Anne Rabbitte (Galway East, Fianna Fail) | Oireachtas source

I thank the Minister of State, Deputy Finian McGrath, for taking my Topical Issue matter. Fianna Fáil has been contacted by Children’s Liver Disease Ireland, a voluntary organisation the aim of which is to support families who have a child with liver disease. It is a small group as liver disease in children is uncommon. Nonetheless, for those affected, it is a serious issue for them and their families. Children have to travel to the United Kingdom for treatment for serious liver disease, with liver transplantation and Kasai procedures the main treatments. All families know the worries that go with the transplantation process, but they have been compounded by other factors recently.

In early January staff shortages in the Air Corps resulted in serious pressure being exerted on the ability of combined services that compromised emergency medical transport services. The impact of this pressure means that, despite a professional and dedicated team, the air ambulance service cannot guarantee that a child will be transported to the United Kingdom in the six-hour window period allowed for the donor of a liver. Parents of children affected had this explained to them and, understandably, some of them have taken the decision to move to London while their child awaits a transplant. Children’s Liver Disease Ireland believes the Health Service Executive, HSE, has made decisions about the air ambulance service which will impact on children's plans. It does not believe a reliable service will be available to children awaiting a transplant for many months. One mother who lived through having a child on a transplant list told us how she knew how those who did faced many dilemmas and risk factors. It is not unreasonable that the system should represent their decision about a risky transport system as their opinions are respected in medical decisions about their children.

Obviously, the cost of living in a different city, as well as absence from work and home, are significant. A child can be on a transplant list for many months, even up to a year, but may not require hospitalisation. I understand the Department of Health has instructed the HSE to provide these families with financial support on a case by case basis. However, I understand the families which have moved to London have been informed that they do not meet the criteria for the provision of this financial support. I also understand that initially all liver transplant children were told that they did not meet the criteria. Following queries to Our Lady’s Children Hospital, Crumlin, some but not all liver transplant children were granted financial support. There was no explanation given of the criteria used. The families need clarity at this stressful time. Will the Minister of State respond to the questions I have raised?

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