Seanad debates

Thursday, 2 April 2015

Commencement Matters

Vaccination Programme

10:30 am

Photo of John WhelanJohn Whelan (Labour)
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I welcome the Minister of State to the House; she is representing the Minister for Health, Deputy Varadkar. My request is to ask the Minister for Health to sit down with the parents of the narcolepsy victims, the parents of the children who have contracted this terrible affliction and lifelong disease as a result of a State-sponsored vaccination programme. I cannot understand why the Minister cannot meet them at the earliest opportunity as this situation has been ongoing for five years. It is incumbent on the Minister to sit down with the parents. The support group, SOUND, represents sufferers of unique narcolepsy disorder.They contracted this lifelong affliction and disease which will damage their health and hamper their quality of life for the rest of their lives. It is bad enough that has happened. It is a terrible tragedy. However, it compounds the problem and adds insult to injury to refuse to meet the parents and to live up to our responsibilities and obligations to the children affected, to support them now and for the rest of their lives. I am appalled to report to the House that families have been threatened by elements within the Department and the HSE that if they countenance legal action the meagre supports available to them will be withdrawn. Who is representing that position? It is certainly not our position. Who would dare to do that to a child?

I predict that the State is sleepwalking itself into the nightmare of a queue of protracted High Court legal cases. The parents and children to whom I refer do not want to go to the High Court but the HSE and the Department of Health are now washing their hands of the matter and they have referred it to the State Claims Agency. The latter body never seems to want to discuss a matter and to settle it, it favours litigation. Time and again we have seen children wheeled out on "Six One News" after four or five and up to ten years in court. Instead of supporting children and spending the money to help them and support them in their lives with medical care, education and quality of life, the State would rather pay millions to barristers to drag things out for a decade. Very often by the time the help and compensation comes it is useless and pointless and more damage has been done.

The powers that be must intervene because we cannot have children dragged through the courts unnecessarily. There is no need for that. We administered the vaccine, which was a blanket one rather than a targeted one. We made a second strategic error when the HSE indemnified GlaxoSmithKline from any responsibility, which landed the full burden on taxpayers and the State. The liability has been established beyond dispute. We have a responsibility and a moral obligation to the families affected, instead of dragging children through the courts and running up a bill of tens of millions for taxpayers over years. More than 70 cases have now been filed and the number could reach 100. I am ashamed to say the State has any hand, act or part in this approach and strategy. Why are we going to the State Claims Agency with the matter? There is nothing in dispute. In some instances all the parents and children want is, for example, a medical card so that they do not have to worry about the cost of medical card; education supports and lifelong assistance. This is a lifelong affliction, a burden from which they will never be free. Had they contracted swine flu they would have recovered by now. This was a terrible mistake. We should learn from our mistakes. This is the hepatitis C scandal ready to play out all over again. We should not add to the trauma and distress of the families and children. We all know the terrible burden it would be if it was any of our children. I implore that the Minister for Health, Deputy Leo Varadkar, would meet with the parents support group, SOUND, at the earliest juncture to nip this in the bud and to bring common sense to the situation instead of resorting to the courts.

Photo of Ann PhelanAnn Phelan (Carlow-Kilkenny, Labour)
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I thank Senator Whelan for raising this very important issue. I have constituents who suffer from this condition. Senator Whelan will understand that I am responding on behalf of the Minister for Health, Deputy Leo Varadkar, and I will undertake to pass on the Senator's concerns about meeting the support group. Senator Whelan provides me with an opportunity to update the House on this matter.

The Minister, Deputy Varadkar, has consistently acknowledged the impact narcolepsy has, both physically and emotionally, on the lives of those affected and on their families. He is aware of 73 people with narcolepsy who received the Pandemrix vaccine. They can experience excessive daytime sleepiness; sudden and temporary loss of muscle tone, intense, vivid and sometimes terrifying hallucinations, and sleep paralysis. Dealing day-to-day with this illness affects not just their lives, but also those of their entire family.

Immunisation is a simple, safe and effective way of protecting people against certain diseases. Immunisation against infectious disease has saved more lives than any other public health intervention. In spite of the obvious benefits that come from vaccination there can be serious adverse outcomes for some people. The priority for the Minister for Health, and the priority of the HSE, is that individuals and families affected in an adverse way by vaccinations receive appropriate health care and supports. The Department of Health, the HSE and the Department of Education and Skills have worked together to provide a range of services and supports for people who were diagnosed with narcolepsy after receiving the pandemic vaccine on an ex gratia basis. These services and supports, which are co-ordinated by the HSE national advocacy unit, are intended to provide tailored assistance to address their individual requirements. The HSE regional co-ordinators for narcolepsy liaise with primary care services and hospitals to help narcolepsy patients access the health services they require. Where services are not available in the community, the regional co-ordinators assist narcolepsy patients and their families to identify private service providers. They also liaise with schools and the special education section in the Department of Education and Skills regarding educational assessments and supports.

I understand that the HSE continues to meet with SOUND and recently updated it on the development of a centre of excellence at St. James's Hospital. The centre will include a nurse specialist and dietary service and will facilitate the transition from child to adult services. Legal action has been initiated by 26 families alleging personal injury in which they are claiming the development of narcolepsy resulted from the administration of the Pandemrix vaccine. I am sure Senator Whelan understands that it would be inappropriate for me to comment further on the cases. I wish to again acknowledge the impact on the lives of these people and families affected by narcolepsy and reiterate the Minister for Health's commitment to the ongoing provision of appropriate services and supports.

Photo of John WhelanJohn Whelan (Labour)
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I accept that the Minister of State, Deputy Ann Phelan, is here on behalf of the Minister for Health, whom I also believe to be a sound and fair man. However, the reply is not satisfactory because there is no indication in it whatsoever that the Minister will meet the support group, SOUND. He should do so and his intervention could be very fruitful for the parents and children, their siblings and extended family but also for the State as it could save it the shame and humiliation that would surely be visited upon it for dragging those families through the courts. I read into what was outlined that the HSE is going to earth on the basis that cases have been filed but there is still an opportunity to stop the cases going to court. They do not need to go to court. The 26 cases are only the tip of the iceberg. There will be more. There is no need for the matter to proceed to court if common sense and fairness prevail. What is going on should be stopped now. The only people who will benefit from the legal process are barristers instead of the State looking after the children affected.

Photo of Terry LeydenTerry Leyden (Fianna Fail)
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Senator Whelan has made his point. I understand that the Minister of State is limited in what she can say when she comes to the House on Commencement matters.

Photo of Ann PhelanAnn Phelan (Carlow-Kilkenny, Labour)
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Yes.

Photo of Terry LeydenTerry Leyden (Fianna Fail)
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I presume the Minister of State will continue to pursue the issue.

Sitting suspended at 11.20 a.m. and resumed at noon.