Parents of children with spina bifida face a life-long fight for services for their children.
A new study reveals that services for the 500 children with spina bifida in Ireland are grossly under resourced.
Temple Street Children's University Hospital has launched a study which shows 54% of the children do not have access to all the experts needed to treat their disease.
This is despite the fact that 69% of children with spina bifida over the age of 3 use a wheelchair, and most require continuing support.
Dr Jane Leonard is a consultant paediatrician and spina bifida service leader at Temple Street.
She said the study shows major deficits in services at national and local level, and this needs to be addressed urgently.
Dr Leonard says parents currently face a life-long fight for services.
