Around 120 children, young people and their parents came to the Novotel Hotel in Leeds on Saturday 22nd September to join CICRA Trustees, CICRA volunteers and members of the medical profession for the first CICRA Family Day to be held in Yorkshire.
We would like to thank Dr John Puntis, Dr Jonathan Sutcliffe, IBD Nurse Tanya Clarke and all members of the paediatric gastroenterology team, and those from outlying hospitals in the area caring for young people with IBD, for helping to make this such a good day. Their talks in the morning were very encouraging and informative. We would also like to thank our special guest speaker Professor Tom MacDonald, Dean for Research at the Barts & Royal London Hospital for joining us and giving news of current research in both the UK and overseas. He also spoke of his hopes of new treatments being available in the future for this complex condition and was joined in the afternoon session by Dr Marika Kullberg, a past funded CICRA researcher.
During the morning two young people, Harleen Ghuman and Alice Pickering spoke very movingly of their experiences of living with inflammatory bowel disease, Harleen with UC and Alice with Crohns. They both spoke of the effect it had on them but also their determination that they would not give up despite these really bad experiences. It was pleasing to hear that Alice is going into the medical profession and Harleen is hoping to study the sciences at University when she completes her ‘A’ levels. We thank them most sincerely for their contribution enabling other youngsters with IBD to see that there is ‘light at the end of the tunnel’ and that they too may be able to follow their dreams.
Andrew Engel followed Harleen and Alice by providing a parent’s perspective about living with IBD and spoke about his son Tom’s illness and how it had affected them as a family.
Following a buffet lunch, which gave time to ‘chat’ with others, CICRA Trustee, Dr Deborah O’Neil, opened the afternoon session by giving a short presentation on CICRA’s role in helping to support families affected by IBD. Also CICRA’s funding of research and training schemes for young qualified doctors and scientists to specialise in IBD.
Small group sessions followed, each group headed up by two medical professionals ready to answers any questions that the parents had. Each session lasted approx. 20 -25 minutes giving parents time to rotate between their chosen sessions which covered Living and Coping with IBD, Diet and Nutrition, Research, Clinical & Treatment and Surgery & Stoma Care.
While parents were busy in the sessions the younger children were entertained by Becky, a balloon modeller with extraordinary skills who managed to produce whatever the children asked for from a monkey up a tree to animals and television favourites. Meanwhile, over 20 teenagers had their own meeting facilitated by Trustee Dr Deborah O’Neil and IBD Nurse Tanya Clarke – a parent free time getting to know one another and swopping their experiences of living with IBD and other interests that they have.
We hope that the families attending felt that they had benefitted from the day and our thanks to all the medical professionals already mentioned and Dr Sally Pollard, Dr Veena Zamvar, Dr Himadri Chakraborty, Julie Steele, Angela Freeman, and Cheryl Thomas for giving up their Saturday to help CICRA provide a better understanding of the condition and support to families of children and young people with IBD.