Liz 'crashed and burned' after what happened to her husband, until she came across this Deakin clinic

“We never prepared for this scenario.”

After many discussions with their family, Liz and Mark (last name omitted) decided to proceed with an operation to remove a growth from Mark’s brain stem. The couple were in Queensland but recently moved to Canberra to find better health care for what happened next.

“We were prepared for death, and we were prepared for recovery and rehabilitation, but …” Liz says.

Mark woke from the procedure bed-bound – unable to move or talk. Doctors diagnosed him with an extremely rare condition called ‘locked-in syndrome’, for which there is no treatment or cure and very little chance of recovering significant motor functions.

For two years, Liz visited him in the hospital every day, and when he was finally discharged back home, it was to around-the-clock care.

“It’s super challenging,” Liz says.

“A lot of people say they would have walked away. But my husband is a very strong individual, and he’s always supported me, so I’ll always support him.”

Barbara Shone is the family’s “saving grace”.

Barbara is a social worker for Next Practice Deakin, a “new kind of medical practice” in Australia, and one that received a $250,000 grant from the ACT Government’s Capital Health Network to deliver a program to help more people like Liz and Mark.

“He has so many medical services, like specialist and hospital visits and other consumables, and it’s all really complex, and to bring it all together is really hard, and I often crashed and burned,” Liz says.

“Even something simple – like finding a hairdresser for Mark who could come to the house – I just couldn’t, but this little angel [Barbara] found one.”

Next Practice Deakin launched the “comprehensive, integrated primary care” program in September 2022 to help 60 house-bound Canberrans through a blend of in-person visits and telehealth appointments.

Thanks to the ‘Delivering Better Care’ grant, the practice wants to expand the program to include 200 to 250 participants within 18 months.

“When it comes to the care of people with complex and chronic needs, the pure medical need is actually relatively small,” Next Practice Deakin founder Dr Paresh Dawda says.

“It’s support and wraparound care that’s needed so much more. It doesn’t need to be a GP that does that, but it does need to be a GP-led team. And so one of the things this program does is allow us to broaden that scope and extend that core team within general practice.”

The practice comprises doctors, nurses, and social workers like Barbara, who can work together to answer medical questions or even help navigate the labyrinth of social housing arrangements, pensions, Centrelink payments and more.

“I think actually going into the home is really important because sometimes people may come here, but they may mask things and say they’re okay,” Barbara says.

“But when you go to a house, people are a little bit more relaxed and you can actually see the environment as well, and you can get a clearer picture. If you know the problem, you can give them a better solution.”

The number of home visits conducted by general practitioners has also been declining for several decades, and the rate is even worse in the ACT compared to other jurisdictions in Australia.

Dr Dawda says this is “no surprise”.

“There’s not a sufficient GP workforce in the ACT – that’s been a historical problem – so our starting point is low, and conducting a home visit takes much longer than a visit on-site.

“The third issue is a funding issue – there’s a big cost around doing a home visit because Medicare, for example, won’t remunerate the time to travel for the visit.”

To cover even more ground, some of the grant money has been put towards technology to enable “virtual examinations”, enabling staff to look at wounds, look at ears, and listen to hearts, and lungs, removing that barrier to GP visits.

The practice is already close to reaching half of its target of 200 people as word gets around.

“We’re finding new referrals coming in on a week-by-week basis,” Dr Susha says.