Claim narcolepsy supports merely temporary

Parents of 55 children and teens who developed narcolepsy from the Government’s swine flu vaccination programme have hit out at claims they are receiving the help they need.

The Sufferers of Unique Narcolepsy Disorder (Sound) group took the stand in response to remarks by Health Minister James Reilly yesterday.

In a radio interview, the minister said “to my knowledge” all services requested by the affected families have been provided.

He said “financial and personal” assistance is being made available to 55 children and teenagers aged up to 19 who have contracted narcolepsy, a potentially dangerous condition that causes them to fall asleep without warning, after receiving the vaccine in 2009.

However, committee member Eilish Plunkett, whose 10-year-old son Seán is one of the children affected, said the minister’s claim is not supported by the facts.

“There are some services in place, but all have the term ‘temporary’ in front of it,” she said.

“By definition, these services can be taken away at any given time, even though this is a life- long illness so the supports need to be permanent.”

In Apr 2012, an official report into the incident confirmed the narcolepsy diagnoses were directly linked to the vaccine. The report called for a range of supports to be put in place to compensate and help those affected.

The supports were believed to include education services and reimbursement of medical costs.

However, Ms Plunkett said more than a year and a half on, the package of supports has yet to go before the Government.

“The children have been issued medical cards, and there are some services through the schools where exam-going children get extra help. But this all needs to be done on a permanent basis.

“As these children grow up, third-level educational needs also need to be looked at and when they go to work, there is a need to ensure they are not discriminated against.”