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Barry Cunningham
Posted on 14 Feb 2017 4:12 pm

Dear Marcella,

Thank you for the reply but it is yet another stock answer to a series of recent questions raised by TDs/Senators who have been contacted by affected constituents.

We have been asking and lobbying since well before Christmas to allocated funding. Your reply is how we found out there was none.

You say 'It is a priority for the Department of Health and the HSE that the individuals and families affected by narcolepsy receive appropriate health and social care supports.'

With no funding for the facility in St. James' Hospital there is no progress.

The 'ex-gratia' services are hit and miss, poorly communicated to families - we aare still finding discrepancy of service delivery to affected children and adults.

We tend to see progress when we 'shout' about it but bar one person from the HSE Advocacy Unit there has been no proper contact with SOUND - the support group for people affected by Pandemrix Narcolepsy.

These children and young adults don't just fall asleep. The horrifically vivid night terrors ensure fitful sleep, the complete loss of muscle control at highly emotional moments is debilitating. There is much more and all of it caused by the state allowing an untested flu vaccine to be administered.

We have no voice in the HSE, no focal point. There are wonderful individuals in Temple St, St. James and others but there is no co-ordinated approach to helping this group of people.

We want to make our case to you and the Minister so we can outline what our children need.

Will you help us?

Father of Pandemrix Narcolepsy victim.


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