Patient care journeys: when diagnosis takes 5 years

There’s a number that came out of my master’s research and stuck with me: people with Irritable Bowel Syndrome (IBS) can have symptoms for five years before getting an official diagnosis. In Portugal, the wait for a gastroenterology appointment can exceed 600 days. The direct cost of IBS in the UK runs at £1.2 to £2 billion a year.

These numbers only showed up when I sat down to map the actual patient journey, from first symptom to last appointment. Before that, it just felt like “it takes a while”. After, you see a whole system failing in predictable ways.

This post is about what you learn doing this work. The case is IBS because it’s mine, but the methodology applies to any chronic condition.

What is a patient care journey

A patient journey is the sequence of events a person goes through, from the moment they realise something is wrong to the moment they live with the condition (or stop). It includes:

• Initial symptoms: what they felt, when, how they reacted.
• Seeking help: GP, A&E, internet, family.
• Diagnosis: when, by whom, with how much confidence, with how much friction.
• Treatment: what options were offered, what worked, what didn’t.
• Self-management: day-to-day between appointments, at home, at work.
• Crises: what happens when symptoms get worse, who’s available.

Mapping this isn’t a persona with a linear arrow. It’s a diagram with mistakes, loops, dead-ends, waiting points. It’s ugly. And that’s why it’s useful: it shows the system as it is, not as we’d like it to be.

The IBS case: five years to “you have IBS”

Saha (2014) described the typical IBS path: the person notices food intolerances or changes in bowel habits. Goes to the GP. The GP, faced with non-specific symptoms, hesitates. Runs tests, books more, refers. Tests rule things out (because IBS is a diagnosis of exclusion), but IBS itself has no test. Five years later, with life already adapted to the condition, someone finally says: you have IBS.

What this triggers in the journey:

• Prolonged self-doubt. “Is it just in my head?”
• Unsupervised coping strategies. Restrictive diets, social avoidance, self-medication.
• Misdiagnosis. Treatments for other things that don’t work.
• Erosion of quality of life. Five years is a whole university degree.

When diagnosis finally comes, another phase opens: trial-and-error with diet (low FODMAP, elimination), medication (antispasmodics, antidepressants via the gut-brain axis), therapies (CBT, mindfulness). All highly individual. What works for one doesn’t work for another.

What the designer extracts from these maps

When you map this, four things jump out. They orient the design work.

1. Predictable friction points. Where do people give up or stall? With IBS: the first GP visit (vague symptoms), the exclusion-tests phase (long wait, anxiety), post-diagnosis (no structured self-management support).

2. Support gaps. Where does no system serve the person? Between appointments. During a flare-up at 1am. Trying to navigate dietary restrictions at a dinner with friends. These gaps are the ground where digital products can step in.

3. Critical moments. Not every moment carries the same weight. An emotional crisis after misdiagnosis, a severe flare-up while travelling, the first week after a medication change. These are the points where the interface has to be excellent. The others, where it just has to work.

4. Intervention opportunities. Where can a digital tool make a difference? Symptom tracking for patterns. Conversational support during crises. Education about self-management between appointments. Peer-to-peer community.

How to map in practice

The methodology I used (and recommend) is direct:

1. Semi-structured interviews with patients (5-8 people is enough for clear patterns). Focus on personal narrative, not checklist.
2. Empathy maps per person: what they say, think, feel, do, in each phase.
3. Synthesis: patterns that repeat in 3+ people become points on the consolidated journey.
4. Validation: go back to two people and ask “does this make sense to you?”
5. Visualisation: a diagram with phases, durations, actors, friction points, emotions.

I go deeper into recruitment and ethics in Designing with patients, not for them. On how the Empathise phase fits into the rest of the process, see Design Thinking in healthcare.

What not to expect from the map

Three warnings:

• It’s not a solution. It’s a diagnostic. Don’t jump from the map to wireframes without going through define + ideate.
• It’s not stable. The journey changes as new treatments enter (apps, conversational AI, biomarkers). Remap every so often.
• It’s not universal. Your IBS map in Portugal is different from the IBS map in São Paulo or Berlin. Different health systems, different paths. Be careful with generalisations.

To get started

Three steps:

1. Pick a condition you know well (personal, family, professional).
2. Run three long interviews with people who live it.
3. Draw the map with symptoms, appointments, tests, medication, crises, self-management.

You’ll see things even your PM hadn’t seen.

More on the background in the Design for Health guide. On accessibility in health (an important part of the journey for many), see Accessibility beyond contrast and The crucial need for designing for ageing. On biodesign as a complementary approach, see Biodesign in healthcare practice.