IBD patient panels: a personal reflection on three stages of development of an IBD Patient Involvement Project initiated and supported by Crohns and Colitis UK

摘要

Crohn's and Colitis UK (formerly The National Association for Colitis and Crohn's Disease) first established a pilot of six inflammatory bowel disease (IBD) patient panels in 2005. There are now 20. Crohn's and Colitis UK offers a framework within which panels can function although there is built in flexibility to suit local circumstances. Patient panels are most effective when they work in partnership with their local NHS professionals. Their uniqueness in the patient and public involvement field lies in their being a disease specific patient group with a focus on their own local IBD services. Panel members are able to speak with the authority of personal experience and with the benefit of assimilated knowledge. A patient panel influences patient care by: (1) providing feedback on current service provision; (2) being a sounding board for departmental developments; (3) initiating suggestions for future developments; and (4) giving support to proposals for departmental developments (perhaps by using the IBD Standards as a benchmark). Most IBD patient panels are self supporting. Some receive assistance from their IBD department. Nationally, Crohn's and Colitis UK provides support through their patient involvement adviser and a patient panel page on their website. Some training and networking is also offered. From the appointment of IBD nurses to changing the way local services are delivered, they have been instrumental in bringing about improvements to IBD services across the country.