Partnering with patients to provide quality of life

Living with incontinence means thinking ahead. About access, timing, supplies, and what happens if things don’t go to plan. Dr Dinesh Palipana knows this from both sides of the healthcare system, and argues continence management should always be guided by the life a person wants to live.

Trigger warning: car accident

Continence, Dr Palipana explains, does not exist in isolation. “There’s a flow-on effect into so many areas of life: work, travel, relationships, body image. Continence isn’t just a medical issue; it shapes how you move through the world."

With that in mind, he advocates that healthcare should support a patient’s ‘dream life’, rather than imposing limits on what that life should look like.

Born in Sri Lanka, Dr Palipana migrated to Australia and began his professional career as a lawyer, before switching to medicine. While in medical school, he was involved in a life-changing car accident that resulted in a spinal cord injury. He later became Queensland’s first medical intern with quadriplegia and now works as a doctor, lawyer, disability advocate and researcher, bringing lived experience and professional expertise to his work across healthcare and policy.

“When you sustain a spinal cord injury at 25, you don’t expect to suddenly be incontinent. You don’t really understand what that means until you’re living it,” he says.

“It was genuinely life-changing. At first, it was incredibly hard to adjust, especially using a urinary catheter. Learning how to manage it, deal with infections, and come to terms with having a tube inside my body 24/7 was confronting. As a young guy, that was one of the toughest parts to accept,” he says.

“For me, getting continence right has been a really important part of me working, living life, having relationships, and getting out into the community and to the world.”

Navigating systemic barriers

Dr Palipana’s dual background as a lawyer and a doctor gives him a unique perspective, and a powerful toolkit, for advocacy and change. He has served as a senior advisor to the Disability Royal Commission, using his legal expertise to address broader systemic issues while relying on his medical knowledge to understand the realities of patients’ everyday lives. Beyond his work as a doctor and researcher, Dinesh Palipana has become a leading voice in disability advocacy. He is an ambassador for the Human Rights Commission’s IncludeAbility program and was a founding member of Doctors with Disabilities Australia.

His efforts to advance inclusion and accessibility have been widely recognised: he was awarded the Medal of the Order of Australia in 2019, became the third Australian to receive the Henry Viscardi Achievement Award, and was named Queensland’s Australian of the Year in 2021.

Through this work, he highlights the practical and systemic challenges that too often go unseen. For example, in rural and regional areas, access to continence supplies and specialist care can be limited.

"Even where services are available, funding through the NDIS for essentials such as catheters, or for the time required for bowel care, can fall short. These are not minor inconveniences; they are the factors that determine whether a person can live independently, safely, and with dignity," he says.

"In healthcare our job is to facilitate the best life for someone, not tell them the life they can live.”

Taking a collaborative approach

While he was provided with basic tools and information following his accident, the nuances of daily life required the support of his family and friends who surrounded him. It’s a collaborative approach that he carries into his professional life, where he views the doctor-patient relationship as a partnership rather than a hierarchy.

“Before the 1940s, people with spinal cord injury had a very short life expectancy. So, someone like me, they would live for a couple of months, maybe a little bit longer. It is actually good continence management that has extended people's lifespans a lot,” he says.

But taking a one-size-fits-all approach is not the way to go, he argues. Helping someone manage their condition is as simple as asking what they want.

“Do they want to fly a plane? What kind of job do they envision? What matters most in their relationships?” he says.

Once you have that information, continence care plans, such as intermittent catheterisation, suprapubic catheters, or urethral options for bladder management, can be tailored to support the life the person wants.

“I think it’s about partnering with your patient to make sure they’re living the life they want. It starts by asking: what do you want to achieve in your life? What would your ideal days look like?

“From there, we can develop a plan - X, Y and Z might be the best approaches for bladder management, and similarly for bowel management. The goal is to create a life around the patient’s priorities, not the other way around,” he says.

Dr Palipana's advice is simple, "When talking to your doctor, be sure to let them know what your 'ideal day' looks like so you can plan together to make it happen."

Also in this edition: