The all-island Congenital Heart Disease (CHD) Network Board, comprising of patient representatives, clinicians, service providers and commissioners is now meeting monthly. Children’s Heartbeat Trust sit on the Board to represent the views of children and their families from Northern Ireland. The aim of this Board is to develop a world class patient and family-centric Congenital Heart Disease Service for the island of Ireland and the charity will be working hard to ensure that this aim is at the centre of all the work of this group.
Children’s Heartbeat Trust are also Co-Chair of the Family Engagement Group which will feed into the Network Board. This group focuses on family and patient experiences, gathering and presenting feedback as well as communicating changes to the services and important information for families. The first meeting is scheduled for September and is a key way that we can shape the network service from the outset. It is really crucial that we take this opportunity to share your experiences, thoughts and ideas on what is working well and how the service can be improved. Please keep an eye on our website and facebook for ways you can get involved.
Since May 2015 catheterisations for paediatric patients have moved from Belfast to Dublin and are undertaken in Dublin by the Belfast team. By all accounts, both clinical and from families, this transfer has worked well which is testimony to the hard work and collaboration of a large number of clinicians and nurses from both the Belfast and Dublin teams. If you are awaiting a cath appointment you should be contacted by the team in Clark Clinic with all the information you require.
A huge challenge for our heart families is that currently the vast majority of families are still travelling to England for their child’s surgery. Although we have received assurances that when emergency surgery is required this will happen in Dublin, we are pushing for the investment needed to improve PICU capacity in Dublin to reduce the amount of babies, children and families having to get on a plane to access planned care.
Children’s Heartbeat Trust are here to support and represent our heart families during this transition period, so if you have any concerns or questions you can call us on 028 9031 2228 or email [email protected]