The present paper gives an insight from a parent's perspective into the roles of health professionals and service providers in the daily management of a child with complex needs that include enteral feeding. It focuses on the case of a 9-year-old boy and discusses some aspects of his diagnosis and treatment, and the support received. It highlights the need for a multi-agency approach based around the child, in which parents are consulted, the opinions of professionals from the different disciplines are valued by other professionals and professionals do not issue conflicting advice but share knowledge before giving advice. There should be national accessibility to support services and a standardised training programme for carers. Better communication between parents, carers, health professionals and service providers and working together can reduce the stress for the patient and carer, and put less strain on much-needed resources.