Establishing a disability‐specific home enteral nutrition service in a paediatric tertiary hospital: Experience and outcomes

Abstract Aims The provision of Home Enteral Nutrition (HEN) is a well‐established support for patients, however, significant inconsistencies in funding result in financial burden for some healthcare services across Australia. Recent government‐initiated funding changes prompted the development of a new HEN service for eligible patients with a disability, moving from a universal to more individualised approach to care. Methods This retrospective observational study included patients enrolled on a newly established disability‐specific HEN service at a paediatric tertiary hospital between July 2020 and February 2022 inclusive. Components of service development were explored including service model, clinical resources, information related to patient enrolments and costings for annual HEN requirements provided by dietitians. Retrospective quantitative data was collected from the Electronic Medical Record system and analysed using descriptive statistics. Results A total of 362 patient enrolments occurred over a 21‐month period, with an average of 17 new patients having accessed the service each month. Annual HEN supports were quoted at a median cost of $13487.94 AUD (2364.97–44170.92), mostly attributable to consumable requirements. Most eligible participants chose to receive care through the new HEN service. Supports were quoted >330% higher than previous fixed price allocations, highlighting the true cost associated with HEN care. Large variation in costings may be attributed to the diversity and complexity of patients. Conclusion Funding changes presented a unique opportunity to meet pre‐existing resource deficits and enabled individualised access to HEN supports for paediatric patients with a disability.