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Variations in care across England for children with Cerebral Palsy

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    A blog considering Action Cerebral Palsy’s recent report analysing the availability of support and services for children with cerebral palsy in England.

    By Kerstin Kubiak

I have been reading with interest Action Cerebral Palsy’s report: ‘Variations in care: an analysis of cerebral palsy provision’ which was published last month (July 2016) following a study carried out earlier in 2016 and involving every Clinical Commissioning Group, Local Authority and NHS Trust in England and considering the availability and provision of services for children with cerebral palsy.

Action Cerebral Palsy

‘Action Cerebral Palsy’ are a consortium of charities working with children and families with cerebral palsy. They state:

Our vision is that every child and young person in the UK with a cerebral palsy is able to access, from birth, the best possible intervention, care, education and support to meet their complex and changing needs.

Action Cerebral Palsy works towards improving public, professional and political awareness of cerebral palsy and to develop and improve models of best practice at a local and national level.”

Information gathering on provision of services for children with CP

In order to prepare their report considering the provision of services to children with cerebral palsy in England, Action Cerebral Palsy carried out a ‘Freedom of Information’ study in 2016. Under the Freedom of Information Act 2000 anyone is entitled to access recorded information held by public sector organisations, such as government departments and Health Trusts, subject to some restrictions.

Action Cerebral Palsy approached 209 Clinical Commission Groups, 151 Local Authorities and 227 NHS Trusts, asking each of them for recorded information on matters such as:

  • Whether they commissioned services such as speech and language therapy, physiotherapy, occupational therapy and conductive education for children with cerebral palsy;
  • The total number of children/young people in their population diagnosed with cerebral palsy within the last 5 years;
  • A list of organisations within the local area which provide specialist treatment for children with cerebral palsy;
  • Whether there is a specific timescale set out in their care pathway for referral for diagnosis of cerebral palsy, from the point of formal identification of symptoms.

Report analysing results of study

In their report Action Cerebral Palsy highlighted a number of concerns based on the information, or lack of information provided:

  • Many organisations approached were unable to provide any, or any clear, information about the numbers of children in their locality with cerebral palsy or the availability of specialist services for children with cerebral palsy.
  • Where information was provided it was clear that levels of care and provision of services were variable from location to location, with some children having a wide range of service available to them and others finding support and services extremely limited, effectively creating another postcode lottery.

Action Cerebral Palsy have made a number of recommendations based on this research, including maintaining a register of children with cerebral palsy, the availability of specialist training to health professionals to improve the identification of children with cerebral palsy and improved access to information.

Arguably one of their key recommendations is seeking to ensure care and support is available in the first 24 months of a child’s life as research has shown that intervention during this period has the best chance of being effective and making a big difference to the child in later life.

Our experience

My colleagues and I act for a number of children and young adults with cerebral palsy where they suffered injury due to failings in medical care around the time of their birth. The results of Action Cerebral Palsy’s research very much mirrors the information we are given by our clients and their families, particularly that there are wide variations in provision in different areas of the country, with some children receiving little or no specialist input unless and until they are able to procure this privately.  For others they may face lengthy battles or have to travel long distances to obtain vital support.  This is a situation which cannot continue.

We note that the National Institute for Health and Care Excellence (NICE) are presently consulting on draft national guidelines for the diagnosis, assessment and management of children (and young adults up to the age of 25) with cerebral palsy and I will be considering this further in my blog tomorrow.

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