Patient & Family Engagement Group

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.

Please get in touch on nuth.enquiries-nencchdn@nhs.net if you would like to contribute to the future development of the network, we can’t wait to have you on board!

The following key themes were highlighted from initial discussions:

• Transition
• Research
• True engagement with patients
• Building a patient and family engagement database
• Care closer to home 
• Communication