Thomas Byrne (Fianna Fail)

Tá mé an-bhuíoch don Leas-Chathaoirleach as ucht an díospóireacht seo a roghnú ar an Athló, díospóireacht a bhfuil an-thábhachtach, i mo thuairimse.

I raise the specific issue of narcolepsy which has been diagnosed recently in at least 32 children in Ireland who received the Pandemrix vaccine at the time of the swine flu epidemic. Narcolepsy is a malfunction of the sleep-wake regulating system in the brain. There are thought to be 2,500 sufferers in Ireland but there are at least 32 persons in Ireland who have developed it since the swine flu epidemic and the administration of the Pandemrix vaccine at that time. The symptoms include excessive sleepiness during the day time - so-called sleep paralysis - micro-sleep, where the person continues to function even though asleep, and night-time wakefulness. There is a further condition called cataplexy, which is the sudden loss of muscle control and is very dangerous for people who might want to engage in activities such as driving or normal day-to-day business. There is also a syndrome known as sleeping beauty syndrome, which is very frightening. One can imagine from its name what is entailed.

At the time of the administration of the vaccine, studies were carried out in the Scandinavian countries plus Finland which identified some causal links between the vaccine and narcolepsy, which is having a terrible effect in particular on young people in Ireland. I know at least one of the families involved in this issue and know it is literally a living nightmare for them.

There are many medium-term and long-term issues to be addressed. While I will not deal with them all today, I put the Minister for Health on notice that I intend to raise this on an ongoing basis. I wish to focus on two issues that arise for the families concerned. First, a study is currently being carried out by the Department of Health - it is referred to as an inquiry, although I am not sure of its exact status - with regard to the causal links between Pandemrix and narcolepsy. We understand this study is about to be completed. What the parents want as soon as possible is for the report to be released at least to them so that, if there is valuable information in that document or reference to research of which the Department has become aware in recent months, it would be made available to the families in the hope that a better situation for their children may result.

Second, the families want to know what efforts are continuing at a pan-European level in terms of examining further the causal links and the treatments that are available. At present, only two treatments are available, namely, ritalin and Provigil. These are both essentially stimulants to keep children awake and are not cures for the disorder. They temporarily deal with some of the symptoms that arise, as I understand it. The families want to know from research at pan-European level in regard to rare diseases, which we debated in the House some weeks ago, what efforts are under way. This problem has arisen throughout Europe and we will not solve it on our own.

The families involved want one point person to deal with in Departments. The families were offered medical cards, for example, and most have availed of this. Initially, however, the staff in the medical card section did not seem to know about this offer and people were refused medical cards even though they had been promised. While I understand this has been addressed, other issues arise, in particular in regard to the Department of Education and Skills and how these children are dealt with at school. As the Minister of State can understand, if children have the symptoms I have described, it is very difficult for them to continue their ordinary day-to-day activities, which mainly involve school at their current ages. They want one point person, preferably in the Department of Health but one who can also speak to the Department of Education and Skills, to whom they can bring all the issues, which would be helpful. These people are going through something that has not been gone through before and deserve further help.

Many other issues arise. The families have set up an organisation called SOUND and they have been making a lot of sound about this. At present they are willing to work with the Government but they are anxious to have some contact from the Department in regard to the studies that are ongoing.

At the outset I quoted from an Irish Examiner article of 25 February. While I do not have the name of the journalist, I hope I can put it on the record as I quoted directly from her article, although I must return to my office to get her name. The article certainly explains the situation very clearly and in depth.

That is what I have to say at this stage. I put the Minister on notice that the parents involved are banding together in a representative body, as they should do. They intend to make noise about this and to do the best for their children. We would not expect anything less.