Any patient for parent of a paediatric patient can join the Patient and Parent Representative Group (PPRG).
The role of the PPRG member
The role of a PPRG member can vary according to the objectives of the Network and that members skills and availability. You may be asked to:
• meet with other patients or parents to discuss a particular topic.
• talk at a meeting to help other people (public and professional) to understand what it is really like to be a patient or parent in the service.
• be a member of the Network Board where the main business of the Network is decided.
• get involved in projects or visit hospitals in the Network to audit their facilities.
• give feedback on the development of resources.
Where possible the Network will cover any travel expenses that members incur including petrol, parking, train or bus fares.
There are no qualifications required to be a patient or parent representative. The only requirement is that you have had a baby with congenital heart disease within the last five years or you are under active follow-up under the care of the Adult Congenital Heart Team as an adult patient. You must attend one of the 14 clinics within our Network. We expect PPRG members to share views and listen to others in a constructive and respectful way.
What support and training will I receive?
PPRG members work closely with the Network Lead Nurse and Psychologist who will support you and facilitate the discussions. They will be available in person at most meetings and you would have access to their contact details in between meetings. Individual training needs are addressed as appropriate. Members are provided with information about group rules including confidentiality.
For further information please contact:
Jo Quirk: [email protected]
Sara Matley: [email protected]
Network Office: 0113 3926302