Improving access to timely and appropriate care for children with cerebral palsy and hip displacement: The importance of introducing a Scottish national register

Children with cerebral palsy are at high risk of hip displacement and dislocation. One method of reducing the pain and cost of reconstructive and salvage surgeries is to carry out regular screening and treatment before severe displacement occurs. In Sweden, Australia and Tasmania cerebral palsy registers and hip surveillance programmes have been successfully implemented. The register is a key component of these programmes as it enables the children to be regularly monitored, and those at risk of hip displacement to be identified and treated early. These countries have shown a decrease in the number of hip dislocations in children with cerebral palsy, and orthopaedic surgeons in Scotland are interested in introducing a similar register and surveillance.

However the establishment and maintenance of the core component of the screening programme - a register of children with cerebral palsy - is not straightforward. In Scotland, a national charity-funded register for children with cerebral palsy (CPRS) has ‘failed' twice. Given the importance of a register in terms of the care of these children, it is important to evaluate the failings of the CPRS register and to explore why it has been unsuccessful.

Through analysis of healthcare systems, and structured and semi-structured interviews with healthcare professionals, it has been found that problems surrounding registers in Scotland include: inadequate communication, a lack of appreciation of the importance of a register, failure to gain parental consent, incomplete data collection, differences in the definition of cerebral palsy and inclusion/exclusion criteria, and a lack of multidisciplinary approach from healthcare professionals.

Because of the variety of stakeholders involved in the provision of care for children with cerebral palsy including academics, healthcare professionals, parents and charities, the purpose of the register must be clearly defined for it to be successful. Each stakeholder must be fully engaged and convinced of its importance and its centrality to providing the best possible care for children. Without stakeholder buy in at all levels, it will fail once again. Our observations suggest ways in which strategies could be developed, applicable across different registers and programmes, to ensure stakeholder engagement and health care and parental compliance with the maintenance of a national cerebral palsy register.