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Narcolepsy Issues

Dáil Éireann Debate, Tuesday - 20 November 2012

Tuesday, 20 November 2012

Questions (566, 568, 574, 600, 604, 630, 636, 647)

Andrew Doyle

Question:

566. Deputy Andrew Doyle asked the Minister for Health if he will provide an update on sufferers of unique narcolepsy disorder regarding a package of supports; and if he will make a statement on the matter. [51817/12]

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Gerald Nash

Question:

568. Deputy Gerald Nash asked the Minister for Health when he will approve a package of measures to support young persons with narcolepsy who had been vaccinated against swine flu with pandemrix; if he will engage with the representative of an organisation (details supplied) in advance of the approval of any package; and if he will make a statement on the matter. [50836/12]

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Thomas Pringle

Question:

574. Deputy Thomas Pringle asked the Minister for Health the date on which he will publish the package of supports from the National Narcolepsy Steering Committee Study, to assist sufferers, that was due to have been published in July; the reason for the delay; and if he will make a statement on the matter. [50931/12]

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Róisín Shortall

Question:

600. Deputy Róisín Shortall asked the Minister for Health the supports available to children who have contracted narcolepsy as a result of the Pandemrix vaccine for swine flu; the measures that will be undertaken in this regard; when the Memorandum for Government setting out the full response to this issue will be brought before Dáil Eireann; and if he will make a statement on the matter. [51196/12]

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Dominic Hannigan

Question:

604. Deputy Dominic Hannigan asked the Minister for Health his plans to deal with children who are affected by narcolepsy as represented by the group called SOUND; and if he will make a statement on the matter. [51233/12]

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Dessie Ellis

Question:

630. Deputy Dessie Ellis asked the Minister for Health if he will make a commitment to provide supports for children who contracted narcolepsy associated with the Pandemrix vaccine after they turned 18 years, particularly those who are in continuing education. [51484/12]

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John Browne

Question:

636. Deputy John Browne asked the Minister for Health when he intends to honour a commitment which he gave to an organisation (details supplied) to introduce a package of supports for children suffering from narcolepsy; and if he will make a statement on the matter. [51510/12]

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Anthony Lawlor

Question:

647. Deputy Anthony Lawlor asked the Minister for Health when he proposes to put a paper to the Government on foot of the recommendations of the final report of the National Narcolepsy Study Steering Committee which concluded that the increased incidence of narcolepsy in children and adolescents in Ireland since 2009 came as a result of the a side affect of the Pandemrix vaccine administered for the H1N1 virus; when a package of supports will be put in place for those families affected; the supports that will be available; and if he will make a statement on the matter. [51576/12]

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Written answers (Question to Health)

I propose to take Questions Nos. 566, 568, 574, 600, 604, 630, 636 and 647 together.

My priority is to ensure that the children/adolescents affected are provided with services and supports to meet their health needs. Meetings have been held by myself and my Department with representatives from SOUND on a number of occasions. 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.

The HSE provides a range of services and supports to those affected including access to rapid diagnosis, clear treatment pathways, temporary medical cards and reimbursement of expenses incurred. Multi-disciplinary assessments which allow for the appropriate individualised health and educational supports to be put in place have commenced. The National Educational Psychological Service (NEPS) is also engaging with the HSE and with the individual schools and parents of children concerned to identify and provide educational supports for the children and adolescents affected.

The Department of Education and Skills has also held a number of meetings with SOUND to outline the range of educational supports which may be provided for children with narcolepsy, subject to an assessment of their needs. These supports can include special arrangements at state exams, access to Special Needs Assistant support, additional learning assistance in schools, information for schools regarding this condition, and home tuition support for children who have missed a significant time in school due to illness.

A meeting was recently held between SOUND and representatives from the Higher Education Authority National Access Office and the Department of Education Higher Education Unit, in relation to assistance which may be made for young adults with narcolepsy in Third Level education. Students with Narcolepsy may access the Disability Access Route to Education (DARE) scheme, which offers enhanced access routes to third level education for pupils with disabilities. Support can also be provided to pupils in colleges through the Disability Officers at third level colleges. The Association for Higher Education Access and Disability (AHEAD) group, which works to promote full access to and participation in further and higher education for students with disabilities and to enhance their employment prospects on graduation, will also provide assistance to SOUND in relation to these matters.

The Department is considering all other possible supports which may need to be put in place for those affected. Any such supports require my approval and the consent of the Minister for Public Expenditure and Reform. A further meeting with representatives from SOUND will be arranged when the matter has been successfully concluded.

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