Nursing Times - Children with medical complexity: challenges and the need for change

A note from our Chief Executive, Louise Griew

Our charity exists to provide specialist nursing care for children with complex, lifelong conditions. We deliver this care through a growing network of highly trained Roald Dahl Nurses. We want to make sure every seriously ill child has the support of a Roald Dahl Nurse and we strive to bring systemic changes that will better support Children with Medical Complexity and their families.  So, we are thrilled two of our Roald Dahl Nurse Specialists have been able to share research, expertise and experience in a three part series with The Nursing Times. The first article takes an in-depth look at the growing numbers of Children with Medical Complexity and discusses how more coordinated care - like the unique care delivered by our Roald Dahl Nurses - can help ensure families are better supported. The article announces the new work, spearheaded by Roald Dahl's Marvellous Children's Charity in consultation with Costello Medical, which brought together clinical experts to create a unified definition of Children with Medical Complexity and the creation of a unique SNOMED CT Code (Systematised Nomenclature of Medicine - Clinical Terms) to help hospital teams identify and better support Children with Medical Complexity. Coordination of Care The article also highlights the real benefits of improved coordination of care – a core part of the Roald Dahl Nurse remit. Published in 2021, Sheffield Hallam University’s independent evaluation of the role, impact and contribution of Roald Dahl Nurses has demonstrated improvements, including reductions in consultant appointments, A&E attendance, urgent GP visits and hospital admissions (Nightingale et al, 2021).  Read this research in full here. We are currently conducting further research to evaluate the impact of Roald Dahl Children with Medical Complexity Nurse Specialists, with reports due early 2027.  Roald Dahl’s Marvellous Children’s Charity fundraises to establish Roald Dahl Nurses in NHS Hospitals across the UK to ensure children and families receive this vital support.  Please visit our website for more information on how you can support our work.

Picture courtesy: Cheshire Life