Joshua Maxwell, a 24-year-old man with multiple health conditions, waited an agonizing 210 days for open-heart surgery at Westmead Hospital. As a child, Maxwell was born with a congenital heart defect. Since then his health has severely declined and now he has the additional challenge of autism, ADHD and a neurological condition. His surgeon had listed him as a category two patient. This designation means that his surgery has to be performed within 90 days.
Maxwell’s surgery was initially scheduled for January 23 of this year. Chronic delays have taken a toll on his mental health. As his body started to rebel against the cocktail of drugs that kept his strokes at bay, Lawrence became more and more hopeless. In November 2024, he reached out to David Harris, his member of parliament. He needed immediate assistance in finding him a surgery date. Maxwell contends that this letter was the decisive factor in finally securing the long-promised surgery date after months of delay.
A Struggle with Health and Waiting
Maxwell’s congenital heart defect has been a lifelong struggle. In subsequent years, as his health continued to decline, the need for surgical treatment became increasingly time sensitive. His case was determined to be category two, that is, he was not in imminent peril. The opportunity for headaches still loomed large.
“I don’t want to die, but I know that’s a real possibility,” Maxwell stated. This sentiment characterizes the weight of burden that he was under during his long wait to have surgery. He shared his experience of feeling stuck in a purgatory state in which it felt pointless to make plans moving forward. Luckily my personality didn’t allow me to panic because otherwise I would have become totally convinced that I was going to die. So, we made plans, but I planned nothing past that emergency surgery.
The toll of that waiting was bad enough, it was complicated by the symptoms he lived with every day. Every single day is a tightrope walk of symptoms and emotion waiting for that phone to ring. Maxwell shared his hardships in a letter to Harris. “My own family, friends and work are dying because of this impotence that I now carry,” he wrote.
Addressing Systemic Issues
Maxwell’s experience highlights a much broader systemic issue, one steeped in medical paternalism, across the entire healthcare system at Westmead Hospital. A spokesperson from the Western Sydney Local Health District (WSLHD) expressed sympathy for the distress experienced by patients such as Maxwell. “We understand how challenging it can be when patients wait longer than they expect for their procedure,” the spokesperson stated.
They acknowledged failure in communication with Maxwell about his surgery schedule. “We recognize that there were gaps in our communication to Joshua regarding his surgery,” they continued. This obfuscation adds to the confusion, anxiety, and frustration experienced by patients yearning for important procedures.
As health advocates have warned, these delays are symptomatic of larger issues within the healthcare system that are making it more inaccessible. Jenny King, a healthcare advocate, highlighted the need for better staffing and resources: “These things happen because there are inadequate staff to deal with the administrative load, the paperwork, and patients may be forgotten.” She reinforced that they do not have the staffing levels needed to meet community demands.
The Personal Toll
The consequences of long wait times go beyond the physical health. It can take a toll on patients’ mental health as well. Maxwell famously called his experience a “frozen hell.” He is sure it will be seared into every fetter of his mind and soul as long as life endures. He described how every day that passed without surgery was both traumatic and excruciating. While mind-opening, they were traumatizing. They were never-ending. They had very little joy and positivity,” he disclosed.
This emotional distress further translated to feelings of powerlessness. He compared his plight to someone tied to train tracks, unable to stop a fate worse than death from arriving on schedule. At times, it made me feel like I was handcuffed to the railroad. I was lucky to not finish my journey by accident because the route I took happened to not be the one the train was barreling down on!
Ryan Park, Minister for Health, expressed regret over the state of affairs: “We don’t want to see that happen to anyone and for that we are truly sorry.” His remarks recognize the systemic failures that led to this tragedy. They advocate for swift legislative and regulatory reforms that would help ensure such a disastrous episode never occurs again.
