Framework for Professional Practice for Nurses Working in Inflammatory Bowel Disease in Adult and Paediatric Care Settings

Julie Duncan*, Isobel Mason , Louise Barker, Kay Crook, Wladyslawa Czuber-Dochan, Aileen Fraser, Karrie Johns, Gemma Lee, Cath Stansfield, Lisa Younge

*Corresponding author for this work

Research output: Book/ReportReportpeer-review


This document provides a framework for professional practice for IBD Clinical Nurse Specialist (CNS) in clinical practice to support role development, replacing the original ‘Role Descriptives for the IBD Specialist Nurse’ document published in 2007 (RCN, 2007).
An Inflammatory Bowel Disease (IBD) CNS is a qualified nurse with specialist expertise in caring for people of all ages with IBD as a core part of a multi-disciplinary team (MDT). They are responsible for leading and managing a caseload of patients; providing diagnoses, care planning, treatment, follow up and continuity of care. The role encompasses the four pillars of advanced practice: clinical practice, leadership, facilitation of education and learning, and evidence research and development (RCN, 2018).
In some adult and paediatric settings the role of IBD CNS may be combined with other gastroenterology roles or referred to as a Gastroenterology CNS, however for the purposes of this document they will be included as an IBD CNS.
At least 500,000 people in the United Kingdom (UK) live with Crohn’s disease (CD) or ulcerative colitis (UC) and the numbers affected are rising (IBD UK, 2021; CCUK, 2022). These conditions are lifelong, relapsing and remitting, and patients are often diagnosed at a young age. Lifetime costs to the NHS associated with IBD care are comparable to diabetes or cancer.
National audits and benchmarking demonstrate that patients with IBD experience variable care quality across the UK. IBD CNSs empower patients by helping them understand their condition, supporting self-management and shared decision-making, and delivering planned and responsive, patient-centred care. Patients often describe their IBD CNS service as a lifeline (Mason, 2017). Easy access to an IBD CNS at times of relapse to support self-management is central to responsive, sustainable, quality care and good clinical outcomes. Evidence shows that without access to an IBD CNS, patients are more likely to require emergency intervention or they fall out of specialist services care (Kemp and UK IBD Audit Steering Group, 2010).
Using advanced nursing knowledge and skills, IBD CNSs can deliver services to IBD patients from diagnosis to continuing care throughout their lives. The IBD CNS is able to deliver prudent health care using virtual modalities and advice lines to promote and encourage patient-led, patient-focused care models (IBD UK, 2019; IBD UK, 2021). Other services typically provided are follow-up face-to-face and virtual clinics, rapid access clinics, timely admission, in-patient support and managing complex, high-cost drug pathways (Mason, Holbrook et al., 2012). By working with other clinicians, commissioners, and NHS leaders, IBD CNSs can also transform patient pathways, facilitating diagnosis, moving care closer to home and redesigning the service to meet patient needs.
Original languageEnglish
Place of PublicationLondon
PublisherRoyal College of Nursing
Number of pages34
Publication statusPublished - 22 Jan 2024


  • IBD Nurse
  • Advanced professional practice
  • Professional framework
  • Adult care
  • Paeditric care


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