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.
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