Dáil debates

Thursday, 9 February 2017

Topical Issue Matters

Hospital Services

5:45 pm

Photo of Marcella Corcoran KennedyMarcella Corcoran Kennedy (Offaly, Fine Gael) | Oireachtas source

I thank Deputy Rock for giving me this opportunity to update the House on this very important issue. Narcolepsy is a chronic brain disorder and people with this disorder experience periods of extreme daytime sleepiness and sudden, irresistible bouts of sleep that can strike at any time. These sleep attacks usually last from a few seconds to several minutes.

I acknowledge the impact on the 1,500 to 1,600 patients with narcolepsy in Ireland. Narcolepsy can greatly affect daily activities. People may unwillingly fall asleep while at work or at school, when having a conversation, playing a game, eating a meal or, most dangerously, when driving or operating other types of machinery. In particular, I am aware of a specific group of individuals who claim to have developed narcolepsy as a result of receiving the Pandemrix vaccine during the 2009 influenza pandemic. Many of this group were children at the time of their diagnosis.

As many of the patients are now becoming adults, there have been calls from advocacy groups recently for the setting up of a centre of excellence for narcolepsy based in St. James's Hospital, which would include a nurse specialist, a dietary service, a psychological service and a full service between St. James's Hospital and the children's hospitals.

A business case for a service for adults with narcolepsy was submitted by St. James's Hospital as part of the overall 2017 Estimates process. St. James's Hospital is part of the Dublin Midlands hospital group. Any proposals for the funding for the narcolepsy clinic in St. James's Hospital have to be considered as part of the hospital group's overall priorities for services across the group and with regard to resources available. While no developmental moneys have been allocated for this proposal in the HSE's national service plan for 2017, I understand that work is under way on the proposed centre of excellence.

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. Therefore, my Department engaged with the HSE, the Department of Education and Skills and the Department of Social Protection to ensure the provision of a range of services and supports on an ex gratiabasis.

The HSE's advocacy unit acts as a liaison with other service providers and Departments to facilitate access to required services. It is in regular contact with the individuals affected. Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services.

The ex gratiahealth supports include clinical care pathways to ensure access to rapid diagnosis and treatment; multidisciplinary assessments led by clinical experts; counselling services for both the individuals and their families; discretionary medical cards for those who have been diagnosed to allow unlimited access to general practice care and any prescribed medication; ex gratiareimbursement of vouched expenses incurred in the process of diagnosis and treatment; and physiotherapy, occupational therapy assessments, dental assessments and dietary services all on a needs basis.

I again acknowledge the impact on the lives of these people and their families affected by narcolepsy and reiterate my commitment to the ongoing provision of appropriate services and supports.


Barry Cunningham
Posted on 14 Feb 2017 4:12 pm (Report this comment)

Dear Marcella,

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. Your reply is how we found out there was none.

You say '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 and the Minister so we can outline what our children need.

Will you help us?

Father of Pandemrix Narcolepsy victim.

Anne Neville
Posted on 17 Feb 2017 1:41 pm (Report this comment)

Well said Barry. A meeting with the Minister for Health is very important for our children and for our young adults, who are struggling with exams or getting up for college in the mornings as they are no longer living at home depending on flat mates to give them a call in the mornings to attend lectures and also may I add that the flat mate keep a watchful eye on there health as it is a auto immune disease so they can become very ill very quickly, and you are correct in saying that the services we getting are very hit and miss, we are depending on other members to tell us of what they have received for their children and then we go seeking it out for ours, is the minister aware that some children are struggling taking meds to improve their lives.

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