Representing and engaging with heart families as part of the All Island CHD Network.
(F.E. Group short film to come)
The Family Engagement Group was set up as a sub-group of the Network Board to focus on family and patient experiences, gathering and presenting feedback as well as communicating changes to the services and important information for families.
With representation from heart parents, clinical nurse specialists, clinical psychologists, social workers and family support charities, this group is a key link between the development of the network and how it is benefiting or impacting on heart families on both sides of the border.
In 2018 the Family Engagement Group aim to raise key issues around financial family support payments for families travelling outside of their country to receive treatment and to develop a Family Charter outlining what a world-class CHD Network would look like for heart families.