Government’s attitude to narcolepsy sufferers criticised by Labour Senator

Labour Senator John Whelan has criticised the Government for its attitude to children suffering from narcolepsy.

He told the Seanad that Minister for Health Leo Varadkar should sit down with the parents of the children "who have contracted this terrible affliction and lifelong disease as a result of a State-sponsored vaccination programme''.

Mr Whelan said it was bad enough that they had contracted a disease that would damage their health and hamper their quality of life for the rest of their lives.

“However, it compounds the problem and adds insult to injury to refuse to meet the parents and to live up to our responsibilities and obligations to the children affected, to support them now and for the rest of their lives,’’ he said.

Acknowledge impact

Minister of State

Ann Phelan

said Mr Varadkar had consistently acknowledged the impact of narcolepsy, both physically and emotionally.

Sufferers could experience excessive daytime sleepiness, sudden and temporary loss of muscle tone, intense, vivid and sometimes terrifying hallucinations, and sleep paralysis, she said.

Ms Phelan said a range of services and supports, co-ordinated by the HSE national advocacy unit, provide tailored assistance to address individual requirements. A centre of excellence at St James’s hospital, Dublin, included a nurse specialist and dietary service.

Mr Whelan said he was appalled to report to the House that families had been threatened by elements within the Department of Health and the HSE that meagre supports would be withdrawn if they countenanced legal action.

"Who is representing that position? It is certainly not our position," he said. "I predict the State is sleepwalking itself into the nightmare of a queue of protracted High Court legal cases."