The Benign Section of the EAUN held an exciting thematic session discussing the challenges regarding teenagers in transition into adulthood. I was delighted and honoured to present the service I deliver within Guys and St Thomas NHS Trust incorporating Evelina London.
My exciting role involves managing a clinical commitment in both paediatric and adult urology; ensuring patients receive an individual, time appropriate seamless transition to adult services. I hope that my passion for addressing the practical challenges often associated with this client group was evident in the delivery of my session.
I have over 12 years’ experience as a Clinical Nurse Specialist (CNS) and four years ago initiated the Young Onset Urology (YOU) service at Guys and St Thomas NHS Trust. My unique post as the Urology CNS supporting young adults as they prepare for transition to Adult services is the first of its type in the United Kingdom. I am based in adult urology but also have a clinical commitment in paediatrics where I first meet patients, and then assist in their transition to adult services. My role also provides ongoing support to patients, their caregivers and families.
The transition of healthcare from paediatric to adult services has become ever more significant during the past 20 years as care delivery has become more complex. Advances in paediatric medical and surgical options have increased life expectancy for this client group. As a result, roles have developed to proactively manage this transition period and facilitate the transfer of care from paediatric to adult services. There is also recognition that encouraging the development of patients’ independence and involving them in their treatment options and decision-making are vital components in maintaining treatment compliance and providing ongoing support.
The session opened with clear outline of the aims and objectives for discussion. It allowed time to introduce the Young Onset Urology client group consisting of patients with childhood complex urological conditions, including patients with congenital conditions such as bladder extrophy, cloacal anomalies, spina bifida, posterior urethral valves, hypospadias, and patients with neurogenic bladders. A number of these children have had reconstructive surgery in childhood. They are at risk of bladder dysfunction, metabolic disorders, neoplastic changes and potential deterioration in their renal function. It is therefore imperative that these young people require ongoing care as they move on from children services. My aim was to define and acknowledge the client group and demonstrate the importance of maintaining good health and preventing deterioration in renal function, all of which was positively received by the audience.
The challenges often associated with this client group and their families were discussed and the positive benefits of the CNS role, providing clinical expertise in both paediatrics and adult services were clearly demonstrated. The early identification of transition patients, relationship forming, confidence and trust building are considered as key to maintaining patient engagement and compliance with treatments and follow-up and continuing client and family engagement.
The session generated lively discussion with exceptional interaction from audience and panel members, demonstrating the positive benefits of a key worker to support young adults during the time of transition into adulthood. I provided evidencesupporting transitions as a multi-dimensional and multidisciplinary approach with consideration to health, psycho-social, educational and vocational needs. The need for individualised seamless transition was highlighted.
I have built and developed my service with user involvement and demonstrated this with results of surveys and discussed about how this data was used in the development of patient information and in benchmarking and shaping the service. I also discussed the need to formalise and develop a transition pathway. The audience reacted positively and I was delighted to encourage them to develop similar pathways. The audience were curious to know how discussions are facilitated between adult and paediatric teams. There was open conversation on the role of the multi-disciplinary team meetings in identifying patients requiring transition which facilitated a forum to discuss conditions and previous treatments received by patients.
Questions about the age at which patients are transitioned were asked. Several opinions and debate followed. It was agreed that transition should be viewed as a process not a single event and that early identification of patients requiring transition was of paramount importance. I explained the benefit of being reviewed in paediatric services prior to transition, from patient and caregiver’s point of view, and describe the reassurance offered to patients as a result of this review.
I have previously presented the YOU service at the European Society of Paediatric Urology, (ESPU) incorporating ICCS, raising awareness of this client group and highlighting the importance of providing ongoing support as they enter adult life.
Author: Winifred Nugent, Young Onset Urology CNS, Urology Centre, Guy’s Hospital, London (UK), winifred.nugent@