Dáil Éireann Debate, Thursday - 22 November 2012
192. Deputy Finian McGrath asked the Minister for Health the position regarding the case of a person (details supplied) in Dublin 3 who contracted narcolepsy with cathaplexy from the Health Service Executive swine flu injection; the supports that will be put in place for them in the future; if they are entitled to compensation as a result of HSE administering the drug that caused it [52002/12]
View answer197. Deputy Derek Nolan asked the Minister for Health his plans to propose a package of supports for children and families affected by Narcolepsy after vaccination with Pandermrix; and if he will make a statement on the matter. [52056/12]
View answerI propose to take Questions Nos. 192 and 197 together.
Our priority is to ensure that the children/adolescents affected are provided with services and supports to meet their health needs. 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. Meetings have been held by myself and my Department with representatives of the support group Suffers of Unique Narcolepsy Disorder (SOUND).
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.
I have requested that the HSE engage directly with the individual named in the Deputy's question, to provide all required supports.
