Lucindale Parents Bridget And Slade Johnson Say Accessing Specialist Care For Their Daughter Means Travel, Waiting And Constant Advocacy
What happens when your newborn is flagged “high risk” for cerebral palsy and you rely on regional healthcare in South Australia?
For Lucindale parents Bridget and Slade Johnson, the diagnosis was only part of the battle. The other part was navigating a regional healthcare system where specialist care is hours away.
Their daughter Edwina, known as Winnie, is nine months old. She is bright, adored and already well known at the local pub on schnitty night. But since birth, she’s been under close watch after early testing revealed a high risk of cerebral palsy.
Winnie was born in Adelaide after Bridget’s high-risk pregnancy. Within hours, she struggled to breathe. There were concerns about her heart. Her parents endured an excruciating six-hour wait while doctors searched for a neonatal intensive care bed at either Flinders or the Women’s and Children’s hospitals.
After ten days in hospital, she was safely released. But Bridget and Slade stayed in Adelaide another week.
“If anything went wrong, they wouldn’t have had the services in the South East to deal with it and we still hadn’t got a conclusive diagnosis,” Bridget says.
The drive back to Lucindale felt much heavier than usual.
“We finally brought Winnie home to not the remotest farm, but remote in terms of healthcare,” Bridget says.
In regional healthcare terms, distance becomes part of daily life.
At first, Winnie developed well. Her six-week check-up back in Adelaide was fine, but subtle signs prompted a referral to the Women’s and Children’s Hospital Early Detection Unit.
Video analysis revealed “high risk of cerebral palsy”.
Since then, life has become a cycle of weekly physio, weekly hydro and referrals that take months to secure. An MRI under anaesthetic will determine a formal diagnosis. Until then, they wait and watch.
Living Four Hours From Care
“It’s just been a waiting game of her developing and waiting to see which balls drop or don’t drop and where the gaps are until we can reach a diagnosis,” Bridget says.
“It’s literally tens of hours a week trying to coordinate bookings and travelling to these appointments, which are few and far between.”
“But what’s the other choice? You do it because you have to.”
“If you can get an appointment, great. If you get a specialist in your local town, great. If you can get an appointment as frequently as is recommended? Highly unlikely. It’s just a losing battle.”
To add insult to injury, while battling pre-natal depression, Bridget was referred to a remote impersonal service answered by AI.
“You’re already isolated, already struggling, and that’s the only option?” Bridget says.
“And you’re being charged $300? It wasn’t for me. There are no local services. There is a psychologist in Mount Gambier, a three hour round trip away.”
“Again, the wait time is so long. What about the people that are really struggling that don’t recognise the benefit of psychs or don’t have the willpower to reach out for themselves? It’s scary. There’s nowhere.”
Today, Bridget’s background in corporate finance is being used to chase referrals and advocate for allied health support for her daughter.
“We Just Want The Services That We Are Eligible For And Are Paying For”
“The services might be subsidised if you’re lucky,” Bridget says, “but nothing else is. The travel, the time, the emotional bandwidth of dealing with it all – it all adds up.”
“We chose this life. We love this community. But we’re taxpayers. We run a business. We contribute just like our city counterparts. And yet we get so little bang for our buck when it comes to services.”
“People have the same health issues out here – if not more. And when you’re already sick or stressed, you don’t need the extra burden.”
“Country people don’t whinge nearly as much as they should. We just want the services that we are eligible for and are paying for.”
Bridget, Slade and Winnie are the latest family to share their experience through the From Here to Healthcare campaign led by Plant a Seed For Safety founder Alex Thomas.
Sparked by community response to her own family’s experience, the campaign is calling for meaningful reform so rural voices are not an afterthought in state health planning.
As the state election approaches, families like Bridget and Slade’s are asking for something simple.
Equal access should not depend on where you live.
If you have a story to tell, and want to see change in rural and remote health care access, tell your story via this online survey.
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