ECHO advocacy work includes being part of the ongoing NHS England Standards Specification for CHD Review, which is tasked with reviewing the UK wide CHD surgical service to ensure that all units are of a high standard.

We also represent member’s views within various campaigns including issues such as benefits and travel grants awarded to families affected by CHD, how children are supported in schools and what support is available nationally.

We recently partnered with other charities in the CHD community to successfully campaign for changes to the guidance supplied to assessors of Disability Living Allowance.

Changes due to be implemented under the new Standards
ECHO welcomes NHS England’s set of congenital heart disease standards and service specifications. ECHO aims to work closely with members on patient and parent engagement in this area, communicating changes or development clearly, and will be reviewing the geographical areas of our support to best fit with our purpose.

The number of children born with CHD is expected to rise, as the birth rate rises. The number of operations and other interventional procedures has been increasing at three to four times the rate of population growth, and this is expected to continue.

NHS England