Tuesday, 22 May 2018
Department of Health
I met with representatives from SOUND in March 2017 as part of ongoing engagement. The HSE’s Advocacy Unit acts as liaison with service and support providers and other Government Departments to facilitate access to required services. It is in regular contact with individuals affected and regularly meets with representatives of the SOUND. Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services.
The Department of Health, the Health Service Executive (HSE), and the Department of Education and Skills, continue to work together to provide a wide range of services and supports for those who have received a diagnosis of narcolepsy following administration of the pandemic influenza vaccine. These include discretionary medical cards, reimbursement of expenses associated with diagnosis and treatment, home tuition and learning supports.
The ex-gratia health supports include clinical care pathways to ensure access to 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.
Work has commenced on the Centre of Excellence for Narcolepsy based in St James's Hospital which will cater for all people diagnosed with narcolepsy, including those diagnosed with narcolepsy after receiving pandemic influenza vaccine. This service will combine a new patient referral system with access to expert consultant and advanced nursing expertise for clinical diagnosis, access to the latest neurophysiological diagnostic techniques with overnight and daytime monitoring for both in-patients and outpatients, laboratory testing, brain imaging and genetic testing. The HSE will continue to pay for access to the services, such as dietician and psychology services, that would have been provided in the Centre of Excellence from private providers to so that none of the affected individuals miss out on receiving these supports.