Youth@Heart is a Charity based in Gloucestershire who has supported hundreds of young people and families across the South West with Congenital Heart Disease (CHD). This is important as 1 in 100 babies are born with CHD, that’s 1 baby every 2 hours in the UK affected by CHD – now with medical advancements and medical support, over 85% of those with CHD are living into adulthood. Yet, there is very little support for young people growing up with and living with Congenital Heart Disease.
The Charity was one of the first in the UK to recruit a specialist ‘Adult Congenital Heart Disease’ ACHD Youth Worker and Community CHD Youth Worker. The Charity supports young people in hospital and in the community, now reaching over 1000 points of contact with those it supports across the South West. Transitioning from children to adult services within hospital can be scary, daunting and feel isolating – from the medical terminology to having to deal with sometimes hard, life changing news and for families who are supporting their children. Young people with CHD just want to carry on with their lives but sometimes simple tasks can be so hard, having support from our youth workers can really help those facing some of the toughest points of their lives. We don’t want young people with Congenital Heart Disease to feel alone, we want them to reach out, feel connected and gain the support they need. Please do get in touch if you need our support email@example.com
The Charity was set up in memory of Alice who sadly lost her battle with CHD aged 22. Alice wanted other young people to have the support she felt she didn’t get when growing up particularly with help to cope with some of the challenges that she faced transitioning from children to adult services, with what is very much a hidden disability. We are delighted to be realising Alice’s dream and helping those who need us, when it matters most.
The Charity recruited its first ACHD Youth Worker 2 years ago, partnering with Bristol Heart Institute (BHI) and the South West and South Wales Congenital Heart Disease Network – to help provide support to young people and families. We are proud to be able to work on the ward at the hospital and provide professional support, friendship and mentoring to young people who would benefit from Youth@Heart’s help. We now have 2 Youth Workers, one on the wards and the other in the community, this funding from The National Lottery will really help us keep this support going and make a real difference to the hundreds of young people with CHD.
Lucinda Field said ‘We are overwhelmed to receive this incredible grant, and know from personal experience, the positive difference it will make to young people, and their families, living with the enormous challenge that is CHD.’
Charity no: 1158249