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.
There are some indications that families are experiencing benefits from coordinated planning and the key worker approach. It can relieve families of the burden of coordinating services themselves, although it is important to ensure that key working does not further marginalize families’ participation by relocating the problem one step away from them.
Despite evidence of good practice, there is also evidence that families still often experience services as sources of frustration and despair, rather than support and solace. Notions of “fighting” and “struggling” were ubiquitous. Families talk about “taking on the system”. Disagreement and negotiation need to be built into service planning and provision in such a way as to be attentive to quality of process as well as outcomes.
A number of barriers to good practice in the care of children with CHCN have been identified.
* The invisibility of social care work – there is a mismatch between the formal remit of providers and the actual services they provide. Consequently, workers’ formal roles are overly restrictive. There is evidence that this leads to workers “breaking the rules” in order to respond flexibly to families’ needs. Planners, commissioners and managers need to ensure that staff roles are adequate to the remit of their work.
* Disparity of power and responsibility in commissioning arrangements – current commissioning arrangements and associated contracts often focus too narrowly on specific needs, usually clinical, meaning that social care needs and services may be overlooked. The power of service providers to redress this imbalance is restricted.
* Planners and commissioners need to consider how services can be commissioned so as to enable flexibility and responsiveness to be built in at the service design stage. Feed-back loops need to be in place to allow commissioners to learn from service providers in order to improve practice.
* Short-term nature of funding arrangements – this affects the continuity of service provision and familiarity with professionals which matter so much to families. They want services that can continue even when their child’s needs change, rather than having to keep changing the team or the service.
Research abstracts: Children with complex needs