NARCOLEPSY SUFFERERS HAVE questioned Minister James Reilly’s commitment to putting in place supports for people with the condition.
SOUND (Sufferers of Unique Narcolepsy Disorder) said that the Minister for Health gave a clear commitment to the members that a paper would be put to Government prior to the Dáil Summer Recess which would propose a package of supports being put in place for those affected by the condition after being vaccinated with Pandemrix.
This was following the final report of the National Narcolepsy Study Steering Committee on the Investigation of an increase in the incidence of Narcolepsy in Children and Adolescents in 2009 and 2010 concluded that the increased incidence from 2009 was associated with vaccination with Pandemrix.
Delayed
SOUND said its members were advised that this paper was delayed but that it would be put to the Dáil in September 2012, and were then advised that it was again delayed until October.
The most recent communication SOUND has had from the Department of Health is that a statement will be made by the Minister for Health in four to six weeks with no mention of the proposed paper on supports being put to the Dáil.
SOUND said:
We are most disappointed at the lack of follow through on the Minister’s undertaking and terribly anxious and concerned for our children’s future. The Children’s Referendum was passed last weekend yet children with Narcolepsy due to a State sponsored vaccination programme seem to have been forgotten. What does this say about the Government’s real commitment to Children?
Questions were raised on SOUND members’ behalf in the Dáil on 6 November. The Minister responded that his department is working closely with the Health Service Executive (HSE) and the Department of Education and Skills to address the needs of those affected by narcolepsy following pandemic vaccination.
He went on to detail the services and supports available to those affected, including access to rapid diagnosis, clear treatment pathways, temporary medical cards and reimbursement of expenses incurred.
My Department is considering all other possible supports which may need to be put in place for those affected. He added that such supports require my approval and the consent of the Minister for Public Expenditure and Reform and his officials are currently engaged in discussions with the Department of Public Expenditure and Reform on this issue.
He reassured “that this matter continues to be a priority for my Department.”
SOUND said:
The Minister’s written statement makes no mention of the Proposal of a Package of Supports and I believe the Minister is reneging on his commitment to children, adolescents and adults represented by SOUND.
SOUND requested an urgent meeting with the Department of Health and the Minister for Health and were told the department will be in contact when its work has been finalised.
The support group said that while some progress has been made, “it remains unclear what supports will be made available to our children into the future”. It accused the Minister of having “evaded the specifics of the questions put to him”.
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