Navigating complex cancer care: Why personalised support matters
Tony and Janet’s Story
Tony and Janet’s experience of navigating the cancer care system is both deeply personal and powerfully instructive. Their journey reveals how easily people can fall through the gaps when care is fragmented, and how transformative personalised, coordinated support can be.
WATCH the film we made with Tony and Janet below:
A life transformed
In 2023, Tony, aged 80, underwent major surgery for cancer of the jaw. The operation saved his life, but it also changed it dramatically: he was left unable to eat or drink, reliant on a feeding tube, and limited in speech.
Tony's wife, Janet, suddenly stepped into the role of full-time carer, responsible for complex clinical tasks she had never been trained to perform. No one had prepared her. No one had explained what would happen next.
Over the next year, Tony and Janet had contact with 32 different teams across 10 services, travelling thousands of miles and repeatedly relaying their story to new professionals. Their experience shows how overwhelming care becomes when it lacks coordination - and how vital a personalised approach is for patients with complex and lifelong needs.
The human cost of fragmented care
A central theme in Tony and Janet’s story is the emotional and physical toll of fragmented care. After Tony’s discharge, no clear treatment or support plan was put in place, and no one was assigned to oversee his ongoing needs.
Each new professional understood only a fraction of the picture. Janet was left to fill the gaps - coordinating appointments, chasing referrals, managing equipment, and making clinical decisions she felt unqualified to make.
The couple’s rural location compounded the problem. Tony required frequent suctioning for mucus build-up, yet local services either couldn’t support him or weren’t aware he needed help. This resulted in over 150 hospital visits, often to different hospitals on different days of the week, simply to receive basic care. One consultant even suggested they “consider moving closer to Lincoln,” highlighting how geography - not clinical need - dictated the support available.
The stress of this inconsistent care culminated dramatically on Christmas Eve, when Tony experienced a terrifying choking episode that led to an emergency hospital visit - an incident that might have been prevented with earlier recognition of his needs.
The power of personalised, proactive support
The turning point in Tony and Janet’s journey came when they connected with a Specialist Neighbourhood Nurse in Spalding. For the first time in many months, someone took the time to listen, to understand their priorities, and to look at Tony’s needs holistically.
The nurse organised equipment maintenance, arranged communication support, facilitated funding applications, and helped complete vital documentation such as a ReSPECT form.
This personalised, relationship-based support made an enormous difference. Janet finally felt seen, heard, and supported. Services began to align around Tony rather than the other way around. With the right referrals and joined-up thinking, long-standing issues - such as Tony’s severe mucus production - were finally investigated properly, leading to the diagnosis and treatment of a bacterial infection that had gone undetected for nearly a year.
This one relationship exemplifies what good care coordination looks like: someone who holds the full picture, anticipates needs, and ensures the system responds proactively.
Recognising and supporting carers as partners
At the heart of this story is Janet. She became, in effect, an unpaid clinical worker, responsible for suctioning Tony’s mouth multiple times a day, managing his feeding tube, monitoring infections, and coordinating dozens of services. Yet she received almost no training, no emotional support, and no clear acknowledgement of her role until many months into the journey.
Janet’s experience shows the urgent need for carers to be recognised as essential partners in care. Carers require:
- Clear information before hospital discharge
- Training in clinical tasks they are expected to perform
- A single point of contact for questions and emergencies
- Emotional and mental health support
- Flexible services that consider their lives and commitments
When Janet tried to arrange short-term support so she could attend a family wedding, every service she contacted said no - either Tony did not meet their criteria, or they could not offer out-of-hours care. Ultimately, Tony’s brother learned to perform the suctioning, illustrating how family members repeatedly filled gaps left by rigid service boundaries.
Carers are not an “optional extra” in the health system. They are central to it. And their well-being directly affects the well-being of those they care for.
The need for a single lead professional
Perhaps the most striking lesson from Tony and Janet’s experience is how profoundly different their journey could have been if they had been assigned a single lead professional - someone responsible for coordinating and personalising Tony’s care from diagnosis through recovery.
There were numerous ways a lead could have improved Tony and Janet's journey including:
- Ensuring Tony had communication support before losing his speech
- Preparing Janet for her caring responsibilities well in advance
- Escalating concerns about mucus early, leading to timely treatment
- Coordinating physiotherapy, equipment, medication formats, and home adaptations
- Making sure Janet knew about financial entitlements and practical support
- Introducing equipment options, such as a more suitable permanent feeding tube, much earlier
A single, knowledgeable, proactive professional could have prevented months of stress, unnecessary hospital visits, and emotional exhaustion.
Designing care around what matters to people
Personalised care begins with understanding what matters most to individuals and families. Tony and Janet’s story shows what happens when this does not occur: care becomes reactive, fragmented, and shaped by service criteria rather than human needs.
Had clinicians taken the time at the outset to ask “What matters to you?”, they would have learned:
- Janet needed training and reassurance before surgery
- Tony’s rural location required careful planning to avoid excessive travel
- Communication support would be crucial post-surgery
- Their priority was staying together safely at home
By centring people’s lives - not just their conditions - health services can deliver care that is both more effective and more humane.
Conclusion: Learning from Tony and Janet’s experience
Tony and Janet’s story illuminates both the fragility and the potential of our cancer care system. It reveals how easily people can be overwhelmed when support is fragmented - and how dramatically things improve when care is coordinated, compassionate, and tailored to individual lives.
Tony and Janet's experience highlights three urgent priorities:
- Assign every patient with complex needs a single lead professional.
- Recognise and support carers from the very beginning.
- Design services around what matters to people, not organisational boundaries.
Tony and Janet chose to share their story in the hope that others will benefit from what they endured. Their courage offers the health and care system a powerful opportunity: not simply to acknowledge the gaps, but to close them, so that every individual receives care that feels connected, personal, and human.
