were in and out in 15 minutes. Tradies coming in to do early sessions. They get to go to work and not miss much, or come in their lunch breaks. They get to keep earning income. They may not feel great, but at least they don’t feel the financial burden,” she said.
Halle’s ill health has set the family’s finances back a long way, and they appreciated the help they received from Can Assist. Mr Kiehne, an exercise physiologist, also took leave to care for Halle and her brother Max, now five.
“This is not the end,” said Ms Smyth. “We will keep at it. All we care about is that our daughter is healthy,” she said.
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