Having a congenital heart condition can often mean dealing with uncertainty, managing symptoms, having to go to hospital a lot and bringing up different feelings, concerns or worries at different times. It can affect families, friendships and relationships. It is especially important for you as a young adult to lead a healthy lifestyle, and your health condition can impact school, college or work. 

Supporting our patients and their loved ones through their congenital heart condition and journey is very important to the Network. On this page you will find information on the range of support available to you. There are different services you can access, depending on how much support you need at a given time.

Our online 'digibook' helps you to find the right support.  A digibook is an interactive document aimed at pointing you towards a large range of approved sources of information on topics that patients and families have told us they would find useful.

The Young People digibook contains information on the following areas: 

  • Hospital Admissions and Managing a Health Condition
  • Emotional Health
  • Families, Relationships & Friendships
  • Lifestyle
  • Work and Eduction

Access this interactive document here 

 Within each topic area, there are three levels of support for you to consider: 

LEVEL ONE SUPPORT IS ABOUT FINDING OUT MORE. 

This section details many online resources that you can access at home, whenever you need to. 

LEVEL TWO SUPPORT IS ABOUT TALKING TO SOMEONE.

This section details a range of local support groups and organisations that you can access if you feel you would like to speak to someone in person or by telephone, about your worries or concerns. 

LEVEL THREE SUPPORT IS SPECIALIST SUPPORT. 

This section details how you can access specialist support through a referral from your Consultant or CNS at University Hospitals Bristol NHS Foundation Trust. 

 

ACHD Youth Workers 

Xander Cook and Monet Williams,  Youth@Heart's Youth Workers,  supports young people aged 15-24 who have congenital heart disease. 

Find out here how Xander and Monet can help

 

 

 

 

 

 

 

 

 

 

 

We hope you find these pages useful and would welcome any feedback on the 'digibooks' to Vanessa.Garratt@uhbw.nhs.uk

Click here for more information on support for babies and children with a congenital heart condition. 

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Click here for more information on support for adults with a congenital heart condition. 

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Click here for more information on support for parents/carers of babies and children with a congenital heart condition. 

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Click here to find out how to get involved in Network activities

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