London. The centre of bowel related things
I love going to London, the capital of my country. I never get bored of going, there is always something new to discover; no two trips are the same. It’s expanse, it’s network of tubes and trains, it’s hustle and bustle; it calls to me. I am a Brummie girl after all.
A couple of weeks ago I had a public engagement in the City. I got to attend a small fundraiser and research presentation on behalf of the Bowel Disease Research Foundation. They are advancing the cure and treatment of bowel disease, which is a mammoth task. I am proud to be affiliated with them, as they gave me the opportunity to express my views on how important patient participation is for their research funding of specialist projects. I worked on the PPI day for the upcoming ROMantic Trial of which I am very passionate about. You can read more about that day here.
— The Bottom Line (IBD) (@bottomlineibd) May 17, 2017
They are based in the Royal College of Surgeons of England in Holborn. This event took place in The Hunterian Museum; a place of pride and excellence in the long and esteemed history of the RCS. I spoke – hopefully passionately and eloquently – about my belief that patients are the unheard voices of medical progress. That we – as a section of the community – would be sorely missed if researchers and developers of new techniques did not include us in their curiosity. For most who attended; patients are what continue to drive them forwards in their respected fields. Bowel disease is something that does not just affect one generation or a particular age cohort; it affects is all – either directly or indirectly. It is a slow and sometimes silent killer because of the shame that talking about bowels and poo has in our society. The projects displayed that night are helping develop new branches of medicine that can improve Quality of Life and the patient experience of bowel disease. Highly celebrated steps forward.
You can read the BDRF news item of the event here:
A few days after that, I took another trip into the City. This time, for the St Mark’s 6th Annual IBD Day.
— St Marks IBD Patient (@StM_IBDpatient) May 3, 2017
Not only was there the opportunity to walk around an inflatable colon, but there were some wonderful talks on IBD topics: including medical management, surgery for IBD, the care of the Red Team at St Marks, IBD nurses and mental health. I took many notes, met some great people and learnt so much. My notes and the slides from the talks are available online soon – link to follow!
I also got to meet up with one of my favourite ostomy people – Shell Lawes of Stoma in a Teacup. Her ambitious drive, her supportive nature and detailed knowledge of so many aspects of IBD and ostomy life is drawn from not only her experience but her passion for supporting others but learning. She is one tough lady and has a wonderful family behind her. She is a credit to the IBD and Ostomy community, especially online; where we first met. It had been a long time coming but it was a pleasure.
My close proximity to London these days is going to be used to it’s full advantage. I hope to get more involved with the wonderful work that the BDRF do every day and days at St Mark’s are wonderful at reassuring me that developments in IBD care are continuing whilst I live my life in a good period of remission.