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 Header Item Oireachtas (Ministerial and Parliamentary Offices) (Amendment) Bill 2013 [Seanad]: Second Stage (Continued)
 Header Item Estimates for Public Services 2014: Message from Select Sub-Committee
 Header Item Topical Issue Debate
 Header Item Vaccination Programme

Thursday, 23 January 2014

Dáil Éireann Debate
Vol. 827 No. 3

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An Leas-Cheann Comhairle: Information on Michael Kitt Zoom on Michael Kitt Before calling Deputy Mathews, I note that at 4.42 p.m. he will be asked to move the adjournment of the debate.

Deputy Peter Mathews: Information on Peter Mathews Zoom on Peter Mathews I commend Deputies Shortall and Naughten on their clarity and courage of conviction and of truth. There is a feeble attempt at something in this legislation, and while I do not wish to sound dismissive of an attempt in any way, I must be honest and state it is a feeble attempt. I wish to speak in the language I would use with my family, whom I respect, about these matters. This is my mandated and serious family of 166 people. I am not in the business of playing with words, but I am here because I put myself forward as honestly as I could as a candidate for Dáil Éireann. The mode of conveyance was the Fine Gael Party, which I thought still had the remnants of The Just Society and all that went with that, but my experience has been disappointing. I did not seek trouble but was hoping to help mend the mess in this country because of the dark clouds of what one can only describe as occult behaviour that are coming across one's horizons at present in little glimpses. I refer to the Central Remedial Clinic, Rehab and so on, but as Deputy Shortall mentioned them all earlier, I will not go through them. However, it is shockingly disappointing. Were Members serious about reform in the area of this Bill, they would start with a clean slate. They would ask what they wished to do in this regard. Members would note the House has 166 people who are dedicated to parliamentary arrangement and work for the people of Ireland, would note that they need resources and would start from scratch. Instead of this, Members are tinkering with stuff dishonestly under a pretence. Deputy Naughten put in more hour power on the Joint Committee on Health and Children than anyone else. While on the Joint Committee on Finance, Public Expenditure and Reform, I-----

Acting Chairman (Deputy Derek Keating): Information on Derek Keating Zoom on Derek Keating I apologise for disturbing the Deputy, but as it is 4.42 p.m. I must ask him to adjourn.

Deputy Peter Mathews: Information on Peter Mathews Zoom on Peter Mathews I had wished to say one sentence but will move the adjournment.

Debate adjourned.

Estimates for Public Services 2014: Message from Select Sub-Committee

Acting Chairman (Deputy Derek Keating): Information on Derek Keating Zoom on Derek Keating The Select Sub-Committee on Transport, Tourism and Sport has completed its consideration of the following Revised Estimate for public services for the year ending 31 December 2014: Vote 31.

Topical Issue Debate

Vaccination Programme

Deputy John O'Mahony: Information on John O'Mahony Zoom on John O'Mahony 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.

Minister for Health (Deputy James Reilly): Information on Dr. James Reilly Zoom on Dr. James Reilly 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 on their families. I have heard directly from the families and the parents regarding their personal experiences.


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