Most cancer services do exceptional work when patients are in the room. Appointments are careful, considered and led by skilled teams who know their pathways inside out. People usually leave with a plan. Or at least, they leave with part of one.
What tends to get less attention is what happens afterwards.
This matters because cancer is not rare. More than 420,000 people are diagnosed with cancer each year in the UK, which works out to someone hearing those words roughly every 90 seconds.
Behind each of those diagnoses is a long stretch of time that is not spent in clinic. It is spent at home, at work, or lying awake at night, trying to make sense of symptoms, side effects and next steps.
Between appointments is where things often feel hardest.
Why uncertainty feels louder outside the clinic
There is something containing about being in clinic. You are seen. You can ask questions. There is a sense, however temporary, that someone else is holding the situation with you.
Once you leave, that structure drops away.
Patients may be waiting for results, treatment decisions, scans, or the next appointment date. NHS cancer waiting time targets exist for a reason, yet they are not always met. Recent national figures show that only around 70 percent of patients start cancer treatment within the 62-day target, well below the standard that services are aiming for.
Those waits are not just logistical delays. They stretch time in a way that magnifies uncertainty. Every new ache can feel significant. Every unanswered question grows heavier.
I think this is where anxiety really takes hold.
Research consistently shows that anxiety is common among people living with cancer, and that it often peaks around moments of uncertainty rather than during treatment itself. A large UK analysis found that people with cancer experience significantly higher levels of anxiety than the general population, and that these effects can persist long after treatment ends.
This is not a fringe issue. It is a central part of the cancer experience.
Information gaps are not a failure of care
Patients often leave appointments with unanswered questions, not because clinicians have failed to explain, but because the cognitive load is high. People are tired, overwhelmed, or still processing the diagnosis itself.
Surveys support this. UK research has shown that the majority of people with cancer want as much information as possible about their condition and care, particularly around prognosis and what to expect next. Many also say they would like clearer access to information outside appointments, including better visibility of their records and more guidance once they are back at home.
In day to day practice, the questions tend to repeat.
- Is this symptom normal
- What should I do if it gets worse
- Who do I actually contact
- What happens next
These questions do not feel dramatic in isolation. But when they stack up without clear answers, anxiety grows.
What is striking is that addressing this does not require more appointments or longer clinics. Often it just requires making trusted, practical information easier to access at the moment it is needed.
When people cannot find answers, they look elsewhere
If patients cannot get timely reassurance from trusted sources, many will search online. That is understandable.
It is also risky.
Studies of cancer information on social media have found that around one third of popular cancer-related posts contain misinformation, much of it potentially harmful. A recent review reported that over 90% of people with a new cancer diagnosis were exposed to at least one form of misinformation during their journey.
Between appointments is where this exposure rises. Not because people are careless, but because they are anxious and looking for clarity.
This is where well designed digital support can make a difference.
Digital support works best when it feels almost quiet
The most effective digital tools in cancer care are rarely the loudest ones. They do not try to replace clinicians or make complex decisions on behalf of patients.
Instead, they focus on small, high impact support.
- Clear explanations in plain English
- Guidance on when to seek help and when something can wait
- Trusted answers aligned to local pathways
- Reassurance without false certainty
When done well, digital support reduces the mental effort required to decide what to do next. Anxiety does not disappear, but it becomes more manageable.
There is evidence that structured digital symptom monitoring and support can improve patient experience and outcomes, particularly outside clinic visits. Studies published in clinical journals have shown that remote symptom tracking can help patients describe concerns more accurately and prompt timely escalation when needed.
It is not about data collection. It is about confidence.
Carers sit in the gaps too
Carers are often navigating the same uncertainty, while trying to protect the person they are supporting. Research from Macmillan suggests that over 60% of carers for people with cancer experience a significant impact on their own lives, yet many receive little formal support.
Including carers in digital support does not require complex systems. Even a small, dedicated space explaining what to look out for, who to contact and how to cope can ease pressure.
Perhaps more importantly, it acknowledges carers as part of the pathway, not just observers.
Starting does not have to mean committing to everything
One of the most common concerns services raise is burden. Content governance. Risk. Maintenance.
That hesitation is understandable.
But meaningful support does not require a huge programme from day one. Many teams start with one pathway segment, a short set of frequently asked questions, and clear contact guidance.
Over time, content can grow based on real questions and real feedback. That in itself becomes evidence of patient centred design, something regulators and boards increasingly care about.
The space between appointments deserves more attention
Most patient experience does not happen in clinic. It happens at home, between letters, while waiting for results.
Supporting that space is not an optional extra. It is part of quality, safety and experience.
Digital tools will not solve everything. But used carefully, they can quietly strengthen the moments that matter most, without adding burden to already stretched teams.
And perhaps that is where the biggest opportunity still sits.
If this resonates, there are two practical next steps
If you recognise these challenges in your own service, you do not need to solve everything at once.
We have created two simple resources to support teams who want to strengthen support between appointments without adding unnecessary burden.
You can download the full guide, Supporting Patients Between Appointments: A Digital Guide for Cancer Support Teams. It explores the issues in more depth and shares practical approaches to digital support that complement clinical care, reduce uncertainty and fit into real world cancer pathways.
Or, if you are short on time, you may prefer to start with reflection. Our short online checklist, How well are we supporting patients between appointments in cancer care?, is designed to help teams pause and assess what is currently working, where gaps may exist and where small changes could make a meaningful difference.
There are no scores, no judgement, and no expectation of perfection. Just a structured way to think about a part of the pathway that often gets overlooked.
Sometimes starting with a clearer picture is enough.
FAQ:
Between appointments, patients and carers often face new symptoms, unanswered questions, and uncertainty without immediate access to reassurance. This gap can increase anxiety, even when clinical care is strong.
Clear, trusted information, simple guidance on when to seek help and reassurance about common symptoms can make a meaningful difference without adding complexity or workload.
Yes. When designed well, digital support complements clinical care by reducing uncertainty, preparing patients for appointments and helping them decide when to contact services.
Many services start small, focusing on high frequency questions, clear contact routes and simple symptom guidance. Even modest changes can reduce repeated queries and distress.
Support between appointments often overlaps across diagnoses. Services can begin with common needs, such as symptom guidance and emotional support, then tailor content over time.