For Families

Youth at Heart recognise that Congenital Heart Disease affects the whole family, which is why our Youth Workers are there for families too.

Trip to the Aquarium

We are here if you:

  • Need some non-clinical advice or signposting
  • Want someone to chat to outside of the family
  • Would like a tour of BHI

Whilst your child/young person is in hospital we can visit so you can go off for a well earned break or just a coffee whilst we chat and play games to distract from the institutionalisation of hospital.

We are here to support siblings as much as we are young people with CHD and their parents. CHD affects every member of the family and in different ways. Our team understand that being a sibling of a young person with CHD can be challenging and frightening. We are here to chat, listen to you, and signpost you to any support/advice that may help.

Support can be given as a whole family:

  • In the hospital
  • Home visits and support in the community for all the family
  • Independent Advocacy and active listening.
  • Support with difficult conversations within the family, and understanding of the different types of CHD
  • Facilitation of/referral to, other charities and organisations for whole family fun activities. Positive experiences to build memories and escape from the daily challenges
Bristol Royal Hospital for Children
"As a mother to a child born with multiple & significant health issues, from a very early age we were introduced to family friendly support groups & these were an absolute lifeline - but this is the 1st time we’ve truly encountered a group “just for the likes of my son” - something for him, with others that: only “they” know how it truly feels to walk in at times lonely & worrying shoes. Young adults can often be forgotten - but here, with Youth at Heart there is a very special & safe place for them to go & confide in, seek help & advice, be listened to & share experiences.

It is absolutely crucial that now these services have been established that funding is sourced or made available in order for them to grow."

JL, 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 their best life.

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 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.

Our feedback

"Thank you so much for coming to see me it meant a lot. I’ve been super lonely, and it was nice having someone in that wasn’t here to poke or prod me or ask me questions about my condition."

PB, Young Person

"Thank you so much for your support with J when you came to see him in hospital, it was more help than you can know for both J and myself"

VC, Parent

"Thank you for all the support you have given me over the last few years you've helped me massively and i cannot thank you enough for everything, i'll miss you guys but i will keep you updated on my progression with uni"

GC, Young Person

"Hey, I just wanted to say thank you so much for coming to my appointment. It was really nice and useful having you there. Thank you"

SL, Young Person

"Youth at Heart are experts in what they do, what they can offer and it’s not just about supporting the patient - it’s supporting the family and seeing everyone for who they are not just a diagnosis or procedure"

FW, Parent

"Better understanding of youth culture and skills which enable sharing in a less formal and threatening interaction. The Youth Workers teach us medics/nurses what is cool!"

Consultant Cardiologist