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Support Group Calls for Increased Government Action in Child Narcolepsy Cases

A support group has called for the government to increase their efforts and follow through on the promises made to the families of children suffering from narcolepsy.

The Irish organisation Sufferers of Unique Narcolepsy Disorder (SOUNDS) recently made a public claim that the government has not fulfilled its promise to provide assistance for children suffering from the side effects of the 2009/10 flu jab. Families in the UK who suffer from similar circumstances have been offered compensation for adverse effects to Pandemrix, while no such offer has been made to Irish families.

SOUND’s statement comes in response to remarks made by Health Minister James Reilly while being interviewed at a radio station last week. In the interview, the health minister said that, to the “best of his knowledge”, all the personal and financial assistance that had been requested by families in Ireland whose children had contracted narcolepsy after being administered the flu vaccine Pandemrix had been provided.

Eilish Plunkett – a member of the SOUND committee – has claimed that the minister’s statement is incorrect. Ms Plunkett’s son Sean is one of the children suffering from narcolepsy as a result of the Pandemrix flu vaccine,. She commented that although “some services and financial compensation for the adverse effects to Pandemrix were in place”, the medical assistance that was being provided was classified as a temporary measure.

Ms Plunkett said that the provision of support services and financial compensation for the adverse effects to Pandemrix could be removed at any time at the discretion of the government. She states that her son had a permanent illness which needed life-long support. She added that a package of permanent support measures recommended in the official 2012 report “Investigation of an Increase in the Incidence of Narcolepsy in Children and Adolescents in 2009 and 2010” had still not gone before the government for approval. This is in spite of assurances from the Health Minister that they would be approved prior to the 2012 summer government break.

Meanwhile families in the UK have been told that – provided it can be shown that their children have suffered a severe disability – they will be eligible for compensation for the adverse effects to Pandemrix through the Vaccine Damage Payments Scheme administered by the UK´s Department for Work and Pensions (DWP). A DWP spokesperson said “The Department for Work and Pensions has looked at some vaccine damage payments cases again in light of new information regarding swine flu and narcolepsy provided by the Department for Health”.

More than 800,000 doses of Pandemrix were administered in Ireland throughout the winter of 2009/10. The Health Service Executive said it knew of thirty cases of the sleeping disorder narcolepsy among children who were administered the vaccine. However, the support group SOUND claims to represent the interests of fifty-four children who are suffering from adverse effects to Pandemrix, and that the government figures are not accurate.

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