John O'Mahony (Mayo, Fine Gael)
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I thank the Ceann Comhairle for allowing me to raise this issue and the Minister for his attendance today. The issue pertains to the difficulties and concerns of families with children who have narcolepsy and the need to provide them with assurances that they will receive the necessary supports as the children grow into adulthood. To put this into context, this arose from the administration of the H1N1 swine flu vaccine Pandemrix a number of years ago. While this affects a small number of children nationwide, their whole lives were turned upside down and they will never be the same again. Within a short time of the vaccine being administered there was a noticeable change in their behaviour, such as falling asleep at school or at home at regular intervals, even though they may have had ten hours' sleep the previous night. In addition, there were mood swings, temper tantrums, facial twitches, drooping eyes, weight gain, slurred speech and many other symptoms. My understanding is this affects approximately 60 families, although the Minister may be able to update that figure. While the confirmation of this illness takes time, it is not expected that there will be a limitless number of cases. In other words, a solution will not be prevented by the potential opening of the floodgates to an enormous number of cases or anything like that. However, it is a life-changing experience for those affected - that is, the children themselves and their entire family.

In fairness, the Minister indicated in April 2012 that a package of supports would be put in place to support the children and families affected, which was both welcomed and necessary. I have met one family involved in particular and the families sought some form of security and certainty that on confirmation of the illness, there would be automatic access to supports by way of discretionary medical cards, educational needs and home tuition. Such supports encompassed several Departments, such as the Department of Social Protection in respect of carer's allowance. In the case of the family with which I dealt, the father gave up his job and now is at home looking after the needs of his son. Difficulties sometimes have occurred in this area on foot of a lack of joined-up thinking between different Departments, such as the Departments of Health, Education and Skills and Social Protection, with regard to different interpretations of what is needed in particular cases and how to get access to it. There also is the issue of the children reaching the age of 18, because people of 18 or 20 need supports in a different context and setting as they move on with their lives.

The most recent issue was triggered last December when, just before Christmas, a number of the families involved received letters stating that certain services were being withdrawn. My understanding is that they were pursuing legal action and the umbrella group that represents them, Sufferers of Unique Narcolepsy Disorder, SOUND, was obliged to appear before the High Court, where those letters were set aside. Effectively, my role today is to highlight this issue and to get certainty for the families who are going through this trauma. While the number affected may be small, it is a huge matter in their lives. I seek final clarity as to what is meant by the setting aside of those letters. Does it mean they could be reinstated at a later stage? One can imagine the fear and anxiety caused by the receipt of such a letter and I ask that this be clarified today. In addition, I seek clarity on what supports are in place for the families and whether they still will be available after the children reach the age of 18.

James Reilly (Dublin North, Fine Gael)
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I thank Deputy O'Mahony for raising this sensitive Topical Issue, as it provides me with an opportunity to update the House on this matter. First, I acknowledge the impact of this on those diagnosed with narcolepsy following administration of Pandemrix influenza vaccine, as well as the impact it has had their families. I have heard directly from the families and the parents regarding their personal experiences.

I note with optimism that the earliest indications from scientific and medical research into this condition suggest that the prognosis for children may be better than previously indicated and that they should be able, with appropriate medication and supports, to reach their potential. It is important that these children continue to receive effective treatment and supports. Second, I commend the dedication and commitment of the officials in the HSE advocacy unit and the regional co-ordinators in providing those affected and their families with tailored services and supports to address their specific individual needs.

As Deputies are aware, a number of families have recently initiated legal action alleging personal injury in which they are claiming the development of narcolepsy resulted from the administration of the pandemic vaccine. It is inappropriate for me to comment further on these cases, but I support their absolute right to do so. Following the receipt of letters from solicitors representing a number of individuals indicating their intention to initiate legal proceedings, legal advices were obtained by my Department. The advices obtained recommended delegation of the management of these cases and, any subsequent similar cases, to the State Claims Agency. I approved this course of action in June 2013.

A Government decision was required to give effect to this approach. The Government decision was obtained in October and allowed the Taoiseach to sign the National Treasury Management Agency (Delegation of Claims Management Functions)(Amendment) Order 2013 on 15 October. The management of the cases was transferred to the State Claims Agency upon the order coming into effect.

Public and media confusion around the provision of health services and supports, including the provision of discretionary medical cards, arose from communications by the HSE. The HSE has apologised for any distress or upset caused and has clarified the situation with the families involved. I understand that regarding individuals who have initiated legal proceedings, the HSE has advised that all expenses associated with narcolepsy will continue to be reimbursed on an ex gratiabasis until the litigation process is finalised. My priority, and that of the Government and the HSE, has been always to ensure that individuals affected by narcolepsy following pandemic vaccination receive the health care and support they specifically need, regardless of whether they choose to take legal action.

John O'Mahony (Mayo, Fine Gael)
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I thank the Minister for clarifying that there will be no disadvantage to any of children of families that take legal action. That is very necessary and welcome. The family that came to me about this has no wish to go the legal route but does wish to get absolute clarity and supports that will be continued right after the child grows to adulthood. Will the Minister address the issue of supports for over-18 year olds and adults? A few days ago the family in question received a letter stating their medical card is being reviewed. I know about the medical card review process but it increases the fears for families.

It is a limited number of people but their lives have been turned upside down and will continue to be so in the future. The main message is security and certainty into the future. The issues that have arisen seemed to have been solved a couple of years ago with the package the Minister announced but, from the recent letters that have been sent out, that does not seem to be the case. While the media may have misinterpreted it, it is important that there be clarity and joined-up thinking between the Departments, and security and certainty for the families.

James Reilly (Dublin North, Fine Gael)
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Technically there is no such thing as a discretionary medical card but it has come into common parlance because of full medical cards that were given to people who did not meet the criteria but where discretion was used because of the particular hardships they faced. The whole scheme is based on financial hardship, as the Act states. I have no wish as Minister for Health to be involved in any situation which makes life more difficult for those who have suffered as a consequence of vaccinations that were produced, administered and received in good faith. I have discussed with the chief medical officer the need for a no-fault compensation scheme to be put in place, particularly for the victims of vaccine damage. It is through no fault of their own and they are contributing to the common good by allowing themselves to be vaccinated. This protects not just themselves but others in the community who may not be able to avail of a vaccine, but who will not be faced with exposure to a particular disease because it has been nearly eradicated.

Staged payments is an important issue because in this situation the original prognosis for this condition has improved and should continue to improve over the years. However, Deputy O'Mahony's very genuine and legitimate concern on behalf of those parents is what will happen to those children when they pass 18 years of age if they are still seriously impeded as a consequence of this condition. We will continue to support them in every way we can. Even though they be over the age of 18 or 25 they may very likely still have educational requirements. We must support them in that. There has been great co-operation between me and the Minister for Education and Skills in providing a broad range of supports and services. They should remain in place for as long as they are required as well as any other facilities made available to those who have suffered as a consequence of the vaccine.