N021 Patients’ experience of the Irish Society for Colitis and Crohn’s Disease
M. Forry*1, B. Lucas2, M. Hamzawi3, C. Davis2, F. Troy2, V. Power2, P. McArdle2
1Beaumont Hospital, Gastroenterology, Dublin, Ireland, 2Irish Society for Colitis and Crohn’s Disease, Dublin, Ireland, 3Our Lady’s Children’s Hospital Crumlin, Gastroenterology, Dublin, Ireland
The Irish Society for Colitis and Crohn’s Disease (ISCC) was set up in 1984 to support people living with inflammatory bowel disease (IBD).
This survey aimed to gather patients’ experience of the ISCC and to ascertain if patients use the ISCC as a source of information about IBD.
Questionnaires were distributed to ISCC members and non-members. They were also distributed to outpatient clinics and to Infusion Suites.
In total, 200 questionnaires were analysed (from 100 males and 100 females) with 48% of respondents over age 45. Only 32 % of respondents were ISCC members, with 71% of non-members saying they would consider joining. When questioned about where they got information regarding IBD, 42% got information from their gastroenterologist; 25% from their nurse; 12% from a general practitioner; 12% from the ISCC; 2% from their pharmacist; and 7% from other sources. Though an overwhelming majority (95%) of people feel they get value from their ISCC membership, those affected by the condition want more. Suggestions to improve the service from the ISCC included organising additional services such as social and sport events, as well as more regular newsletters. Participants in this survey also wished to be kept up to date with research and clinical trials. Only 27% of respondents had attended an ISCC event, with 75% of those who have not attended an event saying they would do so in the future. The ISCC relies heavily on volunteers, and 18% of respondents were willing to give some time to the ISCC.
Further, 12% of respondents use the ISCC as a source of IBD information. There is a need for the ISCC to become more visible. Encouraged by the enthusiasm for volunteering, a volunteer recruitment event is being organised with a view to promoting the ISCC across all media and devising a social media strategy. The ISCC website is also being updated. Interestingly, only 12% of respondents use their GP as a resource, so it would seem ISCC has a significant role to play in informing people about living with IBD and providing a network of support. Health care professionals, too, have a role to play in the promotion of the ISCC as a peer-support organisation.