ESPU-Nurses Meeting on Thursday 18, June 2026, 11:40 - 13:00
11:40 - 12:20
LBE-1 (LP)
Jennifer POWELL
Royal Manchester Children's Hospital, Manchester, UNITED KINGDOM
PURPOSE
Our centre has been a highly specialised, commissioned centre for children with Exstrophy-Epispadias Complex for over 20 years. The rarity of this condition poses unique challenges, both for healthcare professionals and families, and it is through extensive experience and audit, that we have developed an evidence-based MDT pathway. The role of the clinical nurse specialist is integral to service delivery, and the author would like to share this pathway on an international platform, stimulating discussion and collaborative brainstorming.
MATERIAL AND METHODS
The author reflected on the past 2 decades of service provision, with increased service demands (doubling of referrals) and changes to clinical pathways, including the introduction of prophylactic CIC for all post-op bladder closures, a transition service and implementation of virtual platforms for select aspects of service delivery. Quantitative data is limited due to the breadth of the review; however patient feedback was collected to review virtual platforms and review attendance of new service developments (e.g. joint CNS and psychology transition video appointments audited).
RESULTS
The limitations of the financial climate and resource provision are acknowledged, and this often stimulates idiosyncratic innovations e.g. digital teaching platforms to upskill ward nurses (reducing dependence on CNS), development of digital patient resources, handheld portable biofeedback machines to reinforce nurse led training and utilisation of local centres to enhance support for families. A non-attendance rate of 25% was noted for nurse led video transition clinics, emphasising the importance of access to the MDT when attending consultant led appointments, with a dedicated transition consultant.
CONCLUSIONS
Centralised service provision has enabled rapid growth of clinical experience and expertise, allowing us to make evidence-based decisions around pathway management. Our approach to Exstrophy (including delayed closure) is becoming increasingly internationally recognised, but the importance of MDT input must be simultaneously considered within service provision, to provide the best care.