Rebecca Knewstubb and her family were hoping for a sense of calm when they traded their hectic life on the Gold Coast for a quiet part of the central Queensland coastline.
Instead, they found themselves more stressed than ever as their 15-year-old daughter Annabelle’s health began to decline.
Annabelle’s epilepsy worsened soon after they arrived in Yeppoon in 2021.
Her seizures resulted in trips to the hospital multiple times a week.
She had been diagnosed with epilepsy when she was four, but her family had sought treatment for her through a major children’s hospital that was less than 50 minutes’ drive away.
But that option was gone when they moved north.
“We’ve considered moving back so that we can get treatment for Annabelle,” Ms Knewstubb said.
She said her family waited six months to see a paediatrician and two-and-a-half years to see a neurologist in the public system in Brisbane as Annabelle’s situation deteriorated.
Ms Knewstubb said it had affected Annabelle’s ability to be a normal teenager.
“She doesn’t go out, she won’t leave the house because she’s scared that she will have a seizure in the community and Mum won’t be there,” Ms Knewstubb said.
Preparing for the move
Ms Knewstubb said she researched on the internet to see what services were available before her family moved.
“They said there were visiting neurologists … but there’s not, and there hasn’t been for the last two-and-a-half years,” she said.
Her advice to anyone thinking of moving regionally was to call the hospital and health service and check what services were available and what the waiting lists were like.
Mackay region GP Elissa Hatherley, who also heads up James Cook University’s Clinical School, said regional hubs in Queensland, such as Mackay or Yeppoon, offered an amazing lifestyle but regional areas of Australia were severely under-serviced.
Regional Queensland was the fastest-growing regional area in Australia in 2021–2022, according to the Centre for Population.
“If you need a neurologist, for example, we’re relying on clinicians from other health services being loaned to us,” Dr Hatherley said.
“But then at the last minute, their hospital might not release them and those appointments have to be cancelled.”
Dr Hatherley said word-of-mouth recommendations could help new residents get appointments with a GP.
“You might need a recommendation from a friend or a neighbour to say, ‘Hey, I’ve got these really nice neighbours coming or just moved to the area, could you please take them on?'” she said.
“Having someone to vouch for you really does help.”
Dr Hatherley said someone who needed specific care could set up telehealth consults with specialised doctors via their GP.
Making it stick
WA residents Barry and Karen Johns moved from Perth to Busselton, a popular beachfront tourist town, in February to be closer to their children and grandchildren.
Ms Johns has functional neurological disorder (FND), a rare disease that causes problems with the functioning of the nervous system.
Mr Johns said his wife’s condition required constant supervision.
“The nervous system does what it wants basically, and you’ve got no control over it, and it’s not as if you can even predict it,” he said.
Mr Johns said they had struggled to find a trusted specialist since their long-term neurologist retired more than two years ago.
”The demand for them [neurologists] is so great that there’s none in the private sector that we could get, and it took us over a year to get back into the public system back in Perth,” he said.
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“When we came down here, we spoke to them about transferring down and they said it could be two to three years before we see anyone down here.”
Mr Johns said despite the challenges, he had been able to find a good GP and physiotherapist in the area after posting on a local community Facebook page.
He said people faced with similar challenges who wanted to make the regional move should not be made to feel like they couldn’t.
“I think for the purposes of the move, do it,” he said.
“Push and keep on pushing because if we don’t push, then too much lip service is paid to disability without actually doing anything about it.”
Fighting for services
National Rural Health Alliance chief executive Susi Tegen said despite making up 30 per cent of the population, people in rural, remote and regional Australia had vastly worse health outcomes than their metro counterparts.
“People are dying 14 to 16 years earlier in rural and remote communities in particular than they are in urban centres,” Ms Tegen said.
She said a deterioration in services came down to workforce shortages.
“We’re expecting things from these health workers that we would never expect from health workers in the city,” she said.
But Ms Tegen said people should not be deterred from moving regionally.
“You will have opportunities in rural Australia that you would never have in the city … but the problem is that the infrastructure expenditure of governments is not occurring [here],” she said.
Ms Tegen said people moving to regional areas needed to speak up and advocate for more services.
Ms Knewstubb said Annabelle would have seen a neurologist years ago if her family was still living on the Gold Coast.
“Four years ago, we could do anything [as a family] because there wasn’t a lot of seizure activity,” she said.
“But now, because her medication wasn’t correct and we don’t have a new diagnosis for her, it has changed a lot.”
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