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Improvements in neonatal and paediatric care mean that many children with complex care needs (CCNs) now survive into adulthood. This cohort of children places great challenges on health and social care delivery in the community: they require dynamic and responsive health and social care over a long period of time; they require organisational and delivery coordination functions; and health issues such as minor illnesses, normally presented to primary care, must be addressed in the context of the complex health issues. Their clinical presentation may challenge local care management. The project explored the interface between primary care and specialised health services and found that it is not easily navigated by children with CCNs and their families across the European Union and the European Economic Area countries. We described the referral-discharge interface, the management of a child with CCNs at the acute–community interface, social care, nursing preparedness for practice and the experiences of the child and family in all Models of Child Health Appraised countries. We investigated data integration and the presence of validated standards of care, including governance and co-creation of care. A separate enquiry was conducted into how care is accessed for children with enduring mental health disorders. This included the level of parental involvement and the presence of multidisciplinary teams in their care. For all children with CCNs, we found wide variation in access to, and governance of, care. Effective communication between the child, family and health services remains challenging, often with fragmentation of care delivery across the health and social care sector and limited service availability.

There is more to primary care than solely medical and nursing services. Models of Child Health Appraised (MOCHA) explored the role of the professions of pharmacy, dental health and social care as examples of affiliate contributors to primary care in providing health advice and treatment to children and young people. Pharmacies are much used, but their value as a resource for children seems to be insufficiently recognised in most European Union (EU) and European Economic Area (EEA) countries. Advice from a pharmacist is invaluable, particularly because many medicines for children are only available off-label, or not available in the correct dose, access to a pharmacist for simple queries around certain health issues is often easier and quicker than access to a primary care physician or nursing service. Preventive dentistry is available throughout the EU and EEA, but there are few targeted incentives to ensure all children receive the service, and accessibility to dental treatment is variable, particularly for disabled children or those with specific health needs. Social care services are an essential part of health care for many extremely vulnerable children, for example those with complex care needs. Mapping social care services and the interaction with health services is challenging due to their fragmented provision and the variability of access across the EU and EEA. A lack of coherent structure of the health and social care interface requires parents or other family members to navigate complex systems with little assistance. The needs of pharmacy, dentistry and social care are varied and interwoven with needs from each other and from the healthcare system. Yet, because this inter-connectivity is not sufficiently recognised in the EU and EEA countries, there is a need for improvement of coordination and with the need for these services to focus more fully on children and young people.