Table 1.

Thematic feedback from healthcare professionals and patients regarding use of previous IBD Standards and areas for inclusion for 2019 IBD Standards

Healthcare professional survey (n=151)	Patient survey (n=689)
Practical examples of use of IBD Standards in clinical practice Funding and business cases for staff (IBD nurse specialists, dietitian, psychologist, administrator, improved bed:toilet ratio). Funding and protected time to use UK IBD Registry. Support for service improvement (establishment of multidisciplinary team, rapid biologics initiation, joint gastroenterology/surgical clinic, fast track for perianal Crohn surgery). Increased patient support (patient advice line, patient panel, annual patient open day).	Suggestions for inclusion in 2019 IBD Standards Guidance on appropriate and accessible information, communication and support for patients at all points to improve understanding and self-management, enhance a sense of personal control/empowerment and alleviate the isolation many feel. Mental health referral pathways/training to give emotional support and regular mental health assessments from diagnosis. An emphasis on holistic treatment and care, including wider symptoms such as pain and fatigue, joint and skin conditions. Focus on what constitutes effective shared and coordinated care, including between different specialists, primary and secondary care and accident and emergency and the IBD team. Strengthen sections outlining opportunities for patient and carer involvement in improving IBD services. Clear recommendations on time frames for diagnosis, access to advice, investigations, medication and surgery. A personalised care plan for every person with IBD that they jointly develop and have access to, which includes mental health, dietetic support, lifestyle advice, medication reviews, regular monitoring and alternatives to medicines. Greater emphasis on preventing flares, including education on identifying signs and development of individual plans around prevention. Guidance on what shared decision-making should look like, particularly in relation to medications.
Suggestions for 2019 IBD Standards Strengthened focus on the role of primary care to enable more seamless care. Increased detail relating to surgery. Greater clarity around delivery of biologics services. More specific requirements for the level of dietetic service that should be provided. Improved emphasis on paediatric and adolescent IBD. Increased focus on involvement of service users. Expanded methods to help patients stay well and to prevent flares as far as possible. More accessible, user-friendly and patient journey orientated. Resources to support service development, including business case templates and patient stories, benchmarking toolkit and links to clinical guidance. Importance of outcomes (including quality of life) and quality metrics, linkages with IBD Registry and RCP QI programme.

IBD, inflammatory bowel disease; QI, quality improvement; RCP, Royal College of Physicians.