Information from Family Engagement Group

| 25th January, 2016

All-island Congenital Heart Disease (CHD) Network

Family Engagement Group

Update from the Family Engagement Group

In October 2014 the Minister of Health in Northern Ireland and the Minister of Health in the Republic of Ireland made a joint policy statement agreeing that children’s paediatric cardiology services should be delivered across an all island CHD network.   This agreement was reached following a report from an International Working Group chaired by Dr John Mayer from the Boston Children’s Hospital which set out fourteen recommendations on the development of this single congenital cardiac service. You can read the report hereinfo icon

Recommendation 2 was the establishment of a ‘Family Advisory Group with representation from both jurisdictions that will meet at least quarterly that will include clinical nurse specialists and other family support staff to provide direct input for the Governance Committee’.

From this, the Network Board set up a Family Engagement Group to engage with and represent children and young people with heart disease and their families within the all island CHD network.  The Co-Chairs of this group also sit on the Network Board and are Sarah Quinlan from Children’s Heartbeat Trust and Margaret Rogers from Heart Children Ireland.

Simply put, the Family Engagement Group is here to ensure that heart families are at the centre of any decisions or processes put in place during the development of the network.

Sitting on this group are;

Cardiac Nurse Specialists from Clark Clinic at the Royal Belfast Hospital for Sick Children (RBHSC) & Our Lady’s Children’s Hospital in Crumlin (OLCHC).

Clinical Psychologists from RBHSC and OLCHC

Family representatives from 3 charities;

Children’s Heartbeat Trust     – [email protected]    028 9031 2228

Heart Children Ireland        – [email protected]            (00 353 1) 8740990         

Heartbeat NI – [email protected]           078 0137 0297

There will also be a number of sub-groups developed to make sure that we are hearing from as many patients and families as possible – Family Focus groups, Young Person’s group etc.

Communication and information will be the key focus of this group – both communicating developments and practical information about the network to families and facilitating feedback, experiences and recommendations concerning the service to those delivering it.

By spring 2016 we hope to have a Network Board website and social media in place to allow for a streamlined central source of information for families across the island. We will also be putting in place the initial stages for engagement and feedback mechanism.

Whilst this is being developed we would encourage any families with thoughts, ideas or feedback about the all-island network services to get in touch with your clinical nurse specialist or any of the three charities noted above.

Family Engagement Group


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