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Improving information and support for people with urostomies

Guest blog from Dr Lydia Makaroff, Fight Bladder Cancer’s CEO

Some of our recent research has shed light on significant gaps in patient education, particularly regarding the impact of urinary diversions on sexual health. This research was part of the first global survey led by the World Bladder Cancer Patient Coalition, aimed at documenting the comprehensive experiences of bladder cancer patients.

The UK-specific findings from this survey reveal that many people undergoing radical cystectomy — a common treatment involving urinary diversion — are not adequately informed about the potential sexual side effects of this procedure.

Key findings from the survey:

  • Lack of pre-surgical counselling: Over half (52%) of the people who underwent a radical cystectomy reported that they were not counselled on the potential sexual side effects of the surgery.
  • Limited treatment discussions: Nearly half (47%) of the people felt that radical cystectomy was presented as the only treatment option, indicating a need for more comprehensive discussions about all available treatments and their implications, including impacts on sexual health.
  • Information needs: A majority of respondents (59%) expressed a need for more information about treatment options and durations, with 41% wanting more details about the side effects of treatment.
  • Emotional and psychological support: Approximately 47% of people felt that the long-term emotional impact of bladder cancer treatment had not been adequately addressed, particularly concerning changes in sexual health and intimacy.

I recently had the pleasure of meeting Samantha Sherratt, the new Transformation Director at the Urostomy Association, to discuss how we can work together to enhance support for the urostomy community. Our conversation revealed a shared commitment to improving patient education and support around the lifestyle and health impacts of urostomies. These are some of the ideas we discussed:

  • Highlight patient-centred guides: We need to better distribute our guides that specifically address urinary diversions and their effects on sexual health. These guides should be part of the information provided to people as they consider their treatment options, especially before any surgical intervention.
  • Enhance pre-surgical education: It is crucial that all people being considered for radical cystectomy receive thorough counselling about the potential sexual side effects, as part of a wider discussion on treatment options and their impacts.
  • Strengthen support networks: Working with healthcare providers, we must promote and facilitate access to peer-support and charities that offer emotional and psychological support, focusing particularly on adjustments in sexual health post-treatment.

This meeting marked a significant step providing more comprehensive support for individuals living with urostomies. I left feeling invigorated and optimistic about the positive changes we can bring to our communities.

If you would like more detailed findings from our survey or wish to get involved, please visit our website at