On Monday evening, 21st March 2022 at the House of Commons, Mary Kelly Foy MP, Co-Chair of the All-Party Parliamentary Group on Cerebral Palsy, welcomed fellow politicians and policy makers, specialist educators and therapists, leading clinicians and healthcare professionals, local government representatives, leading funders and philanthropists and parents of children with cerebral palsy and young adults with the condition to the launch of Action Cerebral Palsy’s Five-Year Strategy. She called on supporters to join together with Action Cerebral Palsy in working to improve the outcomes for all children in the UK with cerebral palsy.
Action Cerebral Palsy, which is the only charity that actively campaigns on behalf of the estimated 30,000 children with cerebral palsy in the UK, launched its Strategy and Impact Reportas part of the event, in which the charity sets out its aims to work collaboratively across the public, private and third sectors to improve awareness and understanding of cerebral palsy, increase access to the best possible care and support for children with cerebral palsy and their families across the UK, and ensure that families who are on this journey have better information, support and advocacy.
“In spite of the fact that cerebral palsy is the most common physical disability in childhood, the experience of many families with children with cerebral palsy is of being inadequately supported and informed at the critical and devastating point of diagnosis and of having to fight throughout their child’s growing years for the level of service and care their child needs to thrive,”
said Amanda Richardson MBE, Founder and CEO of Action Cerebral Palsy.
This experience was poignantly highlighted during the evening by Dr Helen Hunt, parent to 7-year-old Wilfred who has cerebral palsy;
“The system should be working for you, should be supporting you, should be looking to see how they can make things better for your child, and it hasn’t worked like that. I feel like I am constantly in battle mode ready to put Wilf’s case forward in order for his needs to be met.”
Action Cerebral Palsy is spearheading a number of initiatives to improve education and healthcare support for children living with cerebral palsy in the UK and their families:
- A public awareness campaign about the early warning signs of cerebral palsy – If in Doubt, Check It Out – Action Cerebral Palsy | Signs (actioncp.org)
- CP Covenant – whereby Action Cerebral Palsy calls on councils throughout England to recognise that the complex and varied needs of the cerebral palsy community require better understanding and closer working across several widely differing areas. It is important for someone to hold responsibility at a local level, and Action Cerebral Palsy believe that the convening power of local government is the best way to address this. [Kate, ultimately, we’ll have a CP Covenant campaign that you can link to from here for more information.]
- The continuation of support for the All-Party Parliamentary Group on Cerebral Palsy with further sessions in 2022 focusing on transition into adult services and social inclusion for children with cerebral palsy.
As Mary Foy, MP, the evening’s host said;
“The challenges and inequalities of provision faced by children with cerebral palsy and their families are finally being given attention by politicians thanks to the work of Action Cerebral Palsy. I am delighted to be able to support their drive for reform as part of my role as Co-Chair of the APPG on Cerebral Palsy.”
Paul Maynard, MP and Co-Chair of the All-Party Parliamentary Group on Cerebral Palsy added;
“There is so much policy work that needs doing; focus and detailed advising of government to make sure that the obstacles that are in the way of both children in the education system, adults in the workplace, and for those families trying to support those children throughout their lives are overcome as rapidly as possible. We are making progress. I think that with the existence of Action Cerebral Palsy, a new spotlight has been shined upon this overlooked condition. I look forward to working with Action CP in the years to come.”
Thanks to the work of Action Cerebral Palsy and the wider cerebral palsy community of healthcare professionals, clinicians, therapists, special needs educational institutions, local authorities, third sector organisations and funders, progress is being made. Dr Charlie Fairhurst, Consultant in Paediatric Neurology at the Evelina Children’s Hospital in London highlighted;
“Now is the perfect time for action to develop services across all regions of the NHS. We need to work together to ensure that all children, wherever they live, have equitable access to the services they need and deserve.”
Amanda Richardson concluded with an appeal for support;
“Over the years, we have heard from so many parents like Helen, who feel that their child has been forgotten and left behind. With your help, we can make a difference for Helen’s son and so many children like him with cerebral palsy and ensure that they have access to the right care at the right time and a brighter future.”
Click here to read Action Cerebral Palsy’s Strategy and Impact Report
Of our involvement in the event, Amanda Richardson said:
“We are so grateful to Enable Law for your sponsorship for our event on Monday, 21st March at Portcullis House, Westminster. Action Cerebral Palsy is a small charity with a very big mission and we are hugely grateful to Enable Law for your professional understanding, collaborative spirit and very practical help that you have given this charity over the years.
We were so pleased to be able to welcome key policy makers, leading healthcare professionals and clinicians, funders and philanthropists, and parents of children with cerebral palsy and young people with cerebral palsy to our event to launch our 5 year strategy in working towards greater equity of and access to the best possible care, support and education for children with cerebral palsy no matter where they live in the UK.
We are indebted to Jackie Linehan (and very sorry that she was self-isolating), Lilly Drakoulakou for her incredible organisational skills, Liz O’Mahony for her compassion and support in engaging with the parents who attended, and to John White for jumping in at the last minute to help. We are also so appreciative of the contributions of your wonderful volunteers, Demi and Ben. Thank you to Enable Law for making this event such a success for our charity.”
