Michael D'Arcy (Wexford, Fine Gael) | Oireachtas source

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.

See this speech in context