What We Do
Our work is dedicated to levelling the playing field for all children with or at risk of cerebral palsy by raising awareness with politicians, professionals and the general public about the issues facing the 30,000 children and young people in the UK with cerebral palsies and to push for improved access to care and support, to share and develop models of best practice and ultimately have a lasting positive impact on the lives of the 1,800 children born each year who will be diagnosed with cerebral palsy.
- We engage with policy makers in order to promote the creation of a national strategy and care pathways for intervention and provision for children with cerebral palsies. In 2020 and 2021, Action Cerebral Palsy sponsored the first ever All-Party Parliamentary Group meetings on cerebral palsy. Click here to read the reports.
- We are a source of informed advice on cerebral palsy for policy makers and the public. We have conducted a number of parent surveys and commissioned two Freedom of Information Act reports on cerebral palsy provision across the UK. Click here for those reports.
- We work to represent the best interests of the cerebral palsy community, and this included contributing to the NICE Guidelines for the assessment and management of children under the age of 23 with cerebral palsy. Click here to read the guidelines.
- We work with parents, professionals and organisations to facilitate the development of best practice for intervention, care, education and support for children and young people with cerebral palsies across the United Kingdom. Click here to read our report, Enabling Potential: Achieving a New Deal for Children With Cerebral Palsy, published in 2015 and that received almost 300 submissions from education and health professionals, those living with cerebral palsy and their carers, charities and other organisations and officials from the Department for Education.
- We facilitate and disseminate research on cerebral palsy and therapeutic and educational intervention.
For more information on how we are improving public and professional awareness of the issues facing children and young people with cerebral palsy:
Awareness Campaign
Parents Resources
Professionals Resources
Research
Awareness Campaign
Raising public awareness of the warning signs of cerebral palsy in very young children and the need to seek help from their GP, doctor or health visitor.
Parents Resources
Supporting families with information about the practical care, support and help available to them and their children at every stage of their journey.
Professionals Resources
Supporting professionals with information about how they can help to support and care for children and young people with cerebral palsy.
Research
Understanding and sharing international research and reports about best practice in the care and support of children and young people with cerebral palsy.
Still so much more to do:
- Working at a national level to remove barriers to healthcare, education and funding for families with children with cerebral palsy.
- Continuing to raise awareness of the warning signs of cerebral palsy in very young children to ensure they receive the care and support they need at this crucial time in their lives.
- Supporting parents with more practical information no matter what stage of their journey they are on.
- Supporting first line health professionals and educationalists with information to help them assess, recognise, and better support children and young people with cerebral palsy.
- Working with others to create a National Cerebral Palsy Register to improve the collection of data about the incidence, diagnosis, medical history, developmental needs and outcomes of children with cerebral palsy. A robust and consistent data collection system will improve service planning, support the implementation of fit for purpose medical, care and educational pathways and facilitate research into the condition.
- Learning from those centres of excellence here in the UK as well as from other countries to establish models best practice for care, education and support and working with politicians, the NHS, private and 3rd sector to establish a network of multidisciplinary centres of excellence.
- Working with professionals across the public, private and 3rd sector to implement best practice pathways of care through the UK.
Our Reports
Please click below to view our reports:
If you would like to get involved and help us to make a difference, we could use your support
Contact Us
