The Importance of the Specialist Nurse Role as Part of the Lifelong Care of Congenital Conditions

Abstract

Young Onset Urology (YOU) describes patients with childhood long-term, complex urological conditions. This may include patients with congenital conditions such as bladder exstrophy, cloacal anomalies, spina bifida, posterior urethral valves, hypospadias, patients with neurogenic bladders, and some who have had reconstructive surgery, and are at risk of urinary infection, stones, bladder dysfunction, metabolic disorders, neoplastic changes and potential deterioration in their renal function. These young people with long-term complex conditions require ongoing care as they move on from children services. During this time, it is recommended that their continued care should be delivered by a specialist team with specific knowledge about their conditions and previous treatments with adequate skills to provide lifelong care. Careful consideration must be given to the most appropriate place for their long-term care, and who will support them and their families during and after this period. This chapter describes the clinical nurse specialist (CNS) role within such care, illustrates the introduction and use of a transition pathway, and demonstrates how the role of the CNS provides support to this group of patients. This includes education, management, accountability and peer support for the CNS. The clinical care pathway will be outlined, with reference to the identified age of transition, its implication for care and treatment options.