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May 30th, 2018
Patient & Parent Representatives
The Congenital Heart Disease Network covers a large geographical area throughout Yorkshire, Humber and North Derbyshire. It provides care for children and adults with congenital heart disease. Leeds General Infirmary is the specialist Centre and works closely with 17 other hospitals throughout the Network.
The main aim of the Network is to support the delivery of the highest quality care for our patients and to ensure that as much care and treatment is provided as close to home as possible. We want to ensure that patients have access to the very best care regardless of where they live, that the voices of patients and families are well heard and that we are always focused on improving services for patients.
We are really keen for patient and parent representatives to work with us and advise us as we develop the Network.
What is a patient/parent representative?
A patient/parent representative is someone who acts to represent the views of patients with congenital heart disease or parents who have a child with congenital heart disease, to ensure that their voices are placed at the heart of decision making and their interests are always put first.
What will my role be?
The role of the patient/parent representative 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
• join, and contribute to topic discussions via email/whatsapp groups
• 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..
You may have ideas about projects that would be useful to do look at.
How much time will it take?
This will vary depending on your availability and how many patient/parent representatives are involved in this group. If you sit on the Network Board you will be asked to commit to 4 Board meetings per year and these are likely to be held at different venues across Yorkshire and the Humber.
We are fully aware that this is a voluntary role and hope that we can bring together a group of patients and parents who can work together, share views and jointly contribute to project work. We would ask for a 12-month commitment but hope that working in a group would mean tasks would be shared between individuals
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?
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 or you are under the active care of the adult congenital heart team as an adult patient.
What support and training would I receive?
You would work closely with the Lead Nurse and Psychologist who work in the Network. 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.
How can I apply?
We are currently looking for patient and parent representatives for the Congenital Heart Disease Network.
If you are interested in joining this group, or you would like more information please contact one of the following members of the Network Team by June 20th 2018. We are planning to hold a meeting of people interested in becoming involved in July.
Jo Quirk, Lead Nurse Tel 0113 3926288
Sara Matley, Clinical Psychologist