Dáil debates

Tuesday, 4 July 2017

Topical Issue Debate

Treatment Abroad Scheme

6:25 pm

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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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?

Photo of Finian McGrathFinian McGrath (Dublin Bay North, Independent)
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I thank the Deputy for raising this important matter. I know that she has a good record on health and disability issues. It gives me the opportunity to inform the House on air ambulance services and the supports available to families of children receiving medical treatment abroad.

The United Kingdom and Ireland share a common organ pool base. When donor organs become available, they are submitted to the common pool for transplant to the most appropriate patient on the waiting list. The United Kingdom provides paediatric transplant services on behalf of Ireland and they are organised through the treatment abroad scheme. In 2016 nine paediatric liver transplant and eight cardiac patients were treated under the scheme.

Responsibility for the co-ordination of transport logistics for paediatric transplant transfers rests with the National Ambulance Service, NAS.

The NAS uses three providers for these transfers: the Irish Air Corps, the Irish Coast Guard and private air ambulance companies. The NAS prepares an individualised transport logistics plan for each patient and keeps the plan updated. This logistics plan takes into account the patient's location, medical requirements and the time window available in which to complete the transport. The timeframe to transfer a liver patient is six hours, whereas a shorter timeframe of four hours is available for cardiac transplant patients.

As the Deputy will be aware, the Air Corps is currently experiencing manpower challenges and has been unable to sustain the level of service previously provided for the transfer of priority paediatric transplant patients. While there is significant work under way in the Department of Defence to increase the capacity of the Air Corps, this reduction in the availability of the Air Corps resource is problematic. I accept the Deputy's point in this regard. I can assure the Deputy that the NAS has taken every step possible to ensure that contingency arrangements are in place in light of the reduced Air Corps availability. In that regard, the NAS is working closely with the Irish Coast Guard and private providers in an effort to mitigate the risks associated with the transport of patients. However, the NAS medical director is of the view that, given the current difficulties, all cardiac transplant patients should relocate to the UK in order to guarantee access to transplant surgery. He has also recommended that decisions regarding the relocation of liver transplant patients be made on a case-by-case basis, considering the location of the child. I understand the decision to relocate is a very difficult one for any family, not least the family of a sick child. Given the exceptional circumstances with regard to air ambulance transfers, the Minister, Deputy Harris, has asked the HSE, through the treatment abroad scheme, to make a financial contribution to families who are advised to and who choose to relocate.

In the meantime, I understand that every effort is being made to address the shortages in personnel faced by the Air Corps, and a plan is in place to allow it to return to full strength. The Deputy may wish to note that following a recent notification from the Irish Coast Guard of reduced availability for inter-hospital transfer services due to scheduled fleet maintenance, the Air Corps rosters were changed at very short notice to provide additional cover, in case an organ became available for a transplant patient. This arrangement, at very short notice, illustrates the strong interdepartmental co-operation evident in the provision of the air ambulance services.

6:35 pm

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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I thank the Minister of State for his positive response, which was very welcome. From what I hear, funds will be made available to families through the treatment abroad fund. The cardiac cases are approved but the liver patient decisions will be made on a case-by-case basis, depending on the location of the patient. Will there be two different approaches for those in the west and in Louth?

Both liver and heart conditions are very serious. Regardless of whether a heart or liver is to be transplanted, the child has to get from Ireland to England. Regrettably, air transport is currently provided only between 9 a.m. and 5 p.m. and there is no weekend service. The Minister of State reassured me there is a private air ambulance company employed. I am sure he can guarantee me it is available 24/7, when requested. When Crumlin hospital states a liver or heart is available in the United Kingdom for a child, are we in a position to provide the transport and meet all the standards of delivery, even if the child is living at home? Many of the liver patients are in the home setting and do not need to be in hospital at all. One can totally understand the concerns of the families. They are very concerned over the fact the air ambulance service is not the service that existed last June or July and they are concerned given what came to light last January. The families need to know they have support, including financial support. It is a huge commitment to uproot a parent and child and leave half a family behind. Some people must walk away from their job to do what is necessary until such time as we have a full air ambulance service again.

Photo of Finian McGrathFinian McGrath (Dublin Bay North, Independent)
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Of course I understand the dilemma of the families, in particular those dealing with liver disease. They are very worried. I accept the Deputy's point that they need clarity. On the funds, the assessment and the point the Deputy made about Galway and Louth, I will raise the matter with the Minister, Deputy Harris, because we need total clarity on this issue to reassure the families.

May I make four other points that are important for families to know? First, where a family is experiencing undue hardship, it may, of course, apply to the Department of Social Protection for an exceptional needs payment. It is understood that, in general, exceptional needs payments are approved when the applicant is already in receipt of some sort of income support. Second, owing to the air ambulance difficulties, we have asked the HSE to provide financial assistance to the families required to relocate. It is a difficult situation. Where a child is in hospital and the hospital cannot provide accommodation for a parent, or where the child is not hospitalised, the family will be offered a subsistence payment of €169.22 per night per family.

Third, while the financial contribution is generally directed at the families of cardiac patients, the HSE has also been directed to consider the requests for financial assistance for the liver transplant patients, and this is very important. Fourth, the Irish Coast Guard provides capacity for the inter-hospital transfers on an as-available basis from Dublin, Waterford, Shannon and Sligo. This is where the private providers come it. They are used regularly to supplement both emergency transfer patients, who are a priority, and scheduled transfer patients. The HSE acute hospital division has identified a comprehensive list of private air ambulance providers. This is updated continuously. The Deputy can reassure the families that lists of reliable people have been drawn up and that the service is being given.

I will bring the other concerns raised by Deputy Rabbitte back to the Minister, Deputy Harris, to obtain further clarity.