Bladder and Bowel UK National Symposium Coventry 2024
I was recently invited to The Bladder and Bowel UK National Symposium in Coventry, to talk about Champions Charity and my lived experience of Cauda Equina syndrome. I was happy talking to a room filled with healthcare professionals, who had taken the time to attend the event in an effort to improve their knowledge and services for patients.
I have been telling my story for many years now, and sometimes think it gets a bit worn and jaded. Because of this, I have decided to change my approach and now deliver a “warts and all” perhaps, brutally honest presentation that highlights the darkness and indignity that comes from a CES diagnosis which ultimately becomes a chronic condition.
I think many years of talking to strangers on the phone about personal issues has helped me overcome any shyness about bladder, bowels and sexual function. Perhaps with a bit of mischief involved and a few laughs, I get great satisfaction from being able to create a reaction on the room.
Bladder and Bowel UK are an amazing charity based not too far from me in Manchester. They do amazing work supporting people with continence issues and helping them manage things.
Here is some feedback I will share with you to demonstrate the power of the patient voice and why it is so important for us to be heard by the medical community.
“The presentation that you delivered on “The Reality of Cauda Equina Syndrome” was well received by our delegates, with most rating it as excellent and stating that they had found it particularly interesting and helpful. Comments about your session included “great to hear patient experiences” “excellent speaker” “excellent presentation” and “lived experience from Claire Thornber was extremely powerful”.
Thank you again for your considerable contribution to a very successful and inspiring day.
– Karen Irwin, Bladder and Bowel UK Team
Without invitations to share our stories, it is much harder to raise awareness and reach those people struggling alone, unaware there is a dedicated charity and people ready to help them. If you are interested in hearing about CES Lived Experiences please get in touch with me through Cauda Equina Champions Charity.
Huge thanks to the team at Bladder and Bowel UK for helping us to reach more healthcare professionals, and ultimately our important CES patients.