Our patient and parent reference group

  • Parent & Patient Reference Group

    What is the parent and patient representative group (PPRG)?
    A group of patient and parent representatives who inform and ask the views of patients with congenital heart disease or parents who have a child with congenital heart disease, to ensure that their voices are central to decision making.

    What will my role be?
    The role of the PPRG member can vary according to the objectives of the Network and your own 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 ( both public and professionals ) 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 a project or visit hospitals in the Network to audit their facilities.
    • give feedback on the development of information and resources
    We welcome your own ideas about important changes to the services. You yourself may have ideas about projects that would be useful to do.

    How often will we meet?
    This will vary depending on your availability and the different projects we are working on. The Network Board meet 4 times a year and we ask that one person attends from the group. It currently runs virtually due to the pandemic.
    We have a What’s App group, which allows us to keep in touch and share ideas.
    We are fully aware that this is a voluntary role and hope that we can bring together a group of people who can communicate between each other, share views and opinions in a constructive respectful way.

    Will it cost me anything?
    Where possible the Congenital Heart Disease Network will cover any travel expenses that you incur. This should include petrol, parking, train or bus fares.
    Do I need any qualifications to join the group?
    No, there are no qualifications to be a patient or parent representative. The only requirement is that you have had a baby with congenital heart disease within the last 5 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.

    What support and training will I receive?
    You would work closely with the Lead Nurse and Psychologist who work in the Network, who will support you and facilitate the discussions. They will be available in person at most meetings and you would have access to their email and work telephone number. We would address any individual training needs as appropriate.
    We will provide you with some written information about the group rules, including confidentiality and any formal meetings you are required to attend such as the Board meetings.

    For further information please contact:
    Office: 0113 3926302

    Jo Quirk, Lead Nurse for the Network

    Sara Matley, Lead Psychologist