Children with complex health and social care needs

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Children with complex health and social care needs (CHCN) have the same "ordinary" wishes and needs as other children. What matters most to them is being able to live at home, go to school, spend time with friends and participate in leisure and community activities with family and peers. This is also important to their families. These are some of the findings of a forthcoming Scie Knowledge Review which identifies what is known about the social care needs of children with complex healthcare needs and their families, and about the services designed to meet those needs
There is no agreed definition of complex health needs among policy makers or professionals. The definition used in the knowledge review cuts across a number of other categorisations - including children who are disabled, children with special educational needs and children with life limiting or life threatening conditions - but is flexible enough to allow for the fact that children with CHCN might fit all or none of these categories.
Much research, policy and guidance is based on the assumption that needs for health, social or educational services can be separated out and provided by different agencies. However, the research into the subject clearly shows that this assumption does not tally with the experiences of children with CHCN and their families. Their health care needs are so much part of their everyday lives that they are inextricably linked with other needs. Dividing needs into separate categories is, therefore, untenable and the structure of the service system creates additional difficulties.
The research into this topic strongly supports a "family centred" approach, so that the needs of all family members, including siblings, are taken into account. There is, however, inevitable tension between child-centred and family-centred practice, including the potentially conflicting needs of siblings. Further research is needed to discover how practitioners can best manage these conflicts.
The study also points to the need to ensure flexibility and responsiveness to each family to allow for the accommodation of family events, emergencies and preferences, including about where and when health needs should be met.
Practitioners need flexibility to work out their roles and responsibilities, so that any one professional can respond appropriately. However, current service structure tends to reinforce professional boundaries. Providers need to think about how they can change professional roles to allow such flexibility and ensure the training of staff to the level and range of skill required.
There is strong evidence that the way in which professionals provide services is as important as the service itself. Parents feel emotionally supported by helpful and compassionate relationships. Organisations need to pay attention to how services are delivered and support the inter-personal skills required.