Seán Ó Fearghaíl (Kildare South, Fianna Fail) | Oireachtas source

I would have expressed disappointment that the Minister for Health is not present, but with everything taken into account I may have more confidence in the assurances provided by the Minister of State, Deputy Brian Hayes. The final report of the national narcolepsy study steering committee was published on 19 April 2012. The report was commissioned following concerns about an increase in narcolepsy among those who were administered the swine flu vaccine Pandemrix. The report found that the risk of narcolepsy was 13 times higher among those given the swine flu vaccine than in unvaccinated individuals. At the time of the epidemic, approximately 900,000 people were vaccinated. The report states that symptoms developed between two weeks and 20 months after vaccination and there was increased risk of narcolepsy among young people aged between five and 19 years.

Inevitably, a campaign group was set up to represent families who believe their children have been affected. The group, which is called Sufferers of Unique Narcolepsy Disorder, SOUND, represents more than 30 children and their parents. SOUND has been seeking health and educational supports, as well as a compensation programme. I raise this matter on behalf of the group and I am aware that other Deputies have also raised it by means of parliamentary questions. Correspondence received by my colleague, Senator Thomas Byrne, from the parent of a sufferer describes the difficulties that arise. The correspondence states that the final report of the national narcolepsy study steering committee concluded that the higher incidence of narcolepsy among children and adolescents was associated with vaccination with Pandemrix. The Minister for Health subsequently gave a clear commitment to the members of SOUND that a paper would be presented to the Government prior to the previous summer recess to propose a package of supports for those affected. SOUND was later advised that the paper had been delayed but would be put to the Dáil in September 2012. It was then delayed until October. The most recent communication with SOUND is that a statement will be made by the Minister in the next four to six weeks, with no mention of the proposed paper or further consultation with SOUND. The parent was most disappointed at the lack of follow-up by the Minister and was concerned for the future of his teenage daughter.

Notwithstanding the children's referendum, children with narcolepsy due to a State-sponsored vaccination programme appear to have been forgotten. What does this say about the Government's commitment to children? The correspondent's daughter was vaccinated against the H1N1 virus in November 2009 and, following 18 months of fear, anxiety and misdiagnosis, was conclusively diagnosed with narcolepsy as a result of the vaccination.

This means that for this family the journey began three years ago. The chronic condition is not curable and is managed with lifetime medication, with only limited success. The daughter suffers constantly from narcolepsy and frequently also suffers cataplexy attacks - complete loss of muscle tone - and has recently begun to experience disturbing night terrors. Her quality of life and her ability to fulfil her potential in sport, education and normal social behaviour have all been dramatically diminished by this terrible consequence of the State-promoted vaccination programme. The quality of life of her siblings has also been adversely affected by her condition, as has normal family life. The parent believes that the Minister, his Department and the HSE are reneging on their collective duty and, in particular, on the Minister's personal commitment to this child and the other children, adolescents and young adults, to meet the needs of their particular circumstances.

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