Written answers

Thursday, 23 February 2017

Photo of Eoin Ó BroinEoin Ó Broin (Dublin Mid West, Sinn Fein)
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355. To ask the Minister for Health further to Parliamentary Question No. 441 of 14 February 2017, when the centre of excellence for narcolepsy based in St. James's Hospital will open; when the pathway for the transition from children's to adult services will be provided; the reason for the delay in these facilities opening; the funding that has been allocated for this project in the current Health Service Executive service plan; the supports that will be available for persons over 16 years of age to make the transition to adult services in the absence of these facilities; and if he will make a statement on the matter. [9518/17]

Photo of Eoin Ó BroinEoin Ó Broin (Dublin Mid West, Sinn Fein)
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357. To ask the Minister for Health his views on post pandemrix diagnosis of narcolepsy in children that received the vaccine; the number of such cases that have been drawn to his attention; if the State accepts liability for the full medical and education needs that these children now have as a result of the vaccine; and the additional budget allocation that has been made to the overall funding of narcolepsy specific services to cater for the increase need arising from the side effects of the vaccine [9521/17]

Photo of Eoin Ó BroinEoin Ó Broin (Dublin Mid West, Sinn Fein)
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359. To ask the Minister for Health the supports his Department provides for families of children that suffered post pandemrix diagnosis of narcolepsy; and if no such supports exist to assist families deal with the stress of their situation, if consideration will be given to providing such supports [9523/17]

Photo of Eoin Ó BroinEoin Ó Broin (Dublin Mid West, Sinn Fein)
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360. To ask the Minister for Health when he will meet with a group (details supplied); when he last received an invitation from this group to meet; and the reason he has not met the group since becoming Minister [9524/17]

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
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I propose to take Questions Nos. 355, 357, 359 and 360 together.

As of 6 February 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.

The cost of these supports provided by the HSE is a service matter and I have asked the HSE to reply directly to the Deputy.

As of 6 February 2017, 53 individuals have begun the process of taking legal proceedings against the Minister, the Health Services Executive and GlaxoSmithKline Biological SA. Of these, 34 have initiated formal legal proceedings. The plaintiffs allege personal injury in which they claim the development of narcolepsy (cataplexy) resulted from the administration of the H1N1 pandemic vaccine. On 15 October 2013 the management of the cases transferred to the State Claims Agency when the National Treasury Management Agency (Delegation of Claims Management Functions) (Amendment) Order 2013 came into effect. It would be inappropriate for me to comment further on matters relating to liability which may impact on this ongoing litigation. In spite of this litigation, my Department, the HSE and the Department of Education and Skills will continue to work together to provide the services and supports on an ex gratiabasis.

As Deputies are aware, 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. It is not possible to give an exact date for the opening of the centre at this time and I have asked the HSE to reply directly to the Deputy with an update on the current position.

I am aware that representatives from SOUND have requested a meeting and arrangements are being made for officials from my Department and the HSE to meet with representatives from SOUND in the near future.

Photo of Eoin Ó BroinEoin Ó Broin (Dublin Mid West, Sinn Fein)
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356. To ask the Minister for Health the total number of persons under 16, over 16 and over 18 years of age diagnosed with narcolepsy here each year from 2009 to 2016; the total funding available for dedicated supports for these persons for each year from 2009 to 2016; and if he will make a statement on the matter. [9519/17]

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
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As this is a service matter, it has been referred to the Health Service Executive for attention and direct reply to the Deputy.

Photo of Eoin Ó BroinEoin Ó Broin (Dublin Mid West, Sinn Fein)
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358. To ask the Minister for Health if he will provide a breakdown on annual diagnoses of persons with narcolepsy from 2008 to 2016 with a further breakdown by age (details supplied) in tabular form. [9522/17]

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
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As this is a service matter, it has been referred to the Health Service Executive for attention and direct reply to the Deputy.

Comments

Anne Neville
Posted on 27 Feb 2017 7:25 pm (Report this comment)

Looking Forward to Meet with Minister Harris Thank you Eoin O Broin

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