John Whelan (Labour) | Oireachtas source

It is with some degree of disappointment and dismay that I raise the issue this afternoon once again of narcolepsy sufferers and their families in this country. On the advice of the Cathaoirleach - which was very good advice and which I took - I raised the matter on the Adjournment on 27 September last year. At that stage the Minister for Health, Deputy James Reilly, indicated that the State was taking its responsibilities to these families seriously and was putting in place a package of long-term supports for the families and the young people who have been struck down by this distressing and debilitating condition as a result of the swine flu vaccine Pandemrix.

There are only 54 diagnosed young people in the county with the condition. It would not be an undue or heavy burden on the State or the Department to honour its commitments. I imagine the Cathaoirleach would agree, as would the Leader, that we need to ask the Minister for Health to come before the House at the earliest juncture and indicate why to date the Department of Health has abdicated its responsibilities to these young people, who live with an appalling affliction through no fault of their own. It is a lifelong condition that affects their career prospects, sitting examinations and long-term employment. There is a difficulty if we cannot have confidence in the replies afforded to us in the House by Ministers. I took the reply from the Department of Health at face value and as an accurate and honest response. However, nine months on, today, the families of the support group came to Leinster House and told us that none of what was promised or committed to then has been adhered to or fulfilled. I thank the Cathaoirleach for bearing with me. I believe the Department of Health and the Minister should step up and support these families and young people. It would be absurd and immoral not to do so.