“If you can’t find a support group, start one!”
“I got lymphoma and wanted a local support group,” David recalls. “There wasn’t one in Byron Bay, so I decided to start my own.” The act of creating a cancer support group became the first step in his advocacy journey.
Working with the Cancer Council, he established groups in Byron Bay, Ballina, and Lismore, quickly discovering the challenges faced by volunteer-driven support networks.
The challenges of grassroots advocacy
David’s experience revealed significant gaps in support infrastructure. “I wanted administrative support – help with promotion, getting radio interviews, putting up posters,” he explains. “But organisations often work within strict remits, leaving volunteers to shoulder most of the work.”
Self-advocacy
His online research became another critical component of his advocacy. After receiving an initial incorrect prognosis, David learned to navigate medical information effectively, joining international forums and finding a clinical trial that ultimately improved his treatment. This personal experience taught him the importance of self-advocacy and the value of access to information.
Navigating complex healthcare systems
As David became more involved, he witnessed the profound disconnection between different healthcare sectors. “The communication between GP, specialists, hospitals, and pathology labs is fragmented,” he says. “Patients often get lost in these systemic silos.”
His work with organisations like the Leukemia Foundation and the Cancer Institute’s Advocacy Committee allowed him to push for systemic improvements. He became known for providing direct, constructive feedback—a skill he believes is crucial for effective consumer representation.
The emotional labour of health consumer representation
David is candid about the emotional dimensions of his work. “It’s not always easy,” he admits. “You get passionate about fixing things, and sometimes that passion can consume you.”
He emphasises the importance of maintaining personal boundaries while remaining committed to making a difference. Interestingly, David doesn’t view his advocacy as purely altruistic. “Most of my work is about giving myself purpose,” he says. “I’m lucky that it benefits others, but fundamentally, it makes me feel good and keeps me engaged after retirement.”
Challenges for consumer advocates
One significant issue David highlights is that sometimes there is a lack of recognition for consumer advocates. “We’re often expected to contribute our time and expertise for free,” he explains. “While organisations appreciate our ‘lived experience’, that appreciation doesn’t always translate into tangible support.”
His advice for emerging consumer representatives is straightforward: “Be passionate. Believe you can make a difference. Express your anger diplomatically. Find a mentor and build a support network.”
Systemic change and personal impact
David’s representative work spans multiple levels – from supporting individual patients to influencing policy. He’s worked with federal and state governments, participated in research committees, and continuously pushed for more patient-centred approaches. “The healthcare system is slowly changing,” he notes. “Initiatives like digital patient records and more comprehensive clinical trial information are steps in the right direction. But we need continued pressure to ensure these changes truly benefit patients.”
Looking forward
Despite the challenges, David is optimistic. He sees a growing recognition of consumer representatives’ value, particularly the importance of lived experience in shaping healthcare policies. “We need more people willing to speak up, to share their experiences, and to challenge the status quo,” he says. “Every voice matters in creating a more responsive, compassionate healthcare system.”
