Patients and families remain at the heart of our network and your opinions and ideas for the future of the service and how it is delivered is key to success and longevity of the network.
This public voice group participates in discussions, critiques relevant information and documentation and champions the voice of service users across the North East and North Cumbria Congenital Heart Disease Network (NENC-CHDN). It provides a balanced view of Congenital Heart Disease (CHD) services, both positive and negativ
Everyone who uses the service or may do so in the future can join the group: Patients, families, carers etc. We aim to have representation from a variety of subgroups across the patient population.
Your views should inform service development, this helps us get services right for patients and supports continuous improvement across the North East and North Cumbria. We recognise and value the contribution of those who use the CHD services in shaping the future health care provision in our region across the organisations.
Participation can take place in a variety of ways: Email surveys, social media, forums, working groups, group meetings, board meetings and national meetings.
See our events page for upcoming meetings and working group sessions.
The following key themes were highlighted from initial discussions:
Every parent worries when our little ones are not well. But help is at hand! Find out more by clicking the button below and download your own copy of The Little Orange Book.
Find out about the experience of having a child with congenital heart disease by seeing and hearing people share their personal stories on film. In partnership with the British Heart Foundation, researchers travelled all around the UK to talk to the parents of 30 children in their own homes. Find out what people said about issues such as diagnosis, talking to your child, surgery and impact on family.
What is important to you?
What is important to you when transitioning from paediatric to adult CHD services?