Written answers
Tuesday, 7 February 2017
Department of Health
Hospital Services
Michael Healy-Rae (Kerry, Independent)
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425. To ask the Minister for Health his plans to fund a public centre of excellence for narcolepsy based at St James's Hospital, Dublin; and if he will make a statement on the matter. [5689/17]
Niamh Smyth (Cavan-Monaghan, Fianna Fail)
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459. To ask the Minister for Health the status of a unit (details supplied) at St James's Hospital; if funding is still in place for this unit; the timeframe for its delivery; the status of the hiring of the multidisciplinary team and specialists; and if he will make a statement on the matter. [5967/17]
John Curran (Dublin Mid West, Fianna Fail)
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463. To ask the Minister for Health if he or the HSE will make funding available to specifically establish a national service for narcolepsy in St James's Hospital, Dublin; and if he will make a statement on the matter. [5999/17]
Simon Harris (Wicklow, Fine Gael)
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I propose to take Questions Nos. 425, 459 and 463 together.
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. The HSE has indicated that a business case, including a funding requirement of €1.6 million, was submitted as part of the estimates process. In relation to allocation of resources by the HSE, I have asked the Executive to reply directly to the Deputies.
Barry Cunningham
Posted on 14 Feb 2017 4:18 pm (Report this comment)
Minister,
Thank you for the reply but it is yet another stock answer to a series of recent questions raised by TDs/Senators who have been contacted by affected constituents.
We have been asking and lobbying since well before Christmas to allocated funding. We found outr from a reply by your colleague Marcella Corcoran Kennedy that there is no funding this year.
She said 'It is a priority for the Department of Health and the HSE that the individuals and families affected by narcolepsy receive appropriate health and social care supports.'
With no funding for the facility in St. James' Hospital there is no progress.
The 'ex-gratia' services are hit and miss, poorly communicated to families - we aare still finding discrepancy of service delivery to affected children and adults.
We tend to see progress when we 'shout' about it but bar one person from the HSE Advocacy Unit there has been no proper contact with SOUND - the support group for people affected by Pandemrix Narcolepsy.
These children and young adults don't just fall asleep. The horrifically vivid night terrors ensure fitful sleep, the complete loss of muscle control at highly emotional moments is debilitating. There is much more and all of it caused by the state allowing an untested flu vaccine to be administered.
We have no voice in the HSE, no focal point. There are wonderful individuals in Temple St, St. James and others but there is no co-ordinated approach to helping this group of people.
We want to make our case to you so we can outline what our children need.
Will you help us?
Father of Pandemrix Narcolepsy victim.