Fighting for a better deal for kids with cerebral palsy

A press release:

A new campaign and parliamentary inquiry launches this month focused on getting a better deal for children with cerebral palsy across the UK. 
 
There are estimated to be 30,000 children in the UK with cerebral palsy.  However support is inconsistent, leading to very different outcomes for different children.  
 
Action Cerebral Palsy is a consortium of specialist charities including Paces Sheffield working with children with cerebral palsy and their families.  One of the primary objectives of the campaign will be to call for more consistent access to early and intensive support.
 
Norman Perrin Chief Executive and co-Founder of Paces said: This is an exciting moment. We at Paces are delighted that an initiative of ours in hosting a dinner at Yorkshire Sculpture Park in November 2012 for leaders of UK centres like Paces has finally come to fruition in Action Cerebral Palsy.
 
Chair of Action Cerebral Palsy, Amanda Richardson says: “In our centres, we see every day the amazing progress that children with cerebral palsy can make, given the right support. But we are fully aware that only a small proportion of the 1,800 children born with cerebral palsy every year receive the early and intensive intervention that can transform their lives.  By joining forces, we aim to get a better deal for all children with cerebral palsy.”  
 
Early and intensive intervention can lead to significantly better outcomes for children with cerebral palsy and significant future benefits for society.  With appropriate intervention, high levels of neuro-plasticity can be harnessed, allowing undamaged parts of the brain to take over some of the functions of the damaged part. A child’s motor learning at this early stage will form the foundation for the independence that they can achieve in later life, independence that will enhance individual outcomes, improve participation in all aspects of life, reduce the costs of social and health care, and for many, enable greater academic achievement and ability to work.
 
Action Cerebral Palsy will campaign for: 
 
•	Every child with cerebral palsy in the UK to have consistent access to high-quality services, enabling them to achieve their full potential
•	Higher expectations of the potential outcomes for children and young people with cerebral palsy 
•	The earliest possible identification, assessment and diagnosis for infants and very young children with cerebral palsy
•	A national early intervention programme for young children with cerebral palsy, with ring-fenced funding
•	Better guidance and training for professionals working with children with cerebral palsy 
 
 
 
 
Louise Taylor, mother of 7-year-old Sonny who has cerebral palsy and attends PACE, one of the consortium centres, said: [feel free to replace this with a quote from a parent from your own centre, focused on intensive or early intervention – I have parental quotes for Fareham and NICE so far]
 
“When Sonny was born we were given details of a bleak and uncertain future, but he is now highly motivated and has made massive achievements since he started to attend PACE.  Early and intensive support for children like Sonny really can benefit not only the child, but also all those around him.  We also know that the financial support Sonny will need in the future is now significantly less, thanks to all the improvements he has made.”
 
Jabeen Akhtar, mother of two disabled children aged 3 and 4 who attend Paces School said:
Both of my children are making great progress at Paces School and I want them to continue here. Getting the education I want for them now has been a huge battle for me. I have had to take their cases to Tribunals. The early years are so important. Parents like me should not have to fight like this. 
 
Paul Maynard, MP for Blackpool North & Cleveleys and the only Member of Parliament with cerebral palsy is supporting Action Cerebral Palsy.  This month he is launching a parliamentary inquiry to identify the policy changes needed to help children with cerebral palsy achieve their full potential.
 
This inquiry will build on the recent Government announcement that health bodies will now be obliged to discuss with parents the educational advice, guidance and intervention services available to children with complex developmental and/or sensory needs, such as cerebral palsy, in the very early years. This is a very positive step and will lead to a more joined-up approach between the early years education and health systems, meaning parents can ensure that their children receive crucial support that they may not have been aware of.
The inquiry will explore the more fundamental changes needed to improve early intervention and more joined up working across education and health services for children with cerebral palsy.
Triple gold Paralympic medalist Sophie Christiansen OBE is also supporting Action Cerebral Palsy, she said: 
 
“I'm supporting Action Cerebral Palsy as I know from personal experience the massive variation of help available for kids with cerebral palsy, dependent on where you live.  If children with cerebral palsy are going to reach their full potential, they should all have access to the same high-quality services.  It not only makes social sense, but also financial sense."
 
For more information about Action Cerebral Palsy or Paces, please contact: 
Norman Perrin CEO Paces Sheffield
- 0114 284 4488
- normanperrin@pacessheffield.org.uk