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.
