Background: Integration of care for children with complex care needs is developing slowly internationally. There remains wide variation in the governance of, and access to, care for these children and their families.

Local Problem: There was a need to develop a service that would have a specific remit for organising the overall management and governance of the care of these children in the community.

Method: A bespoke model was established specifically to support the needs of children with complex healthcare needs (CHNs). The sole focus of the team is to provide the highest standard of care to these children and their families, and to enable families to remain central to decision-making.

Intervention: The service for children with CHNs was established in August 2017 with the appointment of a service manager and case managers. A comprehensive training and education programme was put in place to support care to the children and their families.

Results: The service is viewed as delivering high-quality care. Parents and stakeholders highlighted the value placed within the service on individualised care, specialist knowledge and the importance of advocacy.

Conclusions: The model recognises the exceptional lives these children and families live, given the complexities and challenges they have to overcome on a daily basis. The team have built a specialist knowledge and skill set in supporting families and others involved in the care of the child, as they are solely employed and dedicated to the provision of care to children with CHNs. The corporate governance structures seem strong and stand up to scrutiny very well in terms of parents' and stakeholders' perspectives and in the context of published international best practice.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7903071PMC
http://dx.doi.org/10.1136/bmjoq-2020-001025DOI Listing

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