Dinny McGinley (Donegal South West, Fine Gael)

Gabhaim buíochas don Seanadóir as ucht na ceiste an-thábhachtach seo a árdú agus an seans a thabhairt domsa é a thógáil ar an Athló.

As Senators are aware, the H1N1 influenza pandemic alert was issued by the World Health Organization in 2009. As part of the response, two pandemic vaccines were provided in Ireland, Pandemrix and Celvapan. Subsequently, the Irish Medicines Board, IMB, reported two confirmed cases of narcolepsy in people who had been vaccinated, and it was agreed the Health Protection Surveillance Centre, HPSC, would work with the IMB and clinical experts in narcolepsy to examine the Irish data. The HPSC conducted a retrospective population-based study and submitted a report to the Department of Health in February 2012.

The parents of those affected have formed a group, Suffers Of Unique Narcolepsy Disorder, SOUND. The Minister has already met SOUND and is available to do so again. SOUND has raised the issue of obtaining international expert advice on this matter and the HSE has agreed to facilitate this request. SOUND is obviously concerned about the possible effects which a diagnosis of narcolepsy may have on their children's education. Officials from the Department of Health, the HSE and the Department of Education and Skills have been meeting SOUND to address the parents' concerns. There will be ongoing contact between the Department of Health and SOUND and I understand a further meeting will take place in approximately six weeks. Two members of SOUND sit on the HSE serious incident alert group which is managing the issue.

I want to draw to the House's attention the additional supports being put in place, as follows: senior officials from the Department of Health met with their counterparts in the Department of Education and Skills to brief them on the report and to discuss the possible educational supports which may be required for the children affected; the HSE will assign a named individual as a single point of contact where families' service issues can be addressed; a case definition has been agreed by clinical experts; the HSE will begin a multidisciplinary needs assessment of the children affected by requesting primary care physicians or specialists to refer to a nominated lead in each of the four regions - the regional leads have been appointed and the assessments will begin shortly; the multidisciplinary assessments will allow appropriate health and educational supports to be put in place for affected children and adolescents - those about to undertake State examinations will be prioritised; and the multidisciplinary assessments will be repeated every two years to assess the changing needs of those affected.

The Department of Health will consider all other possible supports which may need to be put in place for those affected. The possibility of having narcolepsy-cataplexy classified as a disability has been raised with the Department of Health and the issues involved will be examined prior to any proposals being formulated.

The Minister for Health is preparing a memorandum for Government which will set out the full response to this issue and will detail the supports for the affected children, adolescents and their families. It is intended to submit it as soon as practicable.

I want to assure the House that the Minister is treating this issue as a matter of priority as he is aware of the difficulties which both the children affected and their parents are experiencing.