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“It’s got to be better.” Advocating for greater regional support

Wednesday 8 December, 2021

The last thing on Paul’s mind was a brain tumour. It was Christmas Day in 2016 when he lost all feeling on the right side of his body and collapsed into a painful seizure.

Paul was immediately transported to his local hospital. Several doctors and numerous tests later, a CT scan revealed a low-grade astrocytoma about the size of an egg on Paul’s brain.

Within two weeks, Paul was undergoing five-hour awake brain surgery, followed by five weeks of radiation therapy and six months of chemotherapy. All his treatment was undertaken in Melbourne, over two hours away from Paul’s regional hometown.

 Paul undergoing surgery
Paul underwent five-hour awake brain surgery to treat his astrocytoma.

But while he didn’t mind the commute for treatment – Paul knew he was accessing the best care and the specialised equipment he needed which was not locally available – it was an entirely different story when it came to getting support.

Paul was shocked that large, leading cancer hospitals did not actively offer much-needed help and when prompted, did not respond with local referrals. The compounding costs of travel and accommodation were burdensome – even more so because Paul was forced to retire from his much-loved career in the police force due to his tumour.

“I like to think of myself as a pretty stoic and positive person, but there would be others in different states of mind and there definitely needs to be more support out there. Initially it felt like I was the only person in Australia with a brain tumour,” said Paul.

“Once treatment finished, I thought ‘what happens now?’ – I was on my own and I didn’t know what to do. Things were surreal for such a long time.”

The burden of cancer is not evenly spread in Victoria. Data from our submission to the Victorian Cancer Plan (VCP) showed that those who live in rural and regional areas face poorer cancer outcomes, with cancer survival rates being higher for residents of metropolitan Melbourne compared to the rest of the state.

Ensuring access to cancer treatment and support is equitable across Victoria is key to addressing this issue. But while there are many positives to regional care, such as support that is local and community-led, there are also barriers.

Most predominantly these include a limited regional workforce, constrained resourcing, lengthy travel time and inadequate communication within the health system, as noted in our VCP submission.

And yet, demand for local support is strong – slightly under a quarter of all connections to our 13 11 20 information and support line this year came from people living in regional and rural areas. There has also been significant demand for referrals to services located outside of metropolitan Melbourne.

Paul in his police uniform
Paul was forced to retire from his 15-year career in the police force due to his tumour.

Feeling frustrated and isolated, Paul joined Cancer Council Victoria’s Community Advisory Network (CAN) to provide a voice for regional and rural people affected by cancer and ultimately improve supports so others don’t feel alone in their journeys.

Prior to this, Paul spent years as a volunteer with our Cancer Connect program, providing free and confidential telephone peer support to others who have been through a similar cancer experience.

For Paul, sharing his story and contributing his insights is all about giving back as much as possible, and making sure his experience is not repeated.

“There has to be something more we can do to help people on the other side of treatment, especially with such limited support for regional people,” continued Paul. “Because you don’t know what to expect, you don’t know how it’s going to affect you. It’s got to be better.”

The CAN is made up of more than 150 Victorians affected by cancer who share their experiences and contribute to our work to improve outcomes in cancer research, prevention, and supportive care.

For Cancer Council Victoria’s Engagement Coordinator, Daina Patt, it is critical that the CAN involve people affected by cancer with a range of experiences.

“We want to increase our rural and regional representation within the Community Advisory Network to continue to build our understanding of different experiences and advocate for change, ensuring equitable care for all Victorians affected by cancer,” Daina explained.

“Without patient stories, we can’t advocate for change. People like Paul provide us with the evidence we need to implement change, by demonstrating the first-hand impact of our healthcare system.”

Since joining the CAN, Paul has contributed to the Accessing Cancer Care Equitably using Support Services (ACCESS) Project as a community representative. The project aims to support the health sector respond to increased demand for supportive care for people affected by cancer during the COVID-19 recovery.

“Paul plays an integral role in our work by representing the perspectives of those affected by cancer, providing advice and informing the project design and delivery,” continued Daina. “His experience of being diagnosed with cancer and living in a regional town is invaluable to the goals of the ACCESS project.”

“His insights into travelling for treatment, being away from loved ones, having limited access to supportive care in his region and managing the financial impact of cancer all act to amplify the voices of those in a similar situation.”

“Paul will help us improve outcomes for all Victorians living rurally and regionally.”

Get involved

By joining our Community Advisory Network and sharing your experience, you can contribute to our work in a range of ways and help improve cancer outcomes.

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