Michael D'Arcy (Wexford, Fine Gael)
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Narcolepsy was described to me by somebody whose family has been affected by it as being asleep when one should be awake and awake when one should be asleep. It is a naturally occurring ailment, but many people are affected by it because of a vaccination programme, specifically the use of a product called Pandemrix. The Pandemrix vaccine was intended to treat the H1N1 virus, or swine flu. However, some people's lives have been impacted significantly by this product, which was approved by the HSE. Nobody has ever been held accountable for the use of the vaccine. There were questions as to its suitability at the time. I feel aggrieved that a number of people's lives have been turned upside down as a result of an approved vaccination programme despite the questions raised about the product. Nobody has been held responsible. Nobody was found to have approved the product, despite the serious questions raised. The Department of Health has linked narcolepsy to Pandemrix. This has affected 80 people in Ireland, and their lives, as I said, were turned completely upside down.

There is a treatment service but it is in Temple Street Children's University Hospital and therefore only available to children. However, a number of adults are affected. They are on their own. This is not sufficient. According to information I was given, there was to be a funding stream of €1.6 million or €1.7 million to establish a national service for narcolepsy, not just for those affected by Pandemrix. It was to be based in St. James's Hospital, it was to be a centre of excellence and there was to be access to a multidisciplinary team and to professionals and specialists in narcolepsy. The hope and expectation was that they would develop a knowledge of the condition in Ireland but that the knowledge, the information and the accrual of the information would be available not only here, but also in other areas around the world. I was told that the funding stream was cut. I look forward to the Minister of State's reply. I certainly hope it was not cut, in particular for people who were given Pandemrix, a State-sponsored vaccination product. Where the State is liable for a programme, the State should not cut it. If it has been cut, it should not have been cut. If it has not been cut, I welcome that.

Finian McGrath (Dublin Bay North, Independent)
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I thank Deputy Michael D'Arcy for raising this very important issue and for allowing me the opportunity to give an update to the House on the matter. I acknowledge the impact of narcolepsy on all people who have been diagnosed with it. In particular, I am aware of a specific group of individuals who claim to have developed narcolepsy as a result of receiving pandemic vaccine during the 2009 influenza pandemic. Many among this group were children at the time of their diagnosis.

As Deputies are aware, immunisation is a simple, safe and effective way of protecting children against certain diseases. It has saved more lives than any other public health intervention, apart from the provision of clean water. In spite of the obvious benefits that have come from vaccination, I must also acknowledge that there have been adverse outcomes for a very small number of people arising out of vaccination.

The priority of the Department of Health and the HSE is that the individuals and families affected receive appropriate health and social care supports. Therefore, my Department has engaged with the HSE, the Department of Education and Skills and the Department of Social Protection to ensure the provision of a range of services and supports on an ex gratiabasis.

The HSE's advocacy unit acts as liaison with other service providers and Government Departments to facilitate access to the required services. It is in regular contact with individuals affected. Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services.

The ex gratiahealth supports include: clinical care pathways to ensure access to rapid diagnosis and treatment; multidisciplinary assessments led by clinical experts; counselling services for both the individuals and their families; discretionary medical cards for those who have been diagnosed, which have been provided to allow unlimited access to general practitioner care and any prescribed medication; ex gratiareimbursement of vouched expenses incurred in the process of diagnosis and treatment, including travel expenses for attending medical appointments; and physiotherapy, occupational therapy assessments, dental assessments and dietary services, all on a needs basis.

Every possible measure is in place to ensure rapid diagnostic services. Consultants in sleep medicine from the Mater Private Hospital and the Children's University Hospital, Temple Street, have been involved in the diagnosis and treatment of many of the narcolepsy patients. As many of the patients are now becoming adults, work is under way to set up a centre of excellence for narcolepsy based at St. James's Hospital which will include the following services: a nurse specialist, dietary service, psychological service and a full service between St. James's Hospital and the children's hospitals.

It is acknowledged that treatment and individual medical needs may need to be reassessed over time. Consequently, the services and supports provided are reassessed on an ongoing basis to take account of any changes in the individuals' conditions and circumstances.

Finally, I acknowledge the impact on the lives of those people and families affected by narcolepsy and reiterate our commitment to the ongoing provision of appropriate services and supports.

Michael D'Arcy (Wexford, Fine Gael)
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I ask the Minister of State to correct the record of the House. In his response he said, "In particular, I am aware of a specific group of individuals who claim to have developed narcolepsy as a result of receiving pandemic vaccine during the 2009 influenza pandemic." They do not claim this; it happened to them as a result of the use of the vaccine. Will the Minister of State take the opportunity to correct this? He subsequently said, "I must also acknowledge that there have been adverse outcomes for a very small number of people arising out of vaccination." Whether the Minister of State read his speaking note beforehand or not I do not know, but these statements do not tally. I ask him to correct the record of the House.

I asked a very specific question of the Minister of State.

