Supports promised to over 50 people who developed narcolepsy after being vaccinated with the swine flu vaccine, Pandemrix, are still not in place, despite the Minister for Health promising they would be available last summer.

Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep/wake cycles normally. There is no cure for it and symptoms can include excessive daytime sleepiness , cataplexy (sudden loss of muscular/postural tone), vivid hallucinations during sleep or after wakening and brief episodes of total paralysis at the beginning or end of sleep.

In September 2011, a group of parents who believed their children had developed the condition as a result of receiving the Pandemrix vaccine officially launched the support group, SOUND (Sufferers of Unique Narcolepsy Disorder). It currently represents 54 children, teenagers and adults.

One year ago - on April 19, 2012 - the report, Investigation of an Increase in the Incidence of Narcolepsy in Children and Adolescents in 2009 and 2010, which had been written by the National Narcolepsy Study Steering Committee was published by the chief medical officer, Dr Tony Holohan, on behalf of the Minister for Health, Dr James Reilly.

The report found that ‘there was a significant 13-fold higher risk of narcolepsy in vaccinated compared to unvaccinated individuals'.

Following that report, Minister Reilly ‘gave a commitment to SOUND that a package of supports would be brought to government for approval prior to the summer recess in 2012'.

However, according to Mairead Lawless of SOUND, one year later, those affected ‘have no permanent support package in place and the Minister for Health refuses to meet with parent representatives to advise why the delay has been encountered and what the eventual package might comprise of'.

She emphasised that the Pandemrix vaccine was provided ‘as part of a State-sponsored and promoted vaccination campaign'.

In the absence of a government support package, SOUND has drawn up its own list of supports which it believes its members require. These include:
-Awareness campaigns aimed at the public and health professionals, including GPs
-Access to rapid diagnosis.

Following diagnosis, sufferers should be given automatic and immediate access to:
-A special services medical card to cover the cost of all doctor visits, medication and treatment. This should be a lifelong card
-Continuing educational support at primary and secondary school level
-A special education grant for third level education as it is unlikely those affected could work part-time or during the summer to contribute to their costs
-Training opportunities for those who do not attend college
-Access to international expertise
-Access to new drug treatments
-Rapid access to the Carers Allowance or Domiciliary Care Allowance for parents who have had to reduce hours or give up work to look after their children
-Compensation
-The official recognition of narcolepsy as a disability so that members can avail of Disability Allowance in the future if they are unable to work because of their condition.

SOUND is holding a day of action today to highlight this issue on the one-year anniversary of the release of the narcolepsy report. The group plans to hand in a letter for the Minister of Health at the Department of Health later today. This letter contains details of the package of supports it would like to see for its members.