Bladder cancer patient voice at BLADDR21 congress
The World Bladder Cancer Patient Coalition (WBCPC) was pleased to be present at Global Congress on Bladder Cancer 2021 on October 14-15 in Ghent (Belgium). It was also the first time WBCPC was participating at an event in-person since 2019. The theme and focus of the congress this year was turning new data into daily practices. The program consisted of state-of-the-art lectures, case discussions, and panel debates with international & multidisciplinary experts, including a session with bladder cancer patients and patient representatives.
The session about “What really matters to patients for whom cystectomy is planned”, Melanie Costin brought the perspectives and voice of bladder cancer patients to the discussion. Melanie is a bladder cancer patient. She also leads patient support services at the WBCPC founding organisation Fight Bladder Cancer. FBC is a charity in the United Kingdom, founded and run by bladder cancer survivors and their families.
Guiding bladder cancer patients to information
During this session, joined by a fellow bladder cancer patient, urology nurse, and uro-oncologist, Melanie stressed that information is crucial for patients diagnosed with bladder cancer. Guiding patients to the right information, especially to patient groups, is essential. It may help patients fully understand what will happen to them and the impact of cystectomy on their daily life. She highlighted that discussing it with other people who have been through the same journey is particularly beneficial during the diagnosis but also recovery phase. Melanie concluded the discussion by sending a message to the healthcare professionals in the audience:
«Of course, you have to focus on the cancer and on saving a life but please also remember the life that you are saving. These are people who go home after, and it is important that they have a “life”. It is not just about finding a cure; it is about how these bladder cancer patients are going to be and feel in the long term. Please just remember that when you close that door, these people still have the rest of their life to live.
Melanie Costin, Bladder cancer patient and patient support services manager, Fight Bladder Cancer
Capturing and strengthening patient voices
The Global Congress on Bladder Cancer 2021 was also a unique opportunity for WBCPC to connect with urologists, urology nurses and oncologists working with bladder cancer patients every day. To amplify the patient voice, the WBCPC has recently launched a Global Bladder Cancer Patient Survey, soon to be available in 11 languages.
Our Start-up guide for bladder cancer patient groups is another element in support of strengthening patient voice and supporting the establishment of strong bladder cancer patient groups to provide credible information to people affected by bladder cancer. Bladder cancer groups across the globe, small and large, have an important role to play in improving the situation for patients and their families.