Nadia Gabellone is very used to making the three-hour drive between Canberra and Sydney so her 11-year-old son Valentino can see specialists as part of his treatment for a chronic condition.
"He's had lots of presentations at hospital and been dealing with lots of different healthcare providers," Ms Gabellone said.
"The administration, if you can imagine dealing with five specialists – who, by the way, are amazing – just the mental load to coordinate all of that and have all the information available to them is a lot.
"And then the same for dealing with [the] nursing team when you're coming in for treatment."
But, recently, the Gaballone family was referred to a new program, aimed at easing the burden for those from the Canberra region who have to travel interstate for treatment.
The Paediatric Liaison and Navigation Service (PLaNS) acts as a point of contact for parents and carers to help link them with services in the ACT and New South Wales.
"They help with some of those small administrative things behind the scenes," Ms Gaballone said.
The service has also helped Ms Gaballone and her family have peace of mind in the event of an emergency.
"They take a really comprehensive history, and then they apply it to your file – so each time you're then presenting, you're not having to go through that history again," Ms Gabellone said.
"So it actually reduces trauma, but it also means that the medical team – when you present to the emergency department – have everything at their fingertips because every time it's going to be a different doctor or different nurse."
Co-designed with the Health Care Consumers Association (HCCA) and a dedicated consumers reference group, the program was a Labor commitment at the last election.
As well as coordination of assistance with Canberra Health Services and interstate hospitals, the service also helps to coordinate families' links with the ACT's education and community services — as well as private providers and non-government organisations.
PLaNS had a "soft launch" in September last year and has since received more than 50 referrals.
Canberra Health Services is now looking to make more staff, General Practitioners and community care workers more aware of the program so they can identify eligible families.
Barriers to overcome
Kara Allen, one of three nurses working with PLaNS, knows that for many parents and carers, trips interstate for medical treatment can be daunting and time-consuming.
"What only takes us a short amount of time could take them days to overcome," Ms Allen said.
"The barriers – we've often foreseen them, and we've seen them before so we can problem solve around that.
"We really look at creative strategies in working around these barriers rather than just following what has been done before."
Having dealt extensively with various elements of the ACT's health system, Ms Gabellone said it was a model that could be replicated elsewhere.
"If this applied to other complex chronic conditions in the hospital – the benefits to the community and the hospital would be ten-fold."
It is a sentiment shared by HCCA consumer participation manager Kate Gorman, who said there was a lot more that could be done to integrate care for other families.
"It's in the transitions that a lot of that stress occurs for families," Ms Gorman said.
"Improving those transitions of care and the way information flows between services is absolutely key, both within our city and the services here and with the interstate connections.
"A lot of those transitions are simply about building good relationships between services — I don't think we focus enough on that."
Ms Gorman said authorities took a refreshing approach to developing the PLaNS program, calling it an "excellent" partnership.
"We've involved parents and carers and the community organisations that support these organisations to really understand what these families go through in managing care for complex children.
"That understanding of their lived experience has been really embedded into the design of the service."
Absence of specialist services
ACT Health Minister Rachel Stephen-Smith said the development of the program had been a learning experience for health authorities, one that is still ongoing.
"What are the quick wins that we can get? How can we improve the coordination between our services so they are synced up? So, I think that's been a missing part of the puzzle," Ms Stephen-Smith said.
"There hasn't been anyone [who] has that big picture about what families are experiencing when children are receiving care in Sydney.
"Getting that feedback to feed back into Canberra Health Services and say, 'Hey – we could actually make life a little bit easier for that child and that family if we were doing things in the same way'."
The need for the PLaNS service highlights ongoing concerns about the absence of some specialist services in the ACT.
Ms Stephen-Smith said the government was acutely aware of those shortfalls and was looking to close gaps where they could.
"We're really committed to growing our paediatric services where we can safely do that," Ms Stephen-Smith said.
"For some of those services – they are highly specialised, and there is a very small group of children who require that highly specialised care.
"There are only two specialist children's hospitals in the whole of New South Wales with a population of eight-million people – so we can't expect to deliver everything here in the ACT.
"That's why it is so important to improve our place in the Sydney Children's Hospital network range of services and the connection between New South Wales and the ACT."
The minister added that she hoped the government would be able to provide more telehealth services so families would not have to travel as often.
Ms Gorman agreed: "Travel is going to be inevitable for those families, I think, but there's also no reason why we can't be creative about the way we seek specialists to travel and seek us and make that a more appealing proposition too."
