Role of carers in the healthcare system: the person sitting beside the patient

On Public Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong, Lori Funk Cirefice, President of the World Bladder Cancer Patient Coalition, hosted: “Role of carers in the healthcare system” with Laurent Gemenick and David Garrigues Ronda, the couple who co-founded CANVES, Spain’s first bladder cancer support group. Laurent is the patient. David is his carer.

Lori opened with the premise the whole Forum had been circling: a bladder cancer diagnosis does not land on one person. It reaches partners, parents, children and friends, and the people around the patient live the illness too. She spoke from experience, having been a carer twice over, for her partner and for her father.

What a carer actually does

Asked to describe an ordinary week, David started not with tasks but with listening. Beyond that, the work is concrete and constant:

• Organising the medical calendar, booking and keeping track of appointments.
• Filtering information. A patient searching online can quickly get lost, so David took on finding reliable information and sorting what was useful from what was not.
• Preparing the questions before each consultation, so nothing important got forgotten in the room.
• Being there. From the very first appointment, they went together. Their jobs allowed it, which David recognised as real luck, since many carers cannot take the time.

Lori recognised all of it. The organising, the research, the managing of daily life around the illness tends to fall to whoever is accompanying the patient. That person is living the disease too, she said, just differently. Not affected physically, but affected psychologically.

Two people, one consultation, two different memories

The heart of the session was what happens inside the consultation room, and afterwards.

Laurent described the patient’s experience of hearing a diagnosis. You hold on to the negative. You fix on the darkest words the doctor says, and by the time you get home much of the rest has gone. “In the end, it is your interpretation,” he said. What changes that is having someone else who heard exactly the same conversation. You can compare, check what you understood, and find out whether the darkest version was even accurate.

That is why, in the evening at home, the two of them would go back over the appointment together and reconstruct what was actually said. David would say what he had heard, Laurent would say what he had heard, and the difference between the two was often the point.

They also took a practical tool from the Coalition: going into consultations with a written list of questions. David takes the notes, because the patient rarely can, and asks the questions too. The result is that they leave with information that is clear rather than half-remembered.

Talking about it from day one

Both were clear that their first instinct after diagnosis was to tell people, and that it helped enormously. Each opened up to their own family and friends, and they spoke about it at work. Doing so put them in touch with others going through similar experiences, which David said opens your mind and helps you understand what is happening to you.

Support came from beyond the immediate circle too, including online groups where patients and carers exchange experience. That instinct to talk is, in many ways, what led the two of them to found CANVES.

What patient organisations can do for carers

Asked how organisations like ours can support carers specifically, David’s answer was direct: give them the right information. Not only material aimed at patients, but material that answers the question a partner, parent or friend is actually asking, which is what can I do for this person?

The conversation then turned to a more delicate area, what patients choose not to share even with the people closest to them, something Lori knows well as the daughter of a patient.

Going to an appointment soon? Our factsheet Key questions to ask your doctor or nurse is designed for exactly the moment David described, and works just as well in a carer’s hands as a patient’s. You can find it alongside our other patient and carer resources, free to download and available in a growing number of languages.