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A GROUP REPRESENTING those suffering from unique narcolepsy disorder has organised a march in Dublin today to the Department of Health over the failure by government to put supports in place a year after a commitment by the minister to do so.
Sufferers of Unique Narcolepsy Disorder (SOUND) will walk from St Stephen’s Green Park to the Department of Health at Hawkins House at 1pm today, where representatives will hand over a letter addressed to Minister for Health Dr James Reilly.
The group represents 54 children, adolescents and adults diagnosed who have the disorder as a result of vaccination with swine flu vaccine Pandemrix, which was given as part of a State sponsored and promoted campaign.
The action today, takes place on the anniversary of the release of a report by the National Narcolepsy Steering Committee, which found that there was “a significant 13-fold higher risk of narcolepsy in vaccinated compared to unvaccinated individuals”.
Following the publication of the report, Reilly said that a package of supports would be brought to government for approval prior to the summer recess last year.
Now a year since the report was published, children and young adults who developed narcolepsy as a result of vaccination with Pandemrix, have no permanent support package in place and SOUND said the Minister for Health “refuses to meet with parent representatives to advise why the delay has been encountered and what the eventual package might comprise”.
In the letter, which will be handed into the department today, SOUND provides a list of suggestions for supports. They include an awareness campaign for medical professionals and the public, access to rapid diagnosis, a special services medical card, continuing educational supports, access to new drugs treatments and compensation.
The group is also calling for official recognition of narcolepsy as a disability so that members cannot be discriminated against in the workplace and will be entitled to Disability Allowance if they are forced to stop working.
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Trade Unions played a pivotal role in the collapse of this economy 10 years ago. Have we not learned any lessons?
@Brian O’Leary: it was the bankers and regulators.
@David Dickson:
True, but there is plenty of blame to go around.
@David Dickson: the banks and politicians where also responsible but alot of other groups played a large part including the unions
@Brian O’Leary: No but FAS sure did is there any sign of Fas being reimbursed for the losses it occurred !
@Brian O’Leary: Yes, absolutely, how dare companies, who make huge profits not share that wealth with the back bone of the company it’s workers, absolute disgrace, it was the nurses going on strike looking for better pay and conditions that played a pivotal role in the collapse of the economy, certainly wasn’t the banks, if it was, it only played a small role.
@Brian O’Leary: benchmarking, partnership agreements etc all driven by the unions in one direction up. It made the public sector the best paid and argueably least efficient in Europe.
8% pay rise and now profit share union greed alive and well
@Brian O’Leary: And the Irish economy is centrally controlled by a consortium of Lizard People. I said it on the internet so it must be true, yes?
@Brian O’Leary: No they didn’t. It was a banking issue caused what the former head f the Fed politely called “irrational exuberance “
And when the airline goes through a period of decline and profits are hit will the employees take a pay cut to support the company through the rough time? I always thought a share of the profits was the wage packet I.e. a job!
@Steve Smith: “I always thought a share of the profits was the wage packet I.e. a jib!”…tell that to the managers and execs who get perks, bonuses, share options, free shares and pension top ups.
What’s wrong with “Gain Sharing” – why hold a company in a cyclic industry to ransom with potential stoppages. Would they accept a pay cut if or when the company made a loss, fuel prices went up, exchange rates presented losses, trade wars diminished load factors ?
if the workers want a share of the profits then just buy shares in the company. You get all the profits and all of the losses but hey you can’t have your cake and eat it
The union bosses get free first class travel on all Arr Lingus flights with their families and stay in Aer Lingus hotels. I think it is only the head each Union. I say “All for one and One for all”. The boss of the union won’t give up his wages when he calls for strike action.
They should outlaw unions especially in the civil service and transport companies.
@Cranky: bs
Wtf is it with transport workers and strikes? Luas, bus, taxi, air traffic controllers, baggage handlers, pilots, cabin crew…
@James Gorman: don’t forget the train drivers too James. All holding the country to ransom
@James Gorman: We should introduce legislation as in Italy.
Illegal to strike peak holiday seasons, Easter, Summer, Christmas etc.
Now there’s a challenge for a Transport Minister that might enhance the life of the Irish public.
@Declan Moran: “Holding the country to ransom” = “I disagree with their politics”. The only rational explanation for why this magical phrase is never applied to companies which threaten to move abroad and take their jobs with them any time there’s the threat of a tax hike.
Try to check in at Dublin Airport Terminal 2 with AerLingus’ it’s now all automotive and a nightmare.
Best paid PS workers in Europe during the bust…
Dammit I just booked an Aer Lingus flight to avoid strikes at Ryanair. Can’t they wait and take turns acting like *****.
have your say