Dáil Éireann Debate, Tuesday - 17 January 2017
814. Deputy Jackie Cahill asked the Minister for Health his plans to ensure that a centre of excellence is established in Saint James' Hospital in 2017 for sufferers of unique narcolepsy disorder; if funds will be set aside and ring fenced for that centre of excellence; and if he will make a statement on the matter. [41056/16]
Amharc ar fhreagra817. Deputy Margaret Murphy O'Mahony asked the Minister for Health the status of the planned national narcolepsy service centre at St James's Hospital and its inclusion in the 2017 HSE plan; and if he will make a statement on the matter. [41066/16]
Amharc ar fhreagra903. Deputy Michael Healy-Rae asked the Minister for Health if he will address the concerns of narcolepsy sufferers here (details supplied); and if he will make a statement on the matter. [41281/16]
Amharc ar fhreagra922. Deputy John Lahart asked the Minister for Health his plans to provide funding to narcolepsy units within the HSE for children that have just turned 16 years of age or are due to turn 16 years of age, suffering from narcolepsy due to the pandemrix vaccine; and if he will make a statement on the matter. [41304/16]
Amharc ar fhreagra971. Deputy Róisín Shortall asked the Minister for Health the status of the provision of a sleep clinic for a group of persons suffering with narcolepsy (details supplied); if funding will be provided for the provision of this clinic; his views on the situation whereby Ireland is one of the only countries in Europe without a dedicated sleep clinic; and if he will make a statement on the matter. [41427/16]
Amharc ar fhreagra1000. Deputy Thomas P. Broughan asked the Minister for Health his plans to provide the necessary funding to fully staff the national narcolepsy and sleep disorder service in St. James’s Hospital; the supports his Department will provide to families of children and young adults who developed narcolepsy when they were given the swine flu vaccination in 2009/2010 in view of the fact they now begin to transition to adult services; and if he will make a statement on the matter. [41481/16]
Amharc ar fhreagra1002. Deputy Denise Mitchell asked the Minister for Health if there is extra funding being made available for the narcolepsy and sleep disorder service at St James's Hospital; and if he will make a statement on the matter. [41492/16]
Amharc ar fhreagra1007. Deputy James Lawless asked the Minister for Health if he will provide funding for the completion of the recruitment and staffing of the national narcolepsy and sleep disorder service in St. James's Hospital, Dublin 8, with particular need to assist those involved with a group (details supplied); and if he will make a statement on the matter. [41528/16]
Amharc ar fhreagra1039. Deputy Sean Fleming asked the Minister for Health when funding will be provided for the new national narcolepsy disorder service, to be provided in St. James's Hospital, Dublin for victims of the swine flu vaccine who are represented by a group (details supplied); and if he will make a statement on the matter. [41745/16]
Amharc ar fhreagra1116. Deputy Billy Kelleher asked the Minister for Health the status of the funding of the centre of excellence for narcolepsy and sleep disorders at St James's Hospital; and if he will make a statement on the matter. [41894/16]
Amharc ar fhreagra1269. Deputy Anne Rabbitte asked the Minister for Health the data his Department gathered and the findings it has made regarding the side effects of swine flu vaccine on adults and children; if he met a group (details supplied); if not, if he will facilitate a meeting; and if he will make a statement on the matter. [1506/17]
Amharc ar fhreagra1270. Deputy Anne Rabbitte asked the Minister for Health the plans of the HSE to fund a national narcolepsy service (details supplied); and if he will make a statement on the matter. [1507/17]
Amharc ar fhreagra1282. Deputy Dara Calleary asked the Minister for Health if funding will be made available for the completion of recruitment and staffing for the national narcolepsy and sleep disorder service in St James's Hospital, Dublin. [1541/17]
Amharc ar fhreagra1349. Deputy Louise O'Reilly asked the Minister for Health if funding for St James's centre, for persons that attend St James's Hospital with narcolepsy, will be cut; and if he will make a statement on the matter. [1921/17]
Amharc ar fhreagraI propose to take Questions Nos. 814, 817, 903, 922, 971, 1000, 1002, 1007, 1039, 1116, 1269, 1270, 1282 and 1349 together.
As part of Ireland's response to the pandemic (H1N1) 2009 the National Public Health Emergency Team, following advice from the Pandemic Influenza Expert Group recommended that vaccination against pandemic influenza would be provided to all citizens. Following reports of narcolepsy among children and adolescents who were vaccinated with Pandemrix in Ireland, a National Narcolepsy Study Steering Committee was established to conduct a retrospective population based study in relation to the Irish data. This Committee comprised expertise in the areas of epidemiology, neurology, paediatrics and paediatric neurology.
The study found that there was a 13 fold higher risk of narcolepsy in children/adolescents vaccinated with the pandemic (H1N1) 2009 vaccine compared with unvaccinated children/adolescents. The development of narcolepsy following pandemic vaccination is not a uniquely Irish issue. The results from the Irish data concur with those observed in Finland and Sweden.
As of 16 January 2017, the Health Products Regulatory Authority (HPRA) has received 81 reports with clinical information confirming a diagnosis of narcolepsy in individuals who were vaccinated with Pandemrix (80) and Celvapan (1). The majority of these reports relate to children/adolescents (latest numbers).
My Department, the HSE and the Department of Education and Skills continue to work together to provide a wide range of services and supports for those affected by narcolepsy following the administration of pandemic influenza vaccine.
The HSE's Advocacy Unit acts as liaison with service and support providers and other Government Departments to facilitate access to required services. It is in regular contact with individuals affected and regularly meets with representatives of the SOUND (sufferers of unique narcolepsy disorder). Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services.
The ex-gratia health supports include clinical care pathways to ensure access to diagnosis and treatment, multi-disciplinary assessments led by clinical experts, counselling services for both the individuals and their families, discretionary medical cards for those who have been diagnosed have been provided to allow unlimited access to GP care and any prescribed medication, ex-gratia reimbursement of vouched expenses incurred in the process of diagnosis and treatment, including travel expenses for attending medical appointments; physiotherapy, occupational therapy assessments, dental assessments and dietary services all on a needs basis.
Work is underway on the proposed Centre of Excellence for Narcolepsy based in St James's Hospital which will cater for all people diagnosed with narcolepsy, including those diagnosed with narcolepsy after receiving pandemic influenza vaccine. In relation to the queries raised by the Deputies, as these are service issues, I have asked the HSE to reply to you directly.
