ERN RARE-LIVER Clinical Exchange Programme: Reports from London
“As part of the ERN RARE-LIVER Clinical Exchange Programme, I undertook a two-week clinical observership at the Paediatric Hepatology and Transition Services of King’s College Hospital in London, with the aim of gaining insight into established models of transitional care for adolescents and young adults with rare liver diseases.
As a clinical transition nurse specialist working at La Paz University in Madrid, my primary interest was to observe how transition is structured as a longitudinal and multidisciplinary process rather than a single point of transfer, and to explore practices that could be adapted to my own clinical setting. During my stay, I had the opportunity to attend and observe a wide range of outpatient clinics, including paediatric clinics, pre-transition clinics, transition clinics and young adult clinics, which allowed me to understand how care is progressively adapted according to developmental stage, autonomy and psychosocial needs. I closely followed the work of the multidisciplinary team, including transition nurses, paediatric and adult hepatologists, clinical psychologists and social workers, and participated in multidisciplinary meetings where individual patient pathways and transition planning were discussed in a holistic manner. Particular emphasis was placed on supporting adherence, emotional wellbeing and self-management skills, highlighting the essential role of psychological and social support within transition care. In addition to clinical activities, I attended teaching sessions and internal educational meetings focused on adolescent health, communication strategies and transition models, which reinforced the importance of professional training in this field.
Overall, this exchange provided a comprehensive overview of a well-established transition programme within a tertiary hepatology centre and had a significant impact on my professional development, offering practical and transferable examples of nursing-led coordination, multidisciplinary collaboration and holistic transition care that I aim to adapt and implement in my home institution, while also strengthening professional links within the ERN RARE-LIVER network. I would like to express my sincere gratitude to Marianne Samyn for her leadership, mentorship and generosity in sharing her expertise, as well as to the entire paediatric hepatology and transition team for their warm welcome and support throughout this exchange.”
Paloma Martínez Campos, Hospital La Paz, Madrid
To learn more about the ERN Clinical exchange programme, please visit the dedicated section on our website or contact the ERN RARE-LIVER office directly.