Expanding the services available for children born with congenital heart disease and their families is essential to create a world leading service – that was the message today as the Children’s Heartbeat Trust launched their 2017-2020 Strategy document at an event in Belfast.
The charity, which was founded in 1984, helps children born with congenital heart disease and their families through a range of initiatives giving direct support as well as funding for the Clarke Clinic at the Royal Belfast Hospital for Sick Children
Speaking at the launch of the strategy document, charity Chief Executive Sarah Quinlan said:
“Over 200 children are born every year in Northern Ireland with congenital heart disease which is Northern Ireland’s most common birth defect. Many face complicated surgery to treat their conditions, including open heart surgery, at a very young age. The recent £42m investment in an all-Island Children’s Heart Surgery network will play a vital part in treating these children and to compliment this important development, we want to ensure that the wider services, from family support and youth services to research and awareness campaigning, are enhanced give heart families across Northern Ireland a world leading support and care from diagnosis until adulthood.
“Children’s Heartbeat Trust has for many years supported both the Clark Clinic and children born with congenital heart disease and their families. Our 2017-2020 Strategy document is published today following an extensive period of analysis and consultation with families, doctors, nurses, government and all of those we work with,” said Sarah.
The 2017-2020 strategy document outlines the charities key priorities in the coming years which includes:
- Increasing family support services including the development of a Family Support Hub and ensuring support for families travelling outside of Northern Ireland
- Developing youth services by expanding the programme up to 18 years of age and looking at innovative ways to respond to the needs of young people with heart disease
- Funding & supporting multidisciplinary research into heart disease in children
- Represent heart families to ensure that children are at the centre of all decisions made about the clinical services they require.
At the launch event, which was attended by clinicians, families and children with congenital heart disease, the charity’s Chair Professor Nichola Rooney also said:
“The future provision of health services across all specialties will focus on collaboration and centres of excellence. Children’s heart services are the first to be delivered on such a basis across the island of Ireland and it is vital that more and more children can avail of these services. The Children’s Heartbeat Trust will continue to expand our support for the hospital, children, their families and the work of the wider network to make sure this takes place.”