A new model of paediatric nursing, funded initially by a charitable organisation working in partnership with UK healthcare providers, was implemented to support children living with serious long-term conditions. This study explored, from the perspective of multiple stakeholders, the impact of services provided by 21 ‘Roald Dahl Specialist Nurses’ (RDSN) within 14 NHS Trust hospitals.

A Mixed Methods Exploratory design commenced with interviews with RDSNs (n = 21) and their managers (n = 15), alongside a medical clinician questionnaire (n = 17). Initial themes (constructivist grounded theory) were validated through four RDSN focus groups, and informed development of an online survey of parents (n = 159) and children (n = 32). Findings related to impact were integrated using a six-step triangulation protocol.

Zones of significant impact included: Improving quality and experience of care; Improved efficiencies and cost-effectiveness; Provision of holistic family-centred care; and Impactful leadership and innovation. The RDSNs forged networks across inter-agency boundaries to safeguard the child and enhance the family experience of care. RDSNs delivered improvements across a range of metrics, and were valued for their emotional support, care navigation and advocacy.

Children living with serious long-term conditions have complex needs. Regardless of the specialty, location, organisation or service focus, this new model of care crosses organisational and inter-agency boundaries to ensure that the healthcare delivered has maximum impact. It has a profoundly positive impact on families.

This integrated and family-centred model of care is strongly recommended for children with complex needs crossing organisational divides.