Finian McGrath (Dublin Bay North, Independent) | Oireachtas source

I thank Deputy Michael D'Arcy for raising this very important issue and for allowing me the opportunity to give an update to the House on the matter. I acknowledge the impact of narcolepsy on all people who have been diagnosed with it. In particular, I am aware of a specific group of individuals who claim to have developed narcolepsy as a result of receiving pandemic vaccine during the 2009 influenza pandemic. Many among this group were children at the time of their diagnosis.

As Deputies are aware, immunisation is a simple, safe and effective way of protecting children against certain diseases. It has saved more lives than any other public health intervention, apart from the provision of clean water. In spite of the obvious benefits that have come from vaccination, I must also acknowledge that there have been adverse outcomes for a very small number of people arising out of vaccination.

The priority of the Department of Health and the HSE is that the individuals and families affected receive appropriate health and social care supports. Therefore, my Department has engaged with the HSE, the Department of Education and Skills and the Department of Social Protection to ensure the provision of a range of services and supports on an ex gratiabasis.

The HSE's advocacy unit acts as liaison with other service providers and Government Departments to facilitate access to the required services. It is in regular contact with individuals affected. 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 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, which have been provided to allow unlimited access to general practitioner care and any prescribed medication; ex gratiareimbursement of vouched expenses incurred in the process of diagnosis and treatment, including travel expenses for attending medical appointments; and physiotherapy, occupational therapy assessments, dental assessments and dietary services, all on a needs basis.

Every possible measure is in place to ensure rapid diagnostic services. Consultants in sleep medicine from the Mater Private Hospital and the Children's University Hospital, Temple Street, have been involved in the diagnosis and treatment of many of the narcolepsy patients. As many of the patients are now becoming adults, work is under way to set up a centre of excellence for narcolepsy based at St. James's Hospital which will include the following services: a nurse specialist, dietary service, psychological service and a full service between St. James's Hospital and the children's hospitals.

It is acknowledged that treatment and individual medical needs may need to be reassessed over time. Consequently, the services and supports provided are reassessed on an ongoing basis to take account of any changes in the individuals' conditions and circumstances.

Finally, I acknowledge the impact on the lives of those people and families affected by narcolepsy and reiterate our commitment to the ongoing provision of appropriate services and supports.

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