Update: Narcolepsy Patients – Health 30th September, 2014

 
  *  To ask the Minister for Health the extent to which the services currently available for children and parents suffering from narcolepsy; and if he will make a statement on the matter.

                                                                         Bernard J. Durkan T.D.

 
REPLY.
The Health Service Executive and the Department of Education and Skills continue to provide a range of services and supports to individuals diagnosed with narcolepsy following pandemic vaccination regardless of age, on an ex-gratia basis.  These services and supports which are co-ordinated by the HSE National Advocacy Unit are intended to provide that individuals receive tailored assistance to address their specific requirements, where appropriate.  It is acknowledged that treatment and individual medical needs may need to be reassessed over time to take account of changes in their condition or circumstances.  

The ex-gratia health supports include clinical care pathways to ensure access to rapid diagnosis and treatment, multi-disciplinary assessments led by clinical experts, counselling services for both the individuals and their families, discretionary medical cards for those who have been diagnosed have been provided to allow unlimited access to GP care and any prescribed medication, ex-gratia reimbursement of vouched expenses incurred in the process of diagnosis and treatment, including travel expenses for attending medical appointments; physiotherapy, occupational therapy assessments, dental  assessments and dietary services all on a needs basis.  Regional co-ordinators have been appointed to assist individuals to provide advice, information and access to local services.

On the education side, the National Educational Psychological Services (NEPS) engaged with all of the schools being attended by children with narcolepsy to provide guidance and assistance on the condition and the supports available.  These include special education home tuition, the provision of supplemental learning support/resource teaching support on a needs basis and the provision of Special Needs Assistants (SNA) support if required.  Furthermore, reasonable accommodations, including special examination centres and rest breaks were provided for students who sat state exams in June.  Similar arrangements will be available on a needs basis to students sitting state exams in future years.  The Department of Education and Skills issued circulars providing information to schools on the nature, likely symptoms, possible effect of the condition of narcolepsy on students and the supports available for students.

With regard to third level, students diagnosed with narcolepsy following pandemic vaccination can access the Disability Access Route to Education (DARE) scheme, which is a college/university scheme which offers enhanced access routes to third level education.

All health and educational services and supports will continue to be provided on an ex-gratia basis.  Those services and supports will be reassessed on an ongoing basis to take account of the individual’s condition and circumstances.