Andy
Retired committee member
Stumbled across this organisation, thought it might be of use to those parents out there.
List of organisations involved can be seen at the bottom of this page, https://disabledchildrenspartnership.org.uk/about-us/, no ME organisation there though.
https://disabledchildrenspartnership.org.uk/The Disabled Children’s Partnership (DCP) is a growing coalition of more than 60 charities who have joined forces, working closely in partnership with parents, to campaign for improved health and social care for disabled children, young people and their families.
List of organisations involved can be seen at the bottom of this page, https://disabledchildrenspartnership.org.uk/about-us/, no ME organisation there though.