The nurses are volunteering and raising money to keep an ongoing program for patients diagnosed with rare diseases after the federal government broke an apparent election promise to renew funding last month.
More than 3,000 people have received care through the Patient Pathways program, which funds and trains specialist nurses for 10 charities including Crohn’s & Colitis Australia and the Mito Foundation, on the basis that people with a new diagnosis often seek first the help of a non-profit organization.
“When you’re in trauma and you don’t know where to go, a ward like this can be your brain: they’re like, ‘I’ll do this, I’ll do the research,'” Arabella Thompson said. She was put in touch with a Pathways nurse when her three-year-old daughter Luci was diagnosed with moyamoya disease, a rare vascular disease that affects blood flow to the brain.
The telehealth program provided 25,000 interventions, assessments and referrals, including to specialist services and clinical trials.
The Community Research Center (CCDR) received $1.8 million in 2019 to conduct a three-year trial of the program, with a pledge of an additional $150,000 to cover costs for three months during an evaluation of the program. trial, to assess whether the program should be extended to 18 charities.
In March, then-shadow health minister Mark Butler said Labor would fund the expanded scheme and provide $2.47 million over three more years when the initial funding ran out in June, without condition for a new assessment. He described the program as a “relatively modest” investment, yielding “really solid results”.
But the CCDR, which understood that to mean the program would be funded from July, has since been told funding would not be finalized until the October budget, with the money not expected to arrive until January.
Dr Catherine Holliday, CCDR’s chief executive and joint program coordinator, said it was “disappointing” that the extension was not funded, adding that the campaign pledge “really meant a lot” after Butler had spoke so positively about the benefits. of a nurse-led program.
“Running a health service is a complex undertaking and we had worked very hard to ensure we were ready for implementation on July 1,” she said.