Thursday, 30 November 2017
Department of Health
173. To ask the Minister for Health further to Parliamentary Question No.971 of 17 January 2017, the status of the provision of promised funding for St. James's Hospital narcolepsy service; when funding will be provided for this clinic; his views on the situation whereby Ireland is one of the only countries in Europe without a dedicated sleep clinic; and if he will make a statement on the matter. [51389/17]
My Department, the HSE and the Department of Education and Skills continue to work together to provide a wide range of services and supports for those affected by narcolepsy following pandemic influenza. These include discretionary medical cards, reimbursement of expenses associated with diagnosis and treatment, home tuition and learning supports. 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 (sufferers of unique narcolepsy disorder). Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services.
The ex-gratiahealth 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.
The development of a national service for patients with all forms of narcolepsy in adults, and in children transitioning from pediatric services, in St James Hospital is being prioritised . The HSE is currently in the process of preparing its 2018 National Service Plan and discussions are continuing with my Department. The timeframes for submission of the HSE Service Plan for approval are set down in legislation and on receipt of the letter of determination, the HSE has 21 days to prepare and submit its Service Plan for 2018 for my approval. Following this, the National Service Plan will be laid before the Houses of the Oireachtas and then published at the earliest possible time.
In the interim, the HSE will continue to pay for access to 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.