Dáil Éireann Debate, Tuesday - 26 March 2013
559. Deputy Dominic Hannigan asked the Minister for Health if a package of supports for children who suffer from unique narcolepsy disorder is being submitted to the interested Departments for comment and approval; if the package has been prevented from being enacted by the office of the Minister for Public Expenditure and Reform; and if he will make a statement on the matter. [14985/13]
View answer560. Deputy Dominic Hannigan asked the Minister for Health if he is still committed to making a range of supports available for children who suffer from unique narcolepsy disorder; and if he will make a statement on the matter. [14986/13]
View answer561. Deputy Dominic Hannigan asked the Minister for Health the number of the children and young adults suffering from narcolepsy caused by the pandemrix vaccine that he has met; and if he will make a statement on the matter. [14987/13]
View answer562. Deputy Dominic Hannigan asked the Minister for Health if he will agree to meet with representatives of the SOUND advocacy within the next three months; and if he will make a statement on the matter. [14988/13]
View answer563. Deputy Dominic Hannigan asked the Minister for Health the reason for the lack of progress of the report to him containing the list of necessary supports for the children and young adults suffering from narcolepsy caused by the pandemrix vaccine; and if he will make a statement on the matter. [14989/13]
View answerI propose to take Questions Nos. 559 to 563, inclusive, together.
Both myself and officials from my Department, the Health Service Executive and the Department of Education and Skills have met with SOUND, the advocacy group for those diagnosed with narcolepsy following pandemic vaccination, on a number of occasions, to address their concerns and to outline the services available. My priority is to ensure that children/adolescents affected by narcolepsy, with symptom onset post pandemic vaccination are provided with a range of services and supports to meet their health needs.
The Health Service Executive has responsibility for health service delivery and at my request the HSE developed a range of appropriate services and supports to address the needs of this group. Together, the HSE and the Department of Education and Skills provide a very comprehensive range of services and supports to those affected. These supports and services include access to rapid diagnosis, clear treatment pathways, temporary medical cards and reimbursement of expenses incurred. This includes expenses for counselling services for individuals and also for families of children affected by narcolepsy following pandemic vaccination, in cases where such services are not already available through the HSE. Multi-disciplinary assessments which allow for the appropriate individualised health and educational supports to be put in place are ongoing. 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 HSE's advocacy unit is in regular contact with the support group SOUND and last met representatives of the group on 28 February 2013. Through regional co-ordinators, the HSE also has frequent contact with individual members of SOUND and recently held an information day to ensure those affected were fully aware of all of the the services available.
My Department is considering all possible supports which may need to be put in place for those affected by Narcolepsy following pandemic vaccination. My 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. My officials are engaged with relevant Departments to progress this issue. I would like to assure the Deputy that this matter continues to be a priority for my Department. A further meeting with representatives from the support group will be arranged when the matter has been concluded.
