Inflammatory bowel disease (IBD) can present at any age and is increasingly prevalent amongst children and adolescents (Vuijk et al., 2024). Regardless of age, people living with IBD require access to specialist care, including support from an IBD clinical nurse specialist (CNS).- IBD UK (2024).

Published in January 2024, the Framework for Professional Practice for Nurses Working in Inflammatory Bowel Disease in Adult and Paediatric Care Settings has provided IBD CNS with practice and professional development guidance: Nurses working in IBD.

The Framework acknowledges that IBD CNS have differing levels of experience, expertise, practise and localised role requirements. It aims to clarify roles across the four pillars of nursing at different levels of practice (enhanced, advanced and consultant) as defined by HEE (2017).

Its key aims are to:

• Support development of IBD nursing roles
• Reduce variability of patient care
• Guide IBD CNS career progression
• provide a benchmarking tool for all IBD CNS roles
• define knowledge and skills across the four pillars of advanced practice.

For the first time, both adult and paediatric nursing was included in the framework acknowledging the key similarities, and differences, in how care is delivered in adult and paediatric settings. Although some aspects of paediatric and adult IBD care follow similar treatment pathways, children and young people present distinct clinical, developmental, and social needs that require a tailored nursing approach.

Paediatric IBD care places particular emphasis on growth, pubertal development, emotional wellbeing, and nutritional status. Medication dosing requires regular review and adjustment to reflect changes in weight and growth. Disease assessment may also differ from adult practice, with paediatric-specific disease activity scores used to monitor disease activity Green et al (2024). In addition, further investigations, such as endoscopy, usually require general anaesthetic in paediatric patients. Alongside clinical assessment, nurses must consider the wider social context, including family support, education, school attendance, and the impact of IBD on daily life.

Nursing support for children and young people with IBD should, therefore, be aligned with these clinical, developmental, and psychosocial needs. However, education specifically aimed at paediatric IBD nurses is limited. This may restrict career development opportunities for clinical nurse specialists working in this area.

The paediatric IBD CNS may also work within a broader role that covers multiple specialties rather than IBD alone. This variation in role scope can contribute to differences in banding, responsibilities, and expectations across services. To address these challenges a cohort of IBD CNS from the paediatric RCN IBD Network developed a competency framework distinct but linked to the Professional Practice Framework. Aligned with the four pillars of nursing it aims to formalise training, career and role development, and support standardisation within paediatric IBD nursing practice: Paediatric bowel disease.

If you work in IBD care we would encourage you to download these documents, benchmark your current practice and use the Frameworks to drive your professional development and advance your specialist practice.

References

• NHS England (2025). Multi-professional framework for advanced practice.
• IBD UK (2024). The State of IBD Care in the UK 
• Green Z., Ashton J. and Beattie M. (2024). Paediatric inflammatory bowel disease: an update on current practice. Paediatrics and Child Health. 34 (10). 379-387.
• Frontline gastroenterology OC26 educationing paediaatirc inflammatory bowel disease specialists:are we doing enough?
• Vuijk S., Camman A. and Ridder, L. (2024). Considerations in paediatric and adolescent inflammatory bowel disease. Journal of Crohn’s and Colitis. 18 31-45.