Action Cerebral Palsy
Action Cerebral Palsy is delighted to be sponsoring the first All-Party Parliamentary Group on Cerebral Palsy to be chaired by Paul Maynard MP. The first two virtual sessions will take place in November and December and, in line with our Identify, Intervene, Impact campaign, will focus on early intervention and pathways of care for
infants and young children at risk of or with cerebral palsy.
The APPG is now calling for written evidence from organisations and individuals who have experience of this topic. Please see the call for evidence and terms of reference below:
CALL FOR EVIDENCE
The new All-Party Parliamentary Group on Cerebral Palsy is launching an open call for evidence for its first two virtual sessions:
1. Early identification, assessment and intervention for infants and young children at risk of cerebral palsy (Wednesday 18 November, 2 p.m.)
2. Standard national pathways of care and centres of excellence for infants and young children with cerebral palsy (Wednesday 16 December, 2 p.m.)
We welcome organisations who wish to contribute to these sessions, or the deadline for submissions for our report to Parliamentarians is Wednesday 23 December. We welcome input from any interested stakeholder on these topics. This evidence will be used to inform the recommendations the APPG makes to Government.
We therefore welcome concise responses that focus on policy recommendations as well as key facts and figures.
Please limit your submission to two sides of A4 and send with the subject line:
APPG on Cerebral Palsy – call for evidence, to CerebralPalsyAPPG@connectpa.co.uk The key themes we seek evidence on are:
• The importance of surveillance of infants at risk of cerebral palsy, the early identification of signs of cerebral palsy and onward referral for assessment and intervention.
• Why infants at risk of cerebral palsy are not being referred quickly enough for assessment and intervention.
• The state of health visiting, primary health care and local paediatric services, and their role in the early identification, referral and intervention of infants and young children at risk of cerebral palsy, and how their services could be improved.
• Workforce skills and knowledge of cerebral palsy and abnormal motor development in primary healthcare, health visitors and early years practitioners.
• How could communication and support networks around the family during the assessment and diagnostic process and beyond be strengthened?
• Why and how the Cerebral Palsy in Children and Young People Quality Standard [QS162] October 2017 should be implemented as standard across all regions and the impact of this not being the case on children with or at risk of cerebral palsy and their families.
• What changes are required so that care for infants and young children at risk of, or with, cerebral palsy and their families provides a continuum of swift and seamless pathways between local paediatric services and centres of excellence, in which multi or trans-disciplinary teams of cerebral palsy specialists work together on assessment, monitoring, therapy and treatment.
• Why it is crucial that such pathways are centrally funded, rather than reliant on regional commissioning models.
• What the Government can do to ensure national standard best practice pathways of care for all infants and young children at risk or with cerebral palsy across the UK.
You can download a copy of this call for evidence here
Action Cerebral Palsy began in 2013 as a national consortium of specialist charities working with children with cerebral palsies and their families.
Action Cerebral Palsy became a registered charity in 2016 and now works at a national level towards improving public, professional and political awareness of the issues facing children and young people with cerebral palsies.
We aim to represent the best interests of the CP community to policy makers and are committed to developing models of best practice at national and local levels.
Our vision is that every child and young person in the UK with cerebral palsies is able to access from birth onwards the best possible intervention, care, education and support which meets their complex and changing needs.
Action Cerebral Palsy will work towards improving public, professional and political awareness of the issues facing children and young people with cerebral palsies. We are committed to facilitate the development of models of best practice at national and local levels.