Introduction In 2008 BSPGHAN guidelines for Inflammatory Bowel Disease (IBD) were published. The South-West of England paediatricians have developed a regional clinical network whereby children, suspected of having IBD travel to Bristol for full diagnostic work-up. Post diagnosis care is provided by paediatricians at the local hospital with advice from Bristol and a joint three monthly out-patient clinic in Swindon. Children with very severe disease or needing surgery are dealt with by Bristol team. Effectiveness of this model was audited and found to be improved after the introduction of BSPGHAN guidelines
Aim This pilot study aimed to assess parent and patient views regarding quality of service provided within Swindon/Bristol regional network.
Subjects and methods Thirteen children aged <16 years diagnosed with IBD between 2010–2011, managed by shared care services. A telephone questionnaire survey designed with 12 questions and a free commentssection. Questions included length of time to diagnosis, information sharing, satisfaction with services and preferences re further follow-up care.
Results 9/13(69%) responded to telephone survey, 3/13(23%) had moved out of area and 1/13(8%) could not be contacted by telephone. Of 9 patients, 4 had Crohn’s disease, 3 Ulcerative colitis and 2 Indeterminate colitis. 4/9(45%) parents felt their concerns were adequately addressed initially at Swindon whereas all parents were satisfied with services provided at Bristol for diagnostic work up. 6/9(67%) parents felt they were satisfied with the expertise available locally for post-diagnosis management. However 8/9(89%) parents were happy with follow-up care by the joint care services at Swindon.
Conclusion This single centre pilot demonstrated that joint care provided by this model not only leads to care more concordant with BSPGHAN guidelines but is appreciated and valued by parents. There is scope for further improvements. This pilot study provides a template for ensuring and improving parent/patient involvement and stisfaction; there are plans to modify the questionnaire taking into account any suggestions for improvements and roll it out over the whole SW shared care IBD network soon.