Earlier diagnosis and intervention for cerebral palsy would improve outcomes for children and young people with the condition and produce broader benefits for society, according to a recent Parliamentary Inquiry.
The Inquiry report, Enabling Potential – Achieving a New Deal for Children with Cerebral Palsy, which was presented to parliament in January by Education Secretary Nicky Morgan, says there is a lack of understanding of cerebral palsy and its effects amongst general health and education professionals.
Families are struggling 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.
According to the report, around 30,000 children in the UK have cerebral palsy, making it the most common form of childhood disability.
The inquiry, launched in May 2014, was led by Action Cerebral Palsy and supported by Paul Maynard MP, the only Member of Parliament with 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. The taskforce would drive forward nationally agreed protocols around earlier diagnosis and intervention, and improved awareness and training for health and education professionals. It would seek to ensure improved signposting and support for families and greater funding for research into improving outcomes for those with cerebral palsy.
The inquiry heard 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 practical ways in which earlier diagnosis rates can be improved, such as the widespread introduction of the General Movements Assessment, a quick, non-invasive tool for predicting cerebral palsy in very young children, with 98 per cent 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.
Too much localism is seen to be a hinderance to consistent good practice and the Report says a centralised approach to standards and protocols around cerebral palsy is likely to achieve better results than devolving all responsibility for deciding levels of provision to local authorities and clinical commissioning groups.
Parents giving evidence also highlighted a “postcode lottery” for specialist services, with those living in cities predominantly having better access to the right support than those in rural areas. There was also a clear lack of awareness of specialist services amongst many health professionals.
The provision of therapeutic resources in the UK differs greatly from other countries: typical levels of physiotherapy support per child aged from birth to six 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.