National Narcolepsy Support Coordination Needed – Stanton

“A structured support package and advocate is needed for people who developed narcolepsy as a result of receiving the swine flu vaccine in 2009 and 2010” says Cork East Fine Gael TD, David Stanton.   National figures show that 74 young people and children developed the condition after they received the Pandemrix vaccine.  

“Having been contacted by constituents whose children have been diagnosed with narcolepsy and cataplexy, I raised this issue during Topical Issues today (Wednesday) to highlight their concerns.   Narcolepsy is a serious, life-long and incurable neurological disorder and sufferers experience heavily disturbed night-time sleep, nightmares and perceptual hallucinations.   The sleep deprivation this causes results in the urge to sleep during the day.   Many narcolepsy sufferers also experience cataplexy which is a sudden and transient episode of muscle weakness accompanied by full conscious awareness.  

“While these 74 people have access to an array of state supports, they point out that as there is no national policy in place. Each support and service must be applied for separately which is very time consuming and can be stressful.   The lives of the sufferers, and their families, have been changed forever since diagnosis as the psychological, physical and emotional impact of this condition is huge.

“I understand that access to health supports, such as reimbursement of medical costs, medical cards, travel costs, has been improved since 4 regional co-ordinators were appointed in the HSE.   I believe that Disability Allowance is available to narcolepsy sufferers from the Department of Social Protection and that education supports are available in the form of home tuition, reasonable accommodation in state exams and the DARE (Disability Access Route to Education) programme assisting in access to third level.  

“However, what sufferers and their support group, SOUND (Sufferers of Unique Narcolepsy Disorder), would like, above all, is a kind of one-stop-shop or advocate to assist them in accessing supports and services.   I was pleased that Minister Lynch agreed to look into the possibility of a better co-ordinated approach.

“In addition to a national policy and cross-departmental support structure, I understand that some parents of sufferers would also like to see improved access to international expertise and a centre of excellence which would assist particularly when some patients have adverse effects to medication and treatment.”