The National ACPGBI – IA Pouch Surgery Resource and Education Programme will create the first national “Good Pouch Pathway” for people having ileoanal pouch surgery, alongside clear patient information and new training for healthcare professionals.
At a glance
- Funder: IA Research Award
- Award: £30,000
- Duration: 24 months, January 2027 to December 2028
- Lead: Mr Valerio Celentano, Chelsea and Westminster Hospital NHS Foundation Trust
- IA representative: Emma Greenwood, Stoma and Pouch Care Specialist Nurse
- Collaborator: Association of Coloproctology of Great Britain and Ireland (ACPGBI)
Why this research matters
An ileoanal pouch, also called a J-pouch, is an internal reservoir made from the small intestine after the large bowel has been removed. It allows people to go to the toilet in the usual way without a permanent stoma.
The information and care people receive before and after pouch surgery can differ depending on where they are treated. There is currently no national agreement on what good pouch care looks like, from referral through to long-term follow-up.
What the study will do
The project will bring patients, carers and healthcare professionals together across the UK and Ireland. It will:
- review the patient information currently used by hospitals and co-produce clear, consistent resources with patients
- agree a national “Good Pouch Pathway” covering referral, deciding on surgery, preparing for and recovering from surgery, complications and long-term follow-up
- develop webinars, case discussions and training materials for healthcare professionals, and plan a future virtual pouch fellowship
Everything the project produces will be free to access, and patient resources will be written in plain language with accessibility in mind. The aim is to reduce variation in care, support shared decision-making and improve outcomes for people living with a pouch.
Taking part
The project will be looking for people living with a pouch, people considering pouch surgery, and their families and carers. Opportunities will include focus groups, workshops, surveys and a consensus study to help shape the Good Pouch Pathway.
No medical knowledge is needed, just your own experience. We will share details on this page and across our channels as opportunities open.
The study team
Valerio Celentano is a Consultant Colorectal Surgeon at Chelsea and Westminster Hospital NHS Foundation Trust, where he leads the Inflammatory Bowel Disease and Ileoanal Pouch Surgery Centre. He is an Honorary Senior Lecturer at Imperial College London and Chair of the ACPGBI IBD Committee. His awards include the BSG Service Award, the National Excellence Award and the ACPGBI Trainer of the Year Award.
Emma Greenwood is IA’s Stoma and Pouch Care Specialist Nurse and joins the core team as IA’s designated representative.
They are joined by a steering group of patient representatives and colleagues from Chelsea and Westminster’s multidisciplinary team and Imperial College London:
- Caroline Bramwell, Patient Representative
- Professor Amanda Cross, Professor of Epidemiology, Imperial College London
- Dr Ibrahim Al-Bakir, Consultant Gastroenterologist, Chelsea and Westminster Hospital NHS Foundation Trust
- Esmeralda Hasaj, Pouch Surgery Clinical Nurse Specialist, Chelsea and Westminster Hospital NHS Foundation Trust
- Melanie Jerome, Stoma Care Lead, Chelsea and Westminster Hospital NHS Foundation Trust
Patients at the heart of the study
Patients will be equal partners throughout, from designing surveys and setting priorities to co-writing resources, taking part in the consensus study and sharing the findings.
Valerio said: “I believe patients should be at the heart of improving healthcare. In pouch surgery, that means listening to patients, involving them in shaping their care and measuring the outcomes that matter most to them.”