End of Year Review: Crohn’s & Colitis Raising Awareness of Crohn’s and Colitis This year has been an exceptionally busy year for Crohn’s & Colitis Ireland! It has been filled with a lot of very exciting projects and initatives, and some of the highlights are outlined below.
Written by Amy Kelly Head of Communications and Fundraising
Crohn’s & Colitis Ireland launched a new campaign as part of World IBD Day called the “Poo Taboo” which aims to encourage people to recognise Crohn’s Disease and Ulcerative Colitis symptoms, and not be embarrassed to get checked out. The campaign featured a symptom checker were in just 30 seconds the respondent would know what to do, including whether to contact their GP and what symptoms to highlight during the appointment. Within the first 3 months of the symptom checker the response rate had exceeded the initial target with 12,999 responses. 96% of respondents, 12,444, were told to speak with their GP in the next few days as they were experiencing IBD symptoms. From the campaign IBD was mentioned in over 90 various media outlets in May 2023, including national radio, tv, and print, digital, podcasts and local radio and print. This campaign was supported by AbbVie and Pfizer.
• Financial burden on IBD patients
The final session of the day is a panel discussion that look at how patients can have more frank and open conversations with their doctors and look for a more sustained long-term treatment for their disease.
• Childhood, adolescent, and transitional to adulthood care
Speakers from our Cork Patient Day included:
• Recruitment of further support including psychologists and Dietitians
• Prof. Subrata Ghosh - Chair and Head of Medicine at UCC and Deputy Director of the AP.
“CCI Connect” Support Groups
• Kathleen Sugrue - Advanced Practice Provider in IBD, The Mercy
Raising Awareness in Dáil Éireann
We travelled around country from Dublin to Cork, Galway and will be in Letterkenny in November with our patient days. These days feature information sessions provided by the IBD team on topics such as flare management, how to get most from your appointments, explaining IBD and more.
Launch of CCI’s “Poo Taboo” Campaign
Thursday the 25th of May, Crohn's & Colitis Ireland presented to TD's and Senators in Leinster House in Dublin on what it is like to live with IBD in Ireland and the support we need to live well. Speaking on the panel was: • Prof. Colm O’Morain HSE/ RCPI Clinical Lead in Gastroenterology & Hepatology. Emeritus Professor of Medicine, Trinity College Dublin. Gastroenterologist, Tallaght University Hospital,
• Access to diagnostic testing and new treatments • Long-term Illness Scheme recognise IBD as a lifelong illness
Going through a diagnosis of Crohn's or Colitis can often be a difficult journey. Although friends and family can be hugely supportive and do their best, there is nothing like chatting with someone else who lives with the condition. This year we launched "CCI Connect", an online members-only support group. The online support group meet every two months and is an informal space, giving an opportunity to connect with other people living with Crohn's & Colitis in Ireland from the comfort of their own home. CCI Patient Days
The day also feature a networking lunch, where participants have the opportunity to meet others who live with IBD.
• Aideen Stack - Health Psychologist and IBD patient • Aoife Walsh - Former Miss Ireland and IBD patient • Angela Mullen - Crohn’s and Colitis Nurse Specialist, Cork University Hospital • Clodagh Byron - Clinical nurse Specialist Inflammatory Bowel Disease, Cork University Hospital Speakers from our Galway Patient Day included: • Áine Keogh, Advanced Nurse Practitioner in IBD, Galway University Hospital • Dr. Richéal Burns, Lecturer in Health Information Technology, Department of Health and Nutritional Science in ATU Sligo • Jonathan Healy –Lives with Crohn’s Disease and with a stoma Croke Park Abseil On the 19th of August, braves heros from around the country took on the challenge of abseiling
• Mary Hamzawi, Clinical Nurse Specialist, St. Vincent’s Hospital & Crumlin Hospital, • Victoria Spillane, CCI Board member and IBD patient • Amy Kelly, Head of Communications and IBD patient, CCI. The team highlighted the problems that people with IBD in Ireland face including: • Route to diagnosis and A&E admission DECEMBER - PROFESSIONAL 100 ISSUE - 2023 • HPN | HOSPITALPROFESSIONALNEWS.IE
from the top of Croke Park raising funds for CCI. We had 65 people take part who raised over ¤65,000! It was a fantastic day out that seen patients, IBD teams and other supporting partners join together and have some fun the process. Launch of “Me and IBD” Colouring Journals children and teens In November 2023, we will be launching our new “Me and IBD” Colouring Journals for 7 – 14 year olds. When diagnosed with a chronic illness such as Crohn's disease or Ulcerative Colitis, it can be an overwhelming time to take in all the relevant information especially as a young person. Our journals aim to help empower young people to become complete experts in their illness, understand all aspects of how it may impact their life, understand the terminology, learn about how their digestive system works, and help to remove fear and embarrassment around IBD. We have partnered with Crumlin Hospital on this initiative and will be providing some copies complimentary to their patients along with providing the journals in our under 18’s membership packs. Looking to 2024 As we look to 2024, we are celebrating out 40th Anniversary and currently putting plans together to mark the occasion. Some projects and initiatives we hope to launch include a clinical referral pathway to support newly diagnosis patients, and IBD Cook book, launch local networks, host webinars in a range of topics and more.
