CHSF’s private community group on Facebook is a peer-support forum for heart families and patients to network with others who have had shared experiences.

The group consists of patients with congenital heart disease, parents and family members who find it an enormously supportive service. Many networks and friendships have been formed as a result of this private group. We are very proud to witness how our heart families help each other.

Me and my family were incredibly grateful for the support from CHSF’s Facebook community. We didn’t know what to expect during open heart surgery, and to receive both words and pictures of comfort was really reassuring.” — Mia, Heart Mum

Set up in 2010, the group currently has over 5,300 members. Members have to answer a few basic questions to join, to ensure it is the right group for them. Just like any other forum, the CHSF team monitor posts to make sure essential etiquette is followed.

The main benefits for members are that it can provide reassurance, companionship and basic information which doesn’t need medical input. The group is not a medical resource and does not provide medical advice. If we see a question which is medical, we refer members to the relevant hospital teams.

Speaking to other patients or parents of children with heart conditions can be a lifeline.

Support for families: July 2025

Support for families: July 2025

“Nice to have a chat with a friendly face offering financial and moral support” - parent on the ward During the month of July... 20 referrals received for targeted Family Support 36 families engaged With 12 young people worked with and supported Financial support in...

Louie

Louie

Louie’s journey through complex heart surgery has been nothing short of extraordinary. In this blog, Louie's mum Emily shares the story of their time in hospital, the incredible care they received and the strength their family found through the toughest of times. “On...

Support for families: June 2025

Support for families: June 2025

"As we reach the halfway point of the year, we wanted to take a moment to share what the Family Support Team has achieved so far in 2025. "Each quarter, we reflect on our progress to help everyone understand the impact we've made. "This update gives a picture of our...