After a decade as one of the founding Representatives of the National Register of Palliative Care Consumers and Carers, Deb Letica reflects on what joining gave her, and why more people should consider doing the same.

Deb Letica describes herself as a curious person. Someone who asks why and then goes looking for the answer.

It’s what led her to palliative care. And it’s what led her to do something most people never think to do: turn her brother's story into something that’s improving the system for everyone.

Deb's younger brother, Steve, had been living with a learning disability his whole life. Then came a diagnosis of leukodystrophy, a rare and progressive condition that would slowly change everything. Over time, he lost the ability to swallow, to feed himself, to move through the world the way he once had.

Deb stepped into the role of sibling carer, an overwhelming and unpredictable one.

“Nobody knew how long he had," she says. "We didn't know what his future quality of life would look like, what plans we needed to make, or how to support him as best we could. It was just an evolving process.”

When palliative care came in to support Steve at his group home, Deb expected it to be about managing the end of his life. “A lot of people think it means end of life care,” she says. “I thought that too, and I was a bit scared to look.”

Pretty soon, though, it was obvious to her that palliative care is more than most people realise.

“It’s not just about end of life,” she says. “It’s about living as well as you can for as long as you can.”

Steve went to West Coast Eagles games, attended a Residents' Ball, and spent time with his carers doing the things he loved most. Things that, without that support, might never have happened.

Deb says she watched her brother come alive again. And, as is her nature, the more she experienced palliative care the more curious about it she became.

Saying yes to the Register

It was that curiosity that led her to the National Consumers and Carers Register with Palliative Care Australia.

It was 2013. Deb had no clinical background, no university degree, and no clear idea of what she was getting herself into. But she had seen firsthand the gaps in healthcare for people living with intellectual disability and she wanted to do something about it.

“I wondered whether joining would make me more anxious about everything,” she says. “But the opposite turned out to be true.”

Deb says one of the most surprising things about joining was that she found a community of people who understood. People who had been through something hard and decided to do something with it. They met regularly, mostly via Zoom, sharing stories, hearing updates on Palliative Care Australia’s strategic work, and contributing their perspectives to how palliative care is shaped at a national level.

“You realise you’re not the only one who feels isolated or overwhelmed,” she says. “It was reassuring. Over the years that followed, including after Steve passed away in 2019, that community became a source of real support."

She also began to understand something she says she wishes she’d known far earlier: that her experience as a carer has real value. The gaps she’d noticed, like the support that hadn’t reached her and the parts of care for her brother that hadn’t worked, were exactly the kind of insights the system needed to hear.

“I really wish someone had told me at the beginning that my lived experience was important, that it was valuable.”

What her involvement made possible

Over the following years, Deb’s involvement with the Register opened doors she could never have anticipated.

She began collaborating with researchers at UNSW's National Centre of Excellence in Disability Health on a project focused on improving palliative care access for people with intellectual disability, a group who can die up to 30-years earlier than the general population yet remain significantly underserved.

It was a gap Deb had seen up close. Support workers caring for people like her brother, many from overseas trying to navigate an unfamiliar health system, often had little guidance when it came to palliative care. The project produced practical toolkits and resources aimed directly at that need.

“It was a ‘seen but not heard’ kind of thing,” she says. “But now it’s changing.” And it’s a change she's proud to have played a part in.

Why it matters

Deb has recently stepped back from her role as a Representative. Looking back on more than a decade of involvement, she sees fear as the barrier for people getting involved. Fear that you're not qualified, that you don't know enough, or that your grief is too raw, too recent, or too personal to be useful.

Deb knows because, in the beginning, she felt all these fears herself.

“I couldn't even speak publicly when I started,” she says. “Now I just go for it.”

“If we don't speak up and share our stories,” she says, “it's a really sad world.”

Being involved also gave her a new perspective on her own life. “It's given me a lightbulb moment,” she says. “This is going to happen to all of us, eventually. It’s helped me make plans, and to celebrate life the way I'd like it to be celebrated.”

Ten years ago, she almost didn’t apply. Now, she says it’s something more people should consider. “Think about the loved one you've cared for. What would they want your life to look like? Would they want you to use that experience to make the world a better place?”

“It's the best thing I've ever done.”

ENDS

Interested in becoming a consumer and carer representative?

Palliative Care Australia (PCA) is seeking Expressions of Interest from people who want to improve palliative care for individuals, families, and communities across the country.  

The National Register of Palliative Care Consumers and Carers (NRPCCC) plays an important role in advising PCA and external organisations on health policy, service design, projects, research, and more. Members of the Register provide guidance and expertise and help shaping the health system that delivers high-quality palliative care for everyone who needs it. 

Learn more the NRPCCC

Apply to become a member