I thank the Senator for raising this important issue. 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. There are 32 children and young adults who are known to have developed narcolepsy after receiving the H1N1 influenza vaccine and I would like to update Senators on the developments since this issue was raised in this House last March.
The report of the national narcolepsy steering committee was published on 19 April and is available on the Department of Health website. The study found an increased risk of developing narcolepsy in people aged between five and 19 who had received the Pandemrix vaccine compared with those who had not received that vaccine. As Senators may be aware, the Minister for Health has met SOUND, Sufferers Of Unique Narcolepsy Disorder, on a number of occasions, the most recent being in July. A grant aid agreement under section 39 of the Health Act 2004 was put in place and funding of €9,500 has been made available to them.
A number of supports have been put in place since last March by the health and educational services, on which I would like to update Senators. The incident management team chaired by the director of advocacy is co-ordinating the work carried out in the HSE and liaising with the Departments of Health and Education and Skills to ensure that necessary supports are being provided. The advocacy unit is also liaising with SOUND on an ongoing basis. Four regional narcolepsy co-ordinators were designated to liaise with children and their families at local level. The HSE has begun a multidisciplinary needs assessment of the children and young adults affected. The multi-disciplinary assessments will allow appropriate health and educational supports to be put in place for them. Occupational therapy, psychology assessments and counselling have been made available to children diagnosed with narcolepsy. Family counselling has also been made available. So far, 22 discretionary medical cards have been issued to those affected by narcolepsy and 28 claims for the reimbursement of medical expenses have processed to date. Special educational needs organisers are working with parents to ensure additional supports required in school are made available following assessment of need.
One of the initial priorities was to provide appropriate supports for those doing State exams. Accommodation was made by the Department of Education and Skills for any children with narcolepsy who were sitting exams, with extra time being allowed and home tuition provided in the lead up to exams. The Department of Health will consider all other possible supports which may need to be put in place for those affected. The Minister is preparing a memorandum for Government which will set out the full response to this issue. It is intended to submit it as soon as practicable.
I thank the Senator for raising this issue and assure him that the Minister is treating it as a matter or priority.