Is the €1.6 million funding stream available in the HSE 2017 service plan or not? The Minister of State spoke about many things, some of which were good and welcome. I want to know whether that specific sum of money is in the service plan. The Minister of State is unable to answer the question but it could not be clearer. The answer is not on the pages of script supplied to the Minister of State. Perhaps he has the answer in follow-up notes. I hope so. If not, the Minister of State has come to the House unprepared in a way that is insulting. The question is clear. Is the €1.6 million funding available for the development of a narcolepsy centre in St. James's Hospital in the 2017 service plan?

Finian McGrath (Dublin Bay North, Independent)
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I wish to remind the Deputy that I am representing the Minister for Health, Deputy Harris, who could not attend because he has a Cabinet meeting.

Michael D'Arcy (Wexford, Fine Gael)
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The Minister of State is representing himself.

Finian McGrath (Dublin Bay North, Independent)
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I am representing the Minister and I will respond accordingly. I will respond to the particular issues. As of 9 December 2016, legal proceedings against the Minister for Health, the Health Service Executive and GlaxoSmithKline Biological have been initiated by 51 individuals. The plaintiffs allege personal injury and claim the development of narcolepsy resulted from the administration of the H1N1 pandemic vaccine. Legal advice obtained by the Department recommended delegation of the management of these cases and any subsequent similar cases to the State Claims Agency. A Government decision to give effect to this approach was obtained in October and allowed the Taoiseach to refer the matter to the National Treasury Management Agency on 15 October. The management of these cases has been transferred to the State Claims Agency.

The funding issue is important. Total payments in 2015 amounted to €55,189.32. The average payment made was €551.89. The largest single payment made was €7,488, which was for college accommodation expenses. Other expenses being reimbursed include expenses for GP visits, hospital charges, prescription charges and, prior to a medical card being issues based on the diagnosis of narcolepsy, consultant visits, dental costs, complementary therapies, travel costs, overnight accommodation and counselling, including family counselling. In some cases the HSE has also reimbursed third level accommodation costs, home tuition costs, rental arrears to the local authority, gym membership and child care costs.

The Deputy asked a question related to the funding of €1.6 million. I do not have the answer before me but I will come back with the answer to Deputy D'Arcy.

Michael D'Arcy (Wexford, Fine Gael)
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Do, please.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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Deputy D'Arcy, please. Can you listen to the Chair for one moment?

Michael D'Arcy (Wexford, Fine Gael)
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Will you allow me to speak?

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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No, I will not, because your time is gone.

Michael D'Arcy (Wexford, Fine Gael)
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You will not allow me to speak. Is that correct?

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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I apologise to you if you have an issue. You should take it up with the Ceann Comhairle's office.

Michael D'Arcy (Wexford, Fine Gael)
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I asked a question. The Minister of State came in twice and did not answer the question.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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The Minister is coming back to you. Your time has passed.

Finian McGrath (Dublin Bay North, Independent)
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I answered his question. Deputy D'Arcy should calm down.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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The Deputy is eating into the time of his colleague, Deputy Burke.

Michael D'Arcy (Wexford, Fine Gael)
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It is simply not good enough. The Acting Chairman should be protecting my rights.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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Deputy D'Arcy, you got your time. Please, sit down.

Michael D'Arcy (Wexford, Fine Gael)
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I did not get an answer to my question.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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I will let the Minister of State back in for 30 seconds.

Finian McGrath (Dublin Bay North, Independent)
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I have answered the question.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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The Minister of State decided he would get back to the Deputy. Is that right?

Finian McGrath (Dublin Bay North, Independent)
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I have answered as many questions as possible. I said I would come back to the Deputy about the details of the €1.6 million.

Michael D'Arcy (Wexford, Fine Gael)
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Why did the Minister of State not have the answer available for this evening?

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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I call on both Members to sit down.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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Address the Chair, please.

Finian McGrath (Dublin Bay North, Independent)
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I gave a commitment to come back on it. I answered every other question.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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The Minister of State did. The Deputy should resume his seat.

Finian McGrath (Dublin Bay North, Independent)
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I am surprised that the Deputy is carrying on like that.

Michael D'Arcy (Wexford, Fine Gael)
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Why did the Minister of State not have-----

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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Please resume your seat, Deputy D'Arcy. I am moving on.

Michael D'Arcy (Wexford, Fine Gael)
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I asked one simple question. The Minister of State did not answer it.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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If you are concerned about patients-----

Michael D'Arcy (Wexford, Fine Gael)
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I asked-----

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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Deputy D'Arcy, please. Are you going to respect the Chair?

Michael D'Arcy (Wexford, Fine Gael)
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I will.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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Thank you. If you are concerned about patients, you do not carry on like this. The Minister of State has said he will write to you. I take his word on that. You can talk to the Minister of State afterwards. I am moving on to Deputy Burke without further interruption.

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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Please resume your seat, Deputy.

Michael D'Arcy (Wexford, Fine Gael)
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Acting Chairman, I will be making a-----

Eugene Murphy (Roscommon-Galway, Fianna Fail)
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I am calling Deputy Burke. Please resume your seat, Deputy D'Arcy.

Finian McGrath (Dublin Bay North, Independent)
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Deputy D'Arcy was too busy on the mobile.