On Saturday 28 September, Birmingham hosted what has gone down in the record books as our biggest and best ever Patient Education Day. Although we had been close to Birmingham before, we had not actually visited England’s second largest city and our choice was vindicated by a tremendous turnout.
So much so that we were fortunate that our chosen venue, Austin Court, was able to switch us into their state-of-the-art lecture theatre to accommodate the extra numbers for a range of interesting talks. The large and open-plan Waterside Room, overlooking the city centre’s bustling canal network, provided ample space for our delegates to enjoy breaks and lunch whilst chatting to our sponsors and exhibitors about their latest offerings, and there were quieter spaces where people could meet and mingle.
It was particularly exciting to see so many families attending. So many people on sign up had mentioned “want to meet others like me” as a reason for attending, and never is this more heartfelt than with children. Kids have it tough these days, growing up in the glare of social media and the pressure to conform to social stereotypes.
Having a Mitrofanoff is not easy for anyone, but the stigma of being different must be acutely felt in the younger age groups. However, the day provided the opportunity to focus on the positives that the procedure brings.
Following on from London, where we had a couple travelling all the way from America to attend, Birmingham boasted no less than three families who had flown in from Ireland. I would like to thank all who attended for contributing to what was a memorable day.
As a rare procedure, it is easy for Mitrofanoff patients to feel isolated and alone, but the day proved again that the charity operates as one large and inclusive family, and embodied more than any other event our key message: “Together we will never be alone”.
The day started with the accomplished double act of Renee Holmes, our Chairperson, and Dan Wood, our Patron. I can remember feeling apprehensive when I attended the Bristol event in 2015, but Renee and Dan have a knack of putting everyone at ease with their engaging warmth and humour.
The next session picked up on the theme of Transition, a topic at the forefront of the efforts of medical charities recently as we strive to ensure the best standard of support on the journey through the age spectrum. This of course is particularly relevant to Mitrofanoff Support given the many and varied ‘Routes to Mitro’, and therefore spread of ages, within our community.
We heard four personal and beautifully constructed stories across this spectrum, started by Lulu Thatcher who gave an honest account of growing up and being a teenager with a Mitrofanoff, followed by her father John whose thoughts resonated with many parents in the audience. David Rose gave an insight as somebody who has transitioned from child to adult care, with tips on how to manage school, university and working life. The session was rounded off by Susan Tomblin, who many of you will know as a stalwart of Patient Education Days across the country, who explored the perspective of somebody coming to Mitrofanoff in later life.
In the afternoon our Adult Nurse Advisor, Sharon Fillingham, continued the theme with an engaging talk on the topic of Change, with many of those ideas being continued into the Breakout sessions that rounded off the day. Thank you to all our speakers, some of whom I know were very nervous, perhaps understandably given the staging in front of such a large audience!
The comment that follows from one pre-op patient shows just how worthwhile events like this are:
“I really enjoyed Saturday, thank you! I learnt so much, feel not so lost, and understand the Mitrofanoff better. Everyone was so welcoming and lovely. I cried on my way home because it genuinely felt amazing to feel part of something rather than the dreadful feeling of loneliness.”