Short breaks for families caring for a disabled child with complex health needs

Data from two research studies concerned with disabled children who have complex health needs were analysed in relation to families’ experiences of accessing short breaks (respite) services. Many families experience serious problems finding suitable services which can cater for both their child’s complex health needs and their own need for significant levels of support. This paper highlights which services families were using and the difficulties of obtaining a coherent and consistent package of support. Regulatory concerns relating to the piece‐meal provision of services and use of children’s hospices are raised along with recommendations for improving policy and practice.