Government must ‘act now’ to introduce a national register of children with cerebral palsy, says charity

Wednesday, January 16, 2019

According to Action Cerebral Palsy's chief executive Amanda Richardson, too many children with the condition in the UK are missing out on appropriate models of intervention or the right funding because services are a ‘postcode lottery’.

Action Cerebral Palsy is calling for the government to support a wide-ranging strategy with the potential to significantly boost these children’s health and early education outcomes, while supporting their families.

The impetus behind the move is based on pioneering intervention models used in Australia, which are flagged up in Action for Cerebral Palsy’s new report. Australia is a world leader in the treatment of cerebral palsy, and has improved outcomes for babies and children with the condition.

A key strategy being called for is to create a national register of children with cerebral palsy which will give local government, education services and the NHS a clear insight into how best to direct services and funding

Amanda Richardson, chief executive of Action Cerebral Palsy, who was awarded a Winston Churchill Memorial Trust Fellowship award in 2018 to tour Australia, to research the country’s interventions, said: ‘Cerebral palsy services are a postcode lottery in the UK, with disjointed and erratic provision limiting health and education outcomes for young people with the condition.

Children’s development needs should lead policy

Support for the SENCO

‘The Australian model demonstrates that, with a coherent national strategy and funding structure, health and early education outcomes for children with the condition can be dramatically improved. Today I’m calling on the UK Government to urgently review their strategic approach to care, training and funding to improve life chances for young people with cerebral palsy.’ 

The report’s key recommendations include:

  • The development of a national cerebral palsy register with the aim of collecting data to provide information for research, outcomes of clinical practice and policy development.
  • To develop clinical pathways for babies that require greater surveillance, including routine screening at three months and follow-up checks for those 'at risk of cerebral palsy'.
  • Improved training and awareness of the risks and signs of cerebral palsy in babies and young children among practitioners and parents, and more specialist health visitors.

An estimated 2 per 1,000 live births in the UK result in a diagnosis of cerebral palsy according to the National Institute of Clinical Excellence (NICE).

Action Cerebral Palsy’s ongoing ‘Identify, Intervene, Impact’ campaign aims to improve the early identification of cerebral palsy, to secure timely health and educational intervention to treat and manage it, and to ultimately better the outcomes of all children with the condition. More information here






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