Colm Keaveney (Galway East, Independent) | Oireachtas source

I thank the Office of the Ceann Comhairle for the selection of this topic.

On 19 April, a report entitled "Investigation of an increase in the incidence of narcolepsy in children and adolescents in 2009 and 2010" was prepared by the Department. The report was supported by the Health Protection Surveillance Centre and was published by the chief medical officer, Dr. Tony Houlihan, on behalf of the Minister, Deputy James Reilly. The report found that there was a significant 13-fold higher risk of narcolepsy among the vaccinated compared to those who were not vaccinated. The Minister for Health gave a commitment to Sufferers of the Unique Narcolepsy Disorder, SOUND, the organisation that represents families affected by narcolepsy. The Minister then gave a commitment to the families affected that a package of supports would be brought forward by the Government before the summer recess of 2012. It is a year since the report was published. Children and young adults who have developed narcolepsy as a result of the administration of Pandemrix have no permanent support package in place despite the Minister's commitment.

SOUND, the organisation representing the families affected, is concerned that the Minister is refusing to engage with it to design a package to respond to the needs of the families devastated by the effects of the symptoms of Pandemrix, which can have serious consequences for the welfare of the family and individual concerned.

It is important to note at this point that the Pandemrix vaccination was given as part of a State programme. Having listened to the testimonies of the families affected, I understand there are four main symptoms and effects of narcolepsy, including extreme sleepiness, muscle weakness while awake, hallucinations and sleep paralysis. Many of the young people affected are due to sit State examinations this year. These young adults are without the capacity to control their bodies and are sleeping up to 20 hours a day, which means they may not be able to sit their examinations. Parents often have to leave their place of work to babysit their young adult children as a consequence of the symptoms of the Pandemrix vaccination.

I invite the Minister of State to comment on the Department's plans to engage with SOUND on behalf of those affected by Pandemrix. Can we expect, this side of the summer recess, an engagement with this organisation that will put a construct on the needs of the individuals involved so that they can have a realistic opportunity of support from the Department and avail of all of the services available in situations comparable to this?

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