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HSE sorry for letter to narcolepsy sufferers, says supports will not be withdrawn

The HSE said it intends to set aside a letter sent to sufferers to inform them that supports would be withheld on the advice of the State Claims Agency.

Image: Niall Carson/PA Archive/Press Association Images

Updated 18.47

THE HSE HAS said it will not withdraw the supports offered to sufferers of narcolepsy who have taken a case against the State for its use of the swine flu vaccine.

The agency’s position has changed since a letter was sent to families to inform them that their medical expenses would no longer be reimbursed.

The Director General Tony O’Brien said he first heard of the move on RTÉ News headlines this morning and, in a statement, confirmed that he has “given a direction that such supports will not be withdrawn and that any supports have been withdrawn they will be immediately reinstated”.

Advocacy group, Sufferers of Unique Narcolepsy Disorder (SOUND), then received a phone call to say the HSE were looking to reverse the decision.

SOUND says it wants confirmation of the HSE’s latest position in writing, adding that although it welcomes the comment from O’Brien, it cannot rely on it yet.

Spokesperson Mairéad Lawless told TheJournal.ie that they would like to hear from both the Minister of Health and the State Claims Agency on the matter.

“It was not a decision by the HSE in the first place,” she said. “It was a ministerial decision. The reimbursement of claims was handed over to the State Claims Agency.”

O’Brien also said he would not consider any discrimination against any person asserting their legal rights and apologised for any distress caused to families.

The original letter, sent by Director of the HSE’s Advocacy Unit Greg Price, detailed a decision based on the direction of the State Claims Agency. It explained that reimbursements would be stopped where families had initiated legal action against the State.

In a statement this evening, HSE reiterated its position stating that the intention was not to “withdraw any discretionary medical cards or any other health services or supports”, and the letter did not say that “the State Claims Agency advised the HSE of any requirement to alter its approach in this regard”.

The State Claims Agency also clarified its position, echoing that it did not advise the HSE to change its practice of awarding medical cards and other health benefits.

SOUND now has about 60 members with the youngest sufferer aged just seven years old.

“The numbers continue to grow,” says Lawless. “We are still concerned that there has been no public campaign highlighting the issue. Some families who have just got in touch have been distressed for three years. They haven’t been able to get on a pathway to diagnosis, which the Minister himself cites as being of vital importance.

“Many people are panned off or told it is depression or panic attacks.”

The group represents those who developed the disorder after receiving the Pandemrix flu vaccine during the H1N1 pandemic in 2009. A report by the National Narcolepsy Steering Committee found that there was “a significant 13-fold higher risk of narcolepsy in vaccinated compared to unvaccinated individuals”.

The vaccine was fast-tracked because of the H1N1 crisis and the maker – GSK – given an indemnity by the government. As a result, any legal liabilities have been taken over by the Irish State. That means that any compensation bill will be footed by the taxpayer, and not the drug’s manufacturer.

Similar problems have been found in both Sweden and Norway following their vaccination programmes.

Narcolepsy is a chronic sleep disorder which can cause sleep attacks at inappropriate times but sufferers can also be impacted by muscular weakness and dream-like hallucinations.

The use of Pandemrix has ceased in Ireland and all stocks are being returned by administering GPs.

Originally published 09.40

Read: Government official defends indemnity for swine flue vaccine makers

More: Mother says she’s totally convinced swine flu jab caused son’s narcolepsy

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