We extend our heartfelt gratitude to everyone who supported the Fight Bladder Cancer event at the Houses of Parliament, which took place last week during Bladder Cancer Awareness Month. This significant event aimed to elevate the conversation about bladder cancer, ensuring it becomes a priority on the parliamentary agenda. Our goal was to secure commitments from MPs to help achieve our policy objectives.
Event Details
The event was held on Tuesday, 21st May, from 2 PM to 4 PM in Room M of Portcullis House, located at 1 Victoria Embankment, London. Volunteers gathered at 130 PM to enter the venue together, ensuring a united front. Andy McDonald, MP for Middlesbrough, graciously sponsored the event, providing a vital link to Parliament.
Attendees and Patient Advocates
The event saw the participation of key patient advocates, including:
Pamela McGowan, Volunteer, Fight Bladder Cancer
Anne MacDowell, Volunteer Strategic Advisor, Fight Bladder Cancer
Andie Miles, Patient Volunteer, Fight Bladder Cancer
Melanie Costin, Director of Patient Engagement & Support, Fight Bladder Cancer
Michael Sloane, Bookkeeping Assistant and Bladder Cancer Patient, Fight Bladder Cancer
Morna Jones, Urology Nurse Consultant
David Day, Patient Volunteer, Fight Bladder Cancer
These advocates shared their experiences and insights, providing a personal touch to the discussions.
MP Participation and Policy Asks
We had 18 confirmed MPs in attendance, with more stopping by throughout the event. Our primary goal was to secure their commitment to our policy priorities, which were highlighted in an infographic provided on the day. This document outlined critical areas needing attention and was distributed to as many attendees as possible.
Key Statistics and Awareness
Bladder cancer is not a rare disease, with nearly 20,000 people diagnosed annually in the UK. The statistics are alarming, with 16,547 cases in England, 1,691 in Scotland, 669 in Wales, and 230 in Northern Ireland. The condition affects all ages and sexes, with smoking being the biggest preventable cause. Common symptoms include blood in urine, frequent or urgent need to urinate, and recurring urinary tract infections.
Survey Findings and Patient Needs
Results from our UK patient survey revealed that:
58% were unaware that visible blood in urine is a sign of bladder cancer.
64% were misdiagnosed with other conditions before receiving a bladder cancer diagnosis.
63% reported significant delays in diagnosis, causing additional stress.
In terms of treatment:
90% did not receive information about clinical trials.
41% needed more information on treatment side effects.
Bladder cancer significantly impacts daily life:
44% experienced financial hardship due to the disease.
47% felt the long-term emotional effects of treatment were not fully addressed.
Calls to Action for MPs
We urged MPs to:
Inquire about a national bladder cancer audit to reduce regional variations in care.
Push for updated bladder cancer guidelines, which have not been revised since 2015.
Advocate for self-referral pathways to expedite diagnosis.
Standardise fast-track referral criteria across the UK.
Optimise the NHS 111 referral pathway for early detection, focusing on blood in urine.
Ensure access to genomic testing for high-risk patients.
Support the Tobacco & Vapes Bill to reduce bladder cancer risk.
Support and Resources
We provided MPs with templates, resources, and guides to assist in their advocacy efforts. Our policy team remained available for any further assistance.
Conclusion
This drop-in event provided a crucial platform for engaging MPs, sharing personal stories, and discussing vital statistics. It was an opportunity to highlight the urgent need for improved bladder cancer care and treatment in the UK. We thank everyone who joined us and made the event a resounding success. For further information and to continue supporting our cause, please contact our policy team. Together, we can make a significant impact on the lives of those affected by bladder cancer.
