A Parliamentary inquiry into cerebral palsy has found:
- Approximately 30,000 children in the UK have cerebral palsy, which is the most common form of childhood disability
- Earlier diagnosis and intervention and the resulting improved outcomes is crucial not only for the child, but also for wider society
- Localism is often the enemy of consistent good practice
- Therapeutic resources in the UK are significantly lower than elsewhere
- There is a lack of understanding of cerebral palsy and its effects amongst health generalists and educationalists
- Families continue to struggle to gain appropriate levels of support and are spending unnecessary time in the courts fighting for the right provision for their child at considerable expense to themselves and local authorities
- There is a clear need for a national strategy to drive forward change
The inquiry, launched in May 2014, has been led by Action Cerebral Palsy and supported by Paul Maynard, MP for Blackpool North & Cleveleys and the only Member of Parliament with cerebral palsy. The inquiry aimed to identify the policy changes needed to help children with cerebral palsy achieve their full potential. It heard evidence from education and health professionals, those living with cerebral palsy and their carers, Government officials, charities, legal professionals and other organisations with an interest in cerebral palsy.
The inquiry’s main recommendation is for a multi-disciplinary taskforce to be established to develop a national strategy for children and young people with cerebral palsy to drive forward: nationally agreed protocols around earlier diagnosis and intervention; improved awareness and training for health and education professionals; improved signposting and support for families; and greater funding for research into cerebral palsy to improve outcomes.
The inquiry heard overwhelming evidence from both families and professionals across the health, education and legal sectors that earlier diagnosis and intervention could make a huge difference to the child’s potential, as well as reduce their dependence on the state as they grow up. Specialists reinforced the benefits of taking advantage of high levels of neuro-plasticity in very young children, so undamaged parts of the brain can be trained to take over some of the functions of the damaged part. Practitioners argued that earlier and more intensive therapeutic intervention would provide real financial returns, given the greater ability, and potential for independence that children with cerebral palsy would then be able to achieve.
Dr Karen Horridge, Consultant Paediatrician and Chair of the British Academy of Childhood Disability who gave evidence said: “Early therapy input to neonatal and special care baby units is essential, with careful, expert follow up of infants at high risk of evolving cerebral palsies so that interventions can begin without delay”.
The recommendations from the inquiry report include some very practical ways in which earlier diagnosis rates can be improved, for example the widespread introduction of the ‘General Movements Assessment’ which is a quick, non-invasive tool for predicting cerebral palsy in very young children, with 98% accuracy.
The inquiry also highlighted the need for improved training for clinical and educational practitioners working with children and young people with cerebral palsy so that the right support can be identified and given at the right time.
The inquiry heard that localism was often the enemy of consistent good practice and that a centralized approach to standards and protocols around cerebral palsy was likely to achieve better results than devolving all responsibility for deciding levels of provision to local authorities and Clinical Commissioning Groups. Parents also highlighted a distinct postcode lottery for specialist services, with those living in cities predominantly having better access to the right support than those in rural areas. Furthermore there was a clear lack of awareness of specialist services amongst many health professionals.
John de Bono QC who gave evidence commented: “There is a huge variation in the quality and quantity of educational support [for children with cerebral palsy] depending on postcode and the ability of parents to fight for better provision.”
Therapeutic resources in the UK are hugely different to other countries: for example typical levels of physiotherapy support per children aged 0-6 years in the UK is 12 hours a year, compared with Canada at 6.5 hours per month.
The need for improved support for parents was also clearly evidenced throughout the inquiry by both parents and practitioners, with many parents highlighting the ‘battle’ they had faced through the courts to secure the right support for their child – time better spent on supporting their child.
Amanda Richardson, Chair of Action Cerebral Palsy said: “This inquiry has highlighted the huge potential of children with cerebral palsy, if the right support is given earlier in their lives. We are now focused on working with Government and health and education professionals to drive forward change.”
Following the inquiry, Action Cerebral Palsy now plan to work closely with Government officials and other key stakeholders to implement the inquiry’s recommendations, for example building on the SEND Code of Practice introduced through the new Children and Families Act to ensure the best possible health and educational outcomes for children with cerebral palsy.
Five times gold Paralympic medalist Sophie Christiansen OBE is also supporting Action Cerebral Palsy, she said: “The overwhelming message from this Parliamentary Inquiry is that more can be done for children with cerebral palsy so that they can fulfill their potential, enriching and adding value to our society.”
About Action Cerebral Palsy
Action Cerebral Palsy is a consortium of specialist charities working with children with cerebral palsy and their families. Find us on www.actioncp.org, Facebook: www.facebook.com/actioncerebralpalsy and on Twitter: @action_cp