Provision of 24/7 symptom management for children with life-threatening conditions via a whole network approach is unusual. We have evaluated this innovative service method, delivered by five clinical nurse specialists, across a predominately rural geographical area, aligned to a dispersed Children’s Hospice Service. Service objectives were: symptom management support; open access to families and professionals; choice in place of care and death and collaboration to develop common approaches, shared pathways and management plans.
An 18 item questionnaire was developed to audit service standards; two open questions aimed to elicit good practice and areas for development. Stakeholders (n = 48 families, n = 121 hospice staff and n = 129 external professionals) were surveyed by internal or external mail. Overall response rate was 47% (families 54%; hospice staff 50%; external professionals 41%).
Two thirds of respondents reported that the team provided as much as needed with service standards. Around the clock symptom management support was highly valued (88% of respondents reported as much provision as needed). Assessment of emotional symptoms and response to telephone queries within four hours were areas for development. High levels of satisfaction were reported (n = 108, 83%) and three quarters of respondents rated the team extremely responsive, reliable and flexible. Comparison between groups showed no significant differences except for: usefulness of support and advice given by the team; usefulness of the ‘out of hours’ call handling service and extent to which the team assessed a child’s emotional symptoms. Qualitative data revealed that the team ‘spanned organisational boundaries’; provided care ‘any time of the day and night’; ‘filled a critical gap’; ‘gave families time’ and was perceived by them as ‘the glue between professionals’ and a ‘life line’.
The service had a much greater impact that expected in all key objectives and demonstrated that a network approach to service delivery is possible and highly effective.
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