When Chloe Drogemuller-Fiebig's husband received a devastating diagnosis, she was thrust into the role of primary carer while navigating an unknown medical world.
Dave Fiebig, 41, was diagnosed with gioblastoma, an aggressive brain tumour, in 2021 and died seven months later.
Ms Drogemuller-Fiebig became her husband's primary carer in that time while also caring for their two young children, aged four, and three months.
"Not only were we trying to deal with a heartbreaking, terminal diagnosis but we were trying to navigate what is such a complex and unrelenting cancer," she said.
Ms Drogemuller-Fiebig said it was difficult to access timely answers to their questions in between specialist appointments.
"Throughout our whole journey we just had numerous questions of, 'What do we do now, what are the next steps?'," she said.
Ms Drogemuller-Fiebig said a brain tumour coordinator would have eased some of the burden as she managed her husband's appointments, medication and daily care.
"Having that nurse to be able to speak to on a daily basis, ask those questions that I'm not needing to bother our neurosurgeon about, or have to wait to receive a phone call back, having that person available to speak to whenever we need, it just takes a lot of pressure off," she said.
"And for those patients who can't cognitively understand what is happening to them, having that person there to guide them through that process will make a world of difference."
The Neurosurgical Research Foundation has committed to funding $25,000 a year over three years for a South Australian brain tumour coordinator.
The foundation estimates the full cost of the position to be about $100,000 per year and the state opposition has called on the government to fill the funding shortfall.
"We are the only state that doesn't have a brain tumour support coordinator and we believe it's about time we did," opposition health spokeswoman Ashton Hurn said.
Ms Hurn said the initiative had "unanimous" support from South Australian neurosurgeons.
"We know it would make a world of difference for families and their loved ones who are really battling through what is a life-changing diagnosis," she said.
Health Minister Chris Picton said the government would "always carefully consider any request for additional health services".
Mr Picton said the government's new SA Cancer Plan was expected to be completed by the end of the year.
"Our cancer experts are currently looking into cancer support models including identifying any areas for improvement, in conjunction with the development of the new SA Cancer Plan," he said.
The Neurosurgical Research Foundation's secretary and executive officer, Ginta Orchard, said while interstate coordinator roles were mainly employed by hospitals or non-for-profits, the foundation believed the position should fall under SA Health.
"Ultimately there's a lot of privacy issues as well, so if the person sits outside of SA Health they're not going to be able to access patient records and information," she said.
Ms Orchard said the role would include helping patients access clinical trials and research, as well as providing practical assistance such as applying for government services or palliative care.
"There are actually now quite a few services available for families but they're just not getting the information," she said.
"Or if they are getting the information, they haven't got the time or ability to make those phone calls."
Ms Orchard said many families were receiving support too late, while others were presenting to emergency rooms when they could not receive answers.
"We could be cutting down some patients that don't need to go there if they actually had somewhere to call," she said.
Ms Drogemuller-Fiebig, who established the Brave for Dave Foundation to raise awareness of and funds for brain cancer, said patients "need the support now and needed it yesterday".
"Other states do that really well with the brain tumour nurse or coordinator that they have in place, so to be the only state that doesn't have that — it's time we step up for our patients here in SA," she said.
