Linda Maynard and Deborah Lynn give an account of a service that filled a critical gap in provision and empowered families to make choices about care

This study outlines an innovative, English hospice-based service that provides 24/7 care for children with life-limiting conditions and their families. Operational objectives were: symptom management; open access to families and professionals; choice in place of care and of death; and collaboration to develop shared pathways and management plans.

Service standards were audited through questionnaires completed by professionals and families. Findings demonstrated that the nursing team filled a critical gap and met its pre-set standards. Keys to success were: having the right level and mix of specialist and advanced skills; funded on-call arrangements; anticipatory planning; symptom management plans; and clinical supervision. Further recommendations were to develop a multi-agency workforce strategy, and to increase capacity in the children’s sector to undertake academic research measuring the impacts of interventions.