NEWS SPECIAL: Parents slam inaction after narcolepsy support pledge

Children who developed narcolepsy after receiving the swine flu vaccine have yet to be offered a comprehensive package of supports almost a year after a Government pledge.

The situation is in stark contrast to action by the Finnish government, where €30m has been set aside to pay for medical care, travel costs for treatment, and other expenses.

Máiréad Lawless, whose son Alex, 8, has narcolepsy, said Health Minister James Reilly had given “a clear commitment” to the lobby group Sound (Sufferers of Unique Narcolepsy Disorder), that a paper would be put to the Government prior to the 2012 Dáil summer recess proposing a package of supports. This did not happen.

Revised deadlines of September and October were also missed.

She said that while some supports had been made available, such as a temporary medical card and educational supports, they lacked permanency and parents fear they may be discontinued at any time.

“There is no long-term commitment as yet to children who now have a lifelong disorder due to vaccination with Pandemrix,” said Ms Lawless.

Sound wants its 47 members, 38 of whom are under 18, to be supported financially if they are unable to work. They also want clarity in relation to what allowances those affected are entitled to, and want parents whose ability to work is compromised, due to their children’s condition, to have some form of assistance.

Last April, Dr Reilly said his department was working with the HSE and the Department of Education “to put in place necessary supports” for those affected.

The promise was made on the day a government-commissioned report found there was an 13-fold increased risk of developing narcolepsy in children aged 5-19 who had received Pandemrix.

Dr Reilly said the report was “a start in understanding the association between the vaccine and narcolepsy”, but that their “main focus” was on those affected.

However, Sound claims the process has stalled.

In a letter to the minister last month, Sound chairperson Mary Fitzpatrick said they were “extremely upset and frustrated” with the continuing lack of progress, given some of the children affected developed narcolepsy three years ago.

GlaxosmithKline, maker of Pandemrix, does not have to foot any of the bill as it was given a State indemnity.

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