• September sun

    It feels like the summer has rushed by without a decent fortnight of the sun in the UK, hopefully we will have some this month (hence the optimistic title of this blog!) At CICRA, we have been busy preparing lots of projects, and here are a few highlights.

    Last weekend, CICRA went to Glasgow for Crohn’s and Colitis UK’s day at Hampden Park. Whilst in Glasgow, I also got to meet with our medical director, Dr Richard Hansen, and members of the team at Glasgow Children’s Hospital. Although the pressures never stop, the positive and friendly attitude across the staff team was impressive, and my visit reinforced to me the crucial role of healthcare professionals in managing the complexity of inflammatory bowel disease.

    Whilst there, I also had the pleasure of meeting Derek McEwan from the Catherine McEwan Foundation and an impressive young supporter, Kier Greenwood, who donated a signed Scotland team football shirt for their next auction.

    In just over four weeks, we will be holding our Birmingham Family Day, our third this year. We are delighted to have many speakers from Birmingham Children’s Hospital as well as specialists in Very Early Onset IBD. Popular sessions on medical topics will feature alongside fun activities for children, discussion groups for young people and an opportunity for them and their families to meet others in similar situations. Feedback on our family days is very positive so if you haven’t been to one before, please do come along if you can.

    As a small charity, it’s important we work with others to make the most of a united voice on important issues and I am attending meetings to discuss the availability and accessibility of public toilets and Can’t Wait cards. Whether it is supposed politeness or just reticence to discuss natural bodily functions, far too many lives are disrupted and damaged by the lack of public toilets and public understanding of toilet needs. Your thoughts are always welcome: nickposford@cicra.org

    In case you missed it, as part of preparing for our 40th anniversary in 2018, we are running a survey that will help us develop our strategy, with a focus on what is most important for children and young adults with crohns and colitis. We know that many children and families don’t always find us when they are seeking support, so we are reviewing how we can improve our communications and make our support and information easier to find. Getting help quickly and when it is most needed is really important, we want to do the best we can to make that happen. There are lots we want to do, including big improvements to our website, more activity on social media and better communication with clinics and hospitals. Most important in all of this are the experiences of children and young adults with crohns and colitis, their families and healthcare professionals and researchers.

    As always, we are forever inspired by young people and our recent Insider newsletter highlights three young women who have managed to get to degree level studies despite battling IBD throughout their childhood. Georgie Lack is one such special person and she is running in the Windsor Half-Marathon and has already raised over £1200. You can read her story in The Insider and do think about sponsoring her run as the event is only ten days away. You can also suggest a song for her running playlist! If you would like to take part in an event yourself, please let us know. Everything we do is only possible thanks to the most amazing supporters, so we are hugely grateful to all who fundraise or donate, to help children and young adults with crohns and colitis. You make the difference!

    You can see my recent blogs for Huffington Post UK and IBDrelief and you can always follow me on Twitter @nickposford