🌟Patient Story: Navigating the Journey: A Patient's Story of Courage and Uncertainty
A lead clinician is a senior medical professional—typically a surgeon, oncologist, or another specialist—who takes overall responsibility for managing your cancer treatment.
At just 42 years old, Sione* finds himself standing at a crossroads. A proud Tongan father of five, Sione is known for his warm smile and dedication to his family. But today, he faces a challenge that shakes his sense of control: he’s preparing for life-saving head and neck cancer surgery. His journey to this moment has been anything but straightforward.
Sione first noticed something wasn’t right more than a year ago. Persistent soreness in his throat, difficulty swallowing, and a nagging lump on his neck prompted him to visit multiple general practitioners. Despite his concerns, his symptoms were dismissed as minor infections or stress-related issues. It wasn’t until he advocated for himself relentlessly that he was finally referred to a specialist. By then, the diagnosis was serious.
Adding to his anxiety is the complexity of navigating the health system. Referred from his regional hospital to a larger city facility, Sione feels like a small fish in a vast ocean. He’s unsure who is responsible for his care or who he can turn to with questions. The unfamiliar environment, combined with a whirlwind of appointments and consultations, has left him overwhelmed.
“I just want to know who is looking after me and what will happen to me,” Sione shares. “My family wants to understand too, so they can help me through this.”
Sione’s close-knit family has been his pillar of strength. His wife, parents, siblings, and extended relatives have rallied around him, ensuring he is never alone. Yet, the weight of being the family’s primary provider looms large in his thoughts. He worries about the financial strain his treatment and recovery might place on them.
Sione’s surgeon has explained the plan for his operation, but he’s deeply concerned about the aftermath. Will he be able to speak clearly? Eat normally? Return to work? The uncertainty feels like a second diagnosis.
This story is not unique. Many patients referred to city hospitals for specialised care feel adrift, unsure of how to navigate the complexities of a fragmented health system. Knowing who the lead clinician is—a single point of contact who coordinates care and answers questions—can provide much-needed clarity and reassurance.
If you or someone you know is feeling lost in the system, remember these steps:
Ask for the name of your lead clinician. This person is your point of contact. If you're unsure who they are, ask any health professional you meet during your care.
Write down your questions. Bring them to each appointment so you can focus on what matters most.
Lean on your support network. Whether it’s family, friends, or a support group like ours, there’s strength in connection.
Sione’s journey continues, and so does his courage. His determination to face the future, supported by his family and medical team, is a reminder of the resilience within us all.
If you’ve faced similar challenges or have tips to share, we’d love to hear from you. Together, we can strengthen our community by sharing knowledge, support, and compassion.
*Sione’s name and some details have been changed to respect his privacy.
Our Trust has been working closely with Te Aho o Te Kahu to improve the way head and neck cancer patients are cared for within the health system. One of the key outcomes we’ve agreed on is the introduction of a lead clinician for each patient. This is a significant step forward in ensuring that every patient receives consistent, coordinated care throughout their cancer journey.
