Disappointment at HSE on narcolepsy progressFriday 13 January 2012 12.26
The group representing families who believe their children developed the sleeping disorder narcolepsy after vaccination are disappointed with how little progress has been made.
They believe their children developed narcolepsy after getting the human swine flu vaccine Pandemrix in late 2009 and early 2010.
They say they are disappointed with how little progress has been made to deal with their concerns and the health and educational needs of those affected.
Sound (sufferers of unique narcolepsy disorder) now represents 31 families and says 22 children have been diagnosed with the disorder, while others are awaiting the results of tests.
Mairead Lawless of Sound said most of the people that had applied for medical cards have now been approved by the HSE and this was of some help towards GP costs.
The children or young adults range in age from 5 to 21 years.
Ms Lawless said there had been no payments yet by the HSE for general medical expenses for those affected by narcolepsy, access to full multidisciplinary teams had not been set up for children, including psychological support and there is no indication of how the HSE intends to establish if Pandemrix is linked to narcolepsy.
She said families also want the necessary educational support, up to and including third level for those affected.
She said the Irish health service needs to ensure professional staff are up to date with the disorder and what is happening internationally.
Ms Lawless said health authorities in Finland were satisfied that a link has been established between Pandemrix and the development of narcolepsy in children.
They have commenced a compensation process which includes an initial payment, ongoing assessment of needs and possibly the payment of a lifetime pension where the individual's ability to work and make a living is affected.
The group met with the Health Minister late last September and hopes is have another meeting soon.