Children's Heartbeat Trust (Northern Ireland)
Charity number: 102410 
Website: www.childrensheartbeattrust.org
Description:
Children's Heartbeat Trust supports children and young people living with congenital heart disease (CHD) and their families in Northern Ireland. Heart disease is the most common birth defect. Over 200 babies are born every year with heart disease in N.I and they need our support. Children's Heartbeat Trust currently rely on voluntary donations to fund its services including donations from individuals, businesses, churches, schools and community organisations across the province. We receive no Government funding and rely on the generosity of public donations to maintain our current services.
Children's Heart Surgery in Northern Ireland ceased in October 2014 meaning that what is a very difficult time for any family is now amplified for those living in Northern Ireland. If a child needs surgery, many families are now finding themselves having to travel for essential medical intervention.
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We work closely with the paediatric cardiology team in Clark Clinic at the Royal Belfast Hospital for Sick Children (RBHSC) to support the children's cardiac services and ensure children receive the best clinical care and treatment possible. We help fund medical equipment, initiatives and research projects as well as providing parent accommodation within the hospital. We are also funding elements of the new Children's Heart Centre being built at the hospital in 2018 to create a patient and family centred environment.
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We provide a dedicated Family Support Team to meet and support families who are in Clark Clinic or at Outpatients. Through this we gain greater understanding of what a family's immediate and long term needs are. This a key element of our services.
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As part of our Family Support we offer a variety of family support services including twelve local parent-led support groups, counselling, respite caravans, information, family days and paediatric first aid training to those affected by CHD.
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We support young people aged 12 - 16 living in NI with congenital or inherited heart disease through our Teens programme which includes regular meetings, advice and support as well as an annual residential. This support enables peer to peer support; increase confidence, self-esteem and facilitating teenagers to access lifestyle information from specialists in a relaxed and confidential setting.
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As a local charity we campaign for children's cardiac services, representing parents and families to secure the best possible care for children in Northern Ireland. Currently, the majority of children need to travel to England for heart surgery and we offer financial support to these families at what is an emotionally stressful and financially difficult time. As a member of the new all-island Congenital Heart Disease (CHD) Network Board, we are working to ensure the provision of high quality CHD services for children across NI and ROI within the new North-South partnership.
