Patient experience week: listening, learning, and leading with Compassion

This week, we mark Patient Experience Week by recognising the importance of delivering high-quality care to people living with bladder cancer, focusing not only on access to treatment but also on the overall care experience.

Improving the patient experience goes beyond clinical pathways. It includes fostering dignity, empathy, and ensuring that individuals feel seen, heard, and supported from the moment of diagnosis and throughout their care journey.

At the World Bladder Cancer Patient Coalition, we work alongside patients, caregivers, and advocates worldwide to promote the importance of compassionate, person-centred care and its role in improving outcomes and quality of life.

Seeing the Person Behind the Diagnosis

For too long, the bladder cancer experience has been shaped by silence, stigma, and delayed diagnoses. Many symptoms, such as blood in the urine, pain during urination, or pelvic discomfort, are often misunderstood or dismissed. This delay in recognition and diagnosis has a direct impact on outcomes and experiences.

That’s why awareness matters.

This Patient Experience Week, we encourage everyone to take a moment to learn the signs of bladder cancer:

• Blood in the urine (even once)
• Burning or pain when urinating
• Persistent pelvic or lower abdominal pain
• Unexplained weight loss or fatigue

These symptoms may not always be cancer, but they always deserve attention. Knowing when to seek medical advice can lead to earlier diagnosis, quicker access to care, and a better chance at recovery.

Care beyond hospitals

The patient experience doesn’t end at the hospital door. For many, it’s what happens after the appointment, or between treatments,that defines their journey.

Support groups, peer conversations, and access to reliable, understandable information are key to helping patients feel less alone and more in control. Community can provide comfort. Connection can inspire hope.

That’s why we developed the Start-up Guide for Bladder Cancer Patient Groups, a resource built by and for the patient community. Whether you’re looking to start a new support group or strengthen an existing one, the guide offers practical advice, inspiration, and tools to help bring people together.

A call to listen

This week,and every week, we invite healthcare professionals, policymakers, and communities to listen closely to the people behind the diagnosis.

Let’s celebrate Patient Experience Week by reaffirming our commitment to care that is compassionate, collaborative, and centred on what matters most: people.

We invite you to share your bladder cancer patient story with us!