About us
Youth at Heart are a charity, set up to empower, inform and support teenagers and young adults aged 13-24, and their families, living with congenital heart disease (CHD) across South West England and South Wales.
Through our CHD Health Youth Worker Team, we offer face to face and online support. As independent advocates we listen to your stories, we enable your voice to be heard and for you to make informed choices. We recognise, and facilitate help, for the many challenges faced, we empower you to access opportunities and we walk alongside you on your journey.
Our Why?
Youth at Heart was set up in May 2014 in memory of Alice who was born with complex CHD.
Never defined by her illness, once her medical team started to talk to her about Transition and Transfer to Adult Cardiac Service, Alice realised that this step was huge. She wanted the face to face opportunity to talk to a trusted, independent person about her health, choices and opportunities.
More than anything, Alice also wanted to help other young people living with CHD. Her ambition was to make a positive difference to their live, and help find solutions to the many challenges she knew only too well, that they faced.
Following her death, Alice’s family spoke to the clinical team at the Bristol Heart Institute about what they could do. Clinicians advised funding an independent health based Youth Worker post. Youth at Heart was born and proudly realises Alice’s legacy on a daily basis.
1 in 100 babies are born with congenital heart disease.
Every 2 hours a baby is born with a serious heart condition.
90% of those born with CHD go on to thrive into adulthood.
10 Years of Youth at Heart
Join us in our 10th Anniversary Year of Youth at Heart and making a difference to the lives of young people (aged 13-24) with Congenital Heart Disease (CHD) and their families.
Although independent from the NHS, Youth at Heart works in partnership with the Bristol Heart Institute, Bristol Royal Hospital for Children and the South Wales and South West Congenital Heart Disease Network, holding an ‘honorary’ contract for our Youth Workers.
This enables our Youth Workers to have access to the Bristol Heart Institute and Children’s hospital wards where they are based, as well as hospitals and clinics across the region.
Our Youth Workers attend clinical team meetings for CHD, with Consultants and Clinical Nurse Specialists inviting our Youth Workers to transition and young people clinics across the region. We have visited Taunton, Cardiff, Bridgend, Pontypool, Torbay and Tonypandy so far.
Meet the team
Hello, Xander here. I’m the Senior Congenital Heart Disease Health Youth Worker. I have been in post for over 4 years now, building relationships with the clinical teams across the region, meeting young people and families, attending clinics, seeing inpatients, talking at and attending study days. There is A LOT to learn in the world of CHD and every young person and family have a different journey, story and lived experience. When I am not working for Youth at Heart I am usually unwinding with my two cats Astra and Tache, watching TV shows with my wife or playing the PS5.
It’s great that S feels so relaxed and comfortable talking to you. This will make things easier for her as she progresses through her late teens and early twenties. Interesting times for sure!
It’s reassuring for me too, knowing that she has you as a contact and someone she can go to in confidence with any questions or worries she may have."
LP, Parent
Explore Youth at Heart
Youth at Heart are a charity committed to young people aged 13-24, and their families, who are living with Congenital Heart Disease (CHD) in South West England and South Wales.
We empower, inform and support them to live life to its full potential.
For young people
We are committed to supporting you as you start your Transition Journey aged 13 and leading up to your Transfer from Paediatrics to Adult Services and beyond, until your 25th birthday.
For the whole family
Youth at Heart recognise that congenital heart disease affects the whole family, which is why our Youth Workers are there for families too.
For professionals
Youth at Heart is a charity independent from the NHS that works in partnership with health professionals across the South Wales & South West Congenital Heart Disease Network.
Get involved
Youth at Heart rely on funds being raised through donations, grants, events and activities and for people to get involved to help us carry on our important work.