Children’s Heartbeat Trust proactively campaign to improve children’s heart services across Northern Ireland.
In 2015 Children’s Heartbeat Trust were successful in engaging the Health & Social Care Board to update their travel policy to reflect the growing numbers of children travelling to England for heart surgery and to increase the financial provision and logistical support for families making this journey.
Since then, further issues regarding financial support and unsatisfactory arrangements have arisen and the charity has continued to raise concerns and campaign for family focused policies. If you or your family have experienced issues regarding travelling for your child’s surgery please contact us at firstname.lastname@example.org.
In collaboration with other children’s charities; SHINE, Angel Eyes NI and the Rare Disease’s Partneship NI, Children’s Heartbeat Trust are calling for the introduction of a Northern Ireland Register of Congenital Anomalies.
This register would have a number of significant benefits; enabling the investigation of clusters of birth defects, tracking new health threats, providing better understanding of how public health recommendations or efforts to provide appropriate care to high risk mothers are working, evaluation of prenatal screening services, and facilitating health authorities planning and delivery of the services needed to help children and their families.
The charity has been in contact with the Health & Social Care Board about the length of time children are waiting to be seen by a paediatric cardiologist. Given the complex nature of congenital heart disease, and the capacity for a condition to advance and develop as a child grows, it is crucial that waiting lists remain within the set targets.
In response, additional waiting list activity has taken place, however Children’s Heartbeat Trust are still pushing for the centralisation of waiting lists to ensure appropriate management of waiting times and equitable access throughout Northern Ireland.