Making doors open: caring for families of children with severe cerebral palsy

Cerebral palsy is a relatively rare condition affecting approximately 2-2.5 children in every 1,000 (Parkes et al 2001). It is a leading cause of physical disability in childhood and is often associated with severe motor and other impairments (Table 1). Improved survival of small and premature babies who are particularly at risk of developing the condition raises concerns about increasing numbers of children with cerebral palsy possibly with more severe forms. In the UK, information about the number and needs of children with CP is not collected routinely. The most reliable sources of information on CP in the UK comes from five dedicated case registers which have monitored live births in their respective geographically defined areas since the 1960s and 1970s. These registers have formed a collaborative network called the United Kingdom Collaboration of Cerebral Palsy Registers (or UKCP) and are listed in Table 2. All five registers are currently funded and all are active in surveillance activities and research.<br/><br/>