We are delighted to announce that DLA ASSESSORS will now receive guidance and be trained on congenital heart disease (CHD).
A medical professional from the CHD community has been recruited as a medical advisor to the DLA review panel.
For over a year charities including ECHO have been working together to ask the government to include information about congenital heart disease in the DLA assessment guidelines.
We have had many joint charity meetings and have attended meetings with MP’s, including an event at the House of Commons where two ECHO members came along to share their stories with MP’s.
Professor Anderson represented Evelina London and the BCCA at the event where we asked MP’s to contact ministers and encourage this change.
Lots of ECHO members sent letters and emails to their MP’s asking them to support us and shared personal stories with them.
We have had a welcome response telling us that changes will be made and CHD will be included in the pack.
Whilst we know this means not all children who apply will be successful, and it’s important to always remember that not all children are eligible, we celebrate the news and hope that in future assessors at least understand the condition a little more when making those important decisions.
THANK YOU ECHO members for getting involved and making change happen!
We have demonstrated the power in coming together as one community of families, medical professionals and our partner charities.
Thank you also to @oneminutebriefs for running with this campaign and helping us to shine a spotlight on this important issue.