Advocacy
At Children’s Heartbeat Trust, we are committed to ensuring that the health sector prioritises the needs of children and young people with congenital heart disease (CHD). By advocating for family-focused policies, collaborating with the government, and addressing key issues like waiting lists and access to services, we work to create meaningful change for heart families across Northern Ireland.
The Hidden Costs of Having a Child in Hospital in Northern Ireland
The Hidden Costs of Having a Child in Hospital in Northern Ireland, explores the financial and emotional impacts on families caring for children with prolonged or frequent hospital stays.
Families face hidden costs such as travel, accommodation, food, and parking, alongside loss of earnings. On average, daily food expenses were £38, and overnight accommodation costs were £61 per night. Caregivers often rely on savings, incur debt, or seek financial aid, yet support systems like Disability Living Allowance often involve delays.
75% of caregivers reported strong or extreme mental health impacts, and 50% reported significant physical health challenges. Many caregivers cited a lack of consistent psychological support despite its effectiveness when available.
Families highlighted the importance of access to cooking and hygiene facilities in hospitals, better sleeping arrangements for caregivers, and suitable equipment for children with complex needs.
The report proposes:
- improved hospital amenities
- consistent psychological and financial support
- better communication from medical staff
- flexibility in visiting policies, especially during crises like COVID-19.
The report calls for systemic changes to reduce stress and financial strain, ensuring families are supported holistically during a child’s hospitalisation.
Children’s Heartbeat Trust co-chair’s the Northern Ireland Children’s Health Coalition.
CHT and Children in Hospital Ireland were jointly awarded funding by the Community Foundation’s All-Island Fund to support progression towards a fairer, more equitable society on the island of Ireland.
Our sibling focus group helped to gain insights into how siblings of children with CHD are impacted.
Research
We work in partnerships to establish and fund research to understand and treat heart disease in children.
News and community
Stay connected with everything happening at Children’s Heartbeat Trust—from heart families’ inspiring stories to updates on our programmes and upcoming events.