Ann Phelan (Carlow-Kilkenny, Labour) | Oireachtas source

I thank Senator Whelan for raising this very important issue. I have constituents who suffer from this condition. Senator Whelan will understand that I am responding on behalf of the Minister for Health, Deputy Leo Varadkar, and I will undertake to pass on the Senator's concerns about meeting the support group. Senator Whelan provides me with an opportunity to update the House on this matter.

The Minister, Deputy Varadkar, has consistently acknowledged the impact narcolepsy has, both physically and emotionally, on the lives of those affected and on their families. He is aware of 73 people with narcolepsy who received the Pandemrix vaccine. They can experience excessive daytime sleepiness; sudden and temporary loss of muscle tone, intense, vivid and sometimes terrifying hallucinations, and sleep paralysis. Dealing day-to-day with this illness affects not just their lives, but also those of their entire family.

Immunisation is a simple, safe and effective way of protecting people against certain diseases. Immunisation against infectious disease has saved more lives than any other public health intervention. In spite of the obvious benefits that come from vaccination there can be serious adverse outcomes for some people. The priority for the Minister for Health, and the priority of the HSE, is that individuals and families affected in an adverse way by vaccinations receive appropriate health care and supports. The Department of Health, the HSE and the Department of Education and Skills have worked together to provide a range of services and supports for people who were diagnosed with narcolepsy after receiving the pandemic vaccine on an ex gratia basis. These services and supports, which are co-ordinated by the HSE national advocacy unit, are intended to provide tailored assistance to address their individual requirements. The HSE regional co-ordinators for narcolepsy liaise with primary care services and hospitals to help narcolepsy patients access the health services they require. Where services are not available in the community, the regional co-ordinators assist narcolepsy patients and their families to identify private service providers. They also liaise with schools and the special education section in the Department of Education and Skills regarding educational assessments and supports.

I understand that the HSE continues to meet with SOUND and recently updated it on the development of a centre of excellence at St. James's Hospital. The centre will include a nurse specialist and dietary service and will facilitate the transition from child to adult services. Legal action has been initiated by 26 families alleging personal injury in which they are claiming the development of narcolepsy resulted from the administration of the Pandemrix vaccine. I am sure Senator Whelan understands that it would be inappropriate for me to comment further on the cases. I wish to again acknowledge the impact on the lives of these people and families affected by narcolepsy and reiterate the Minister for Health's commitment to the ongoing provision of appropriate services and supports.