Thursday, 9 February 2017
Topical Issue Matters
In effect, I seek an update on progress and funding of a narcolepsy clinic in St. James's Hospital. For those who perhaps are not acquainted with the condition, it is a very serious one. It has a very serious effect on people's lives and restricts their future hugely. Not only are they unable to regulate their own sleep patterns but their personalities can change drastically. There are around 70 to 200 estimated cases in the country. The State says there are between 70 and 100, but the Society of Unique Narcolepsy Disorder, SOUND, estimates that as many as 200 people of the 800,000 who were given the Pandemrix injection have this condition. It is quite hard to assess the number of young people and teenagers, in particular, who have this condition because many of the symptoms are often misidentified as hormones or changes in the lives of teenagers and young people. It is quite hard to quantify the number of people it affects. What we can say is for those who are diagnosed it is a very serious condition. Without help or treatment, those who are affected by it can have greatly reduced potential in their own lives. There are no cures but things can be made more manageable. One of the only true ways of diagnosing it is through a multiple sleep latency test, which must be done in a special overnight sleep test facility. Currently, there is only a handful in Ireland, with the Mater Hospital being the most used. There is no public sleep centre in Ireland. For people under 16, Temple Street hospital is often used. We are unique in Europe in that we are the only country without such a facility. Such a facility was committed to as far back as 2012. Funding was pledged for it. As such, I am bringing forward this Topical Issue to ascertain exactly where we are on that. It is my understanding that critical decisions are being made now on the allocation of budgets.
I have a few specific questions. Is the funding still in place? When will the project proceed? Are there timelines in place for its delivery? Has hiring of the specialists who will be needed for such a facility commenced? I understand that a leading expert in this area, Dr. Catherine Crowe, is involved in this and she has said there is a clear link between the Pandemrix vaccine and the condition. She and a great many others who are involved, and even people such as Mairead McGuinness, MEP, have highlighted the urgent need for Ireland to bring about this facility, fund it and to address this important problem. I would appreciate if the Minister of State would give me an update on that.