NSW Health Secretary urges more focus on patient experience, drawing from her own heart valve disease journey

In a heart-warming event that united patients, their loved ones, representatives from patient organisations and employees, Edwards Lifesciences hosted its annual Patient Experience Day.

Pat Williams, Vice President ANZ & Korea at Edwards Lifesciences, opened the event with a warm welcome, saying “We remain very focused in the areas of the structural heart and critical care. We kept this focus because we know that there’s a bunch of underserved patients with these diseases, and we’ve got a lot more work to do to improve this care for these patients.

“We want to go away learning about your journey so we can improve into the future for the next generation of patients. It’s more than just the company with the product – it is us caring about you, about your journey, and also about the health of people in the future.”

NSW Health Secretary, Susan Pearce AM, shared her personal and emotional journey, 22 years after undergoing valve replacement surgery for mitral valve regurgitation as a young patient.

“How people feel about the care they receive [in hospital] is every bit as important to me and to the people that I lead, and there is a lot more we can do in that space,” she emphasised.

Starting her working life as a registered nurse in Broken Hill in 1991, Ms Pearce’s career took her from ICU and coronary care to her current executive role. However, like many health professionals, she found herself a patient in her own specialty. Diagnosed at 16 with a heart murmur, her condition became critical in her early thirties.

“I started to have these pre-syncopal episodes, feeling faint while driving,” she recounted. “I had just moved to Sydney and found a cardiologist, Terry Campbell, at St Vincent’s. He listened to my chest once and said, ‘You’re going to need surgery.’”

She further explained, “I had severe mitral regurgitation and had already done a bit of damage to my left ventricle. I was just 32 years old when it happened. My dad also had a mitral valve issue that lasted much longer before it failed. I was worried about the procedure and being on medications, but in March 2002, I had heart valve surgery. Here we are, 22 years later, and it’s still functioning.”

Ms Pearce described a particularly challenging post-operative period, marked by a harrowing experience of unrecognised complications.

“About ten days post-op, I started feeling very unwell with severe diarrhoea and vomiting. One day, I got up and thought, ‘I’m going to die.’ That feeling of impending doom was terrifying,” she recalled.

She was taken to a local hospital, where her symptoms were initially dismissed.

“I looked like hell and felt worse. Despite my typical presentation, I wasn’t taken seriously until my husband insisted they call my cardiologist. An echo revealed I had a tamponade – my heart’s protective sac had filled with fluid,” she said.

Ms Pearce’s ordeal continued as she struggled to get proper care. She continued, “They couldn’t get me an ICU bed, and my husband had to drive me across Sydney with a potentially fatal condition. I definitely should not be standing here talking to you today.”

In the midst of this chaos, Ms Pearce experienced moments of profound care that left a lasting impression. She fondly remembered “a male registered nurse at St Vincent’s put a warm blanket on me and his hand on my arm. He said, ‘You’re going to be okay.’ It was the first time I felt safe in days.”

This experience profoundly shaped Ms Pearce’s perspective on patient care. She said, “That overwhelming sense of safety was so profound. It made me realise that while clinical expertise is crucial, what patients are really looking for is safety when they’re scared and vulnerable.”

Ms Pearce’s journey inspired her ongoing commitment to improving patient care in her role as Secretary of NSW Health.

“Despite all our metrics and measures, how people feel about the care they receive is every bit as important,” she emphasised.

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