The Children’s Heart Federation (CHF) is dedicated to helping children with congenital or acquired heart disease and their families in Great Britain and Northern Ireland.
Congenital Heart Disease (CHD) is a general term used to refer to a series of birth defects affecting the heart. It is the most common type of birth congenital condition found. Half of all babies born with CHD will require surgery within the first year of life, sometimes immediately after birth, while the other 50 per cent may require future surgery or medication at some point during childhood. In some cases CHD is diagnosed during an ultrasound scan prior to birth. More commonly, it is diagnosed after birth.
The outlook for children with congenital heart disease varies depending on the type and severity of the heart defect. However, in most cases, the outlook is reasonably good. Due to recent advances in heart surgery, more than 80% of children with CHD will survive into adulthood. As more people with CHD are now living into adulthood, new challenges are posed for their treatment as some people with CHD have complex health needs and require lifelong specialist care. We are a parent-led charity consisting of more than twenty organisations, whose main aim is the support of families of children with heart conditions. We also support a network of over 4000 individual parents.
Our response has been informed by the views of both our member groups and of individual parents.
Do you have any comments on the principles that we have proposed to underpin the process for making investment decisions about specialised services?