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Developments in medical technology mean that many disabled children now have complex healthcare needs, on top of the social, financial and emotional stresses that commonly accompany childhood disability. Parents, siblings and children themselves struggle to experience a normal family life whilst time-consuming and sometimes distressing medical and therapeutic routines are regularly carried out in the home. Social support, advice, information and regular breaks from the routines of care are vitally important. However, this help (when it is available) is usually fragmented between different services and professionals —health, education, social welfare and so on. For some families, accessing and co-ordinating these different sources of help are major tasks and additional sources of stress.

international journal of integrated care

Making a difference?: exploring the impact of multi-agency working on disabled children with complex health care needs, their families and the professionals who support them