Having a child or dependent with 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 your child or dependent to lead a healthy lifestyle, and his/her health condition can impact school, college or work.
In this section you can access our online 'digibook', helping 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.
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 a number of types of support available and different services you can access, depending on how much support you need at a given time.
Click HERE to access the interactive document.
The Parent Support digibook contains information on the following areas:
- Admissions
- Post-Discharge & At Home
- Looking After Yourself
- Sibling Support
- Marriage/Partner Support
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.
We hope you find these pages useful and would welcome any feedback on the 'digibooks' to Vanessa.Garratt@uhbw.nhs.uk
A webinar series focussed on well-being for parents of children and young people with heart conditions
Click here for more information on support for babies and children with a congenital heart condition.
Click here for more information on support for young people with a congenital heart condition.
Click here for more information on support for adults with a congenital heart condition.
