A Banbridge family say a report recommending the creation of a family advisory group during the establishment of an all-Ireland children’s heart surgery centre in Dublin, must be adhered to.
Northern Ireland’s health minister Jim Wells last week backed the move which means surgery in Belfast’s Royal Victoria Hospital will cease.
The International Working Group’s (IWG) recommendation that creating a family advisory group t is very important to heMcKee family from Maryville.
Judith and Aron Mckee whose youngest daughter Grace, three, was born with Pulmonary Atresia with a VSD, a heart condition which means that blood cannot get from the right ventricle of her heart into her lungs, have experienced the system on both sides of the border.
They say the most important thing to sort out before the new service starts is practical support for people who are already under an “awful lot of pressure”.
Judith explained: “We are saddened and disappointed but we have come to terms that the services are just not sustainable in Belfast and there is no issue on the qaulity of care in Dublin but Dublin isn’t ready and it will be 18 months before they can treat all the children from here and Belfast is set to close in April so this leaves 12 months.
“There needs to be a clear care pathway for each child in that time.”
Judith added: “Parental input is vital during the establishment of the all-Ireland surgery centre and will be a great benefit as while the charities and hospitals are fantastic unless you are libving this you can’t totally understand.”
Meanwhile DUP MP David Simpson led a delegation from to meet the Minister of Health Jim Wells concerning the ongoing decision making around Children’s Heart Surgery. Upper Bann families Judith and Aron McKee along with Julie Greenfield attended the meeting in Parliament Buildings with the Minister at the request of Mr Simpson.
Speaking following the one hour session with Minister Wells, Mr Simpson said, “it is heart wrenching to hear the real life experience of these local families and how their children Grace McKee and Lewis Greenaway have been affected by congenital heart disease. This was an opportunity for the families to relay their experiences in a very practical way to the Minister and it was a pleasure to have baby Grace there also.
“Given the very serious decisions that will be made concerning Congenital Heart Surgery in the coming months we felt it was an opportune time to speak with the Minister and stress the need for a high quality service with the needs of the child and family right at the very core of the design of the new service.”
“We also discussed the possibility of the introduction of pulse proximity testing at birth to ascertain at a very early stage as to whether or not a heart condition was evident. The Minister give a clear undertaking that he would investigate this matter and look at the practicalities of introducing such a test.
“As we approach decision time concerning of the current service and how it will change I remain committed to the children and families in seeing a service that is the very best in its field and has the children and family needs right at the very heart of it.”