Dominic Hannigan
Question:625. Deputy Dominic Hannigan asked the Minister for Health his Department's interaction with the campaign group, SOUND; and if he will make a statement on the matter. [25334/14]
View answerTuesday, 17 June 2014
Questions (625, 626)
Dominic Hannigan
Question:626. Deputy Dominic Hannigan asked the Minister for Health the Health Service Executive's interaction with the campaign group, SOUND; and if he will make a statement on the matter. [25335/14]
View answerWritten answers
I propose to take Questions Nos. 625 and 626 together.
Both myself and officials from my Department, the Health Service Executive and the Department of Education and Skills have met with representatives of SOUND (sufferers of unique narcolepsy disorder), on a number of occasions, to address their concerns and outline services available.
My priority as Minister for Health is to ensure that children/adolescents affected by narcolepsy with symptom onset post pandemic vaccination are provided with services and supports to meet their health needs.
The HSE and the Department of Education and Skills 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 health supports include clinical care pathways to ensure access to rapid diagnosis and treatment, multidisciplinary 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, 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 coordinators have been appointed to assist individuals to provide advice, information and access to local services.
The HSE Advocacy Unit is in regular contact with individuals affected by narcolepsy and meets representatives of SOUND on an ongoing basis to respond to issues as they arise. I have also met with representatives of SOUND on two occasions to discuss their needs. Furthermore the Chief Medical Officer and officials from my Department, the HSE and the Department of Education and Skills have met with SOUND a number of times, the last occasion in November 2013 to address issues of concern.