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'How sick does my child have to be?' - Campaign calls for medical cards for all seriously ill children

Those launching the campaign said they will maintain a presence outside Government Buildings until legislation is changed.

A CAMPAIGN IS being launched today, calling for the government to change legislation to automatically entitle any child with a serious illness to a full medical card.

Stories have emerged recently of a number of children across the country with serious illnesses or congenital conditions who have either lost their cards or been frequently asked to renew them and then left waiting for months for approval.

Peter Fitzpatrick, whose niece Louise Shortall was diagnosed with Leukemia in 2012, is spearheading the campaign, along with the eight-year-old girl’s father, Kevin.

The girl’s parents had to apply four different times for temporary cards in the 19 months it took to get approval from the HSE. During that time, Fitzpatrick said documents were lost and at one stage the family was issued with ten ‘GP only’ cards for Louise, despite the fact that she was seeing a consultant at Crumlin hospital and not her GP.

“Tracy, her mother, went to the pharmacy with one of the temporary medical cards and was told that wasn’t valid,” Fitzpatrick said. “She burst into tears – she needed the medication for her daughter and she was given no prior notice that the card was going to be cancelled because they were issuing these GP only cards.”

One time they called and asked to speak to Louise personally – Louise is eight and she has Leukemia so she wasn’t really in a position to talk. There’s so little understanding of what the family is going through or the illness itself.

Fitzpatrick said he decided to try to raise awareness of the problem because he feels parents dealing with it don’t have a voice or time to raise awareness of the issue.

“Parents have nothing left after dealing with the emotional stress at home and they’ll often get the card in the end but they have to go through this fight,” he said. “We’ve had hundreds of emails from parents saying they’re so happy we’re doing this because they don’t have the time to leave their child and get involved.”

The Our Children’s Health campaign, which will be launched this afternoon, calls for automatic and full eligibility for health services should a child be diagnosed with a serious illness or congenital condition and a change in the Health Act of 1970 to legally underpin this. It is also calling for a fundamental re-evaluation of health policy in Ireland so that full eligibility is granted on the basis of medical need and not financial means.

“It’s when you’re marginally over the means that the HSE’s discretion kicks in and they also take into account your medical and social circumstances,” Fitzpatrick said. “You’re left wondering “how sick does my child have to be before you use your discretion and say we are a deserving case?”".

A website and online petition will be launched today with a pledge by organisers to maintain a presence outside Government Buildings every morning the Dáil is in session, indefinitely.

Read: ‘They took the medical card from our little girl. She has Cerebral Palsy and may never walk’>

Read: Mother was asked by the HSE if her son ‘still had Down syndrome’>

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56 Comments
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    Mute Stephen Duggan
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    May 20th 2014, 6:50 AM

    Children,the disabled,mentally ill and the elderly are the groups in any civilized society that should always come first,in any circumstances. NO EXCEPTIONS !!!

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    Mute Joe Harbison
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    May 20th 2014, 7:44 AM

    What about Tony O’Reilly, 78 years and a net worth of €120 million. I suspect he can afford the €144/ month maximum under the refundable drugs scheme. Should he not be an exception? This is the problem with rhetorical statements like yours. Gets load of green thumbs but the fact is that in shouting ‘NO EXCEPTIONS’ what you mean is that quite a few families, including mine, who are able to pay for medications will get them for free, but we’ll have to cut back on treatments for others, buying new equipment, replacing staff, closing health services, prolonging waiting lists etc, etc, etc It’s what health economists call ‘opportunity costs’ and it’s something opportunistic politicians ignore until they’re asked to run the health service.
    We’re still spending €11 billion per year more than we’re raising. I don’t mind spending money on my kids medicines if we can avoid handing each of them thousands of quid in debt to prevent them having a future in this country.

    35
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    Mute Paul Radford
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    May 20th 2014, 7:46 AM

    Our Daughter Sarah is 4 and Down Syndrome And yesterday the pharmacist told me her medical card was gone.
    No warning
    No reason
    No notification

    Really , what is wrong with these people?

    133
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    Mute Kerry Blake
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    May 20th 2014, 8:03 AM

    @ Joe your lucky that you can afford the medical costs many cannot and I see no need for those parents need to be stressed out about if they can keep their medical card or not.

    Is that €11 billion you refer to the €11 billion we are paying per annum in interest for this famed bailout? Borrowing to pay for borrowing a recipe for disaster….

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    Mute Anne Marie Devlin
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    May 20th 2014, 8:23 AM

    @Joe. The likes of Tony O’Reilly are few and probably don’t avail of medical cards, free bus passes etc. Putting in an income threshold inevitably hurts those in the middle and allows successive governments to lower the threshold thus punishing those who have worked all their lives and paid into the system.

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    Mute Joe Harbison
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    May 20th 2014, 8:30 AM

    Wait a second, the argument is that all children, elderly and those with chronic medical conditions should receive free care. I think that all children, elderly and those with chronic medical conditions who can’t afford to pay should receive free care. People who can afford to make a contribution should and then we can make the health budget stretch further. Common sense no?

    31
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    Mute ColindeB
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    May 20th 2014, 8:40 AM

    43% of people in this state have medical cards. Either we’re the sickest people in the world or ZANU FF have been handing out too many goodies that cannot be afforded and it needs to be rolled back.

    16
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    Mute Stephen Duggan
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    May 20th 2014, 9:23 AM

    Health and education should always come first. I don’t care if Tony O’Reilly has 120 billion or million he is 78 and deserves to be treated like any other 78 yr old. Joe you say you can afford to pay for medicines ,fair play to you,pay for them so,I have no issue with that. If the debacle that is children’s allowance was sorted out,i.e. it was means tested the 100′s of millions saved could sort this sorry mess out. IMO an easy and quick fix to the problem . I stand by what I said tho,the four groups I mentioned should get special care and attention in any civilized society,regardless of wealth. If we go by your model well then the families of severely handicapped children or people with severe mental health problems should have to pay if they are wealthy ? That is neither fair nor honest in a civilized society. As the old saying goes “your wealth is your health”, just because you have wealth or not does not mean your child or elderly adult should be afforded poor or inadequate heath care. One last question for you Joe,have you kids ? If so did you claim childrens allowance for them ? If you did then why ? I mean you claim to be wealthy . Methinks that your argument is a contradiction in terms. You’ll give with one hand but take it back with the other. As for TO’R for the amount of jobs and enterprise he created in this country the least the country can do is look after him in his old age,just like we should all our OAP’s.

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    Mute Joe Harbison
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    May 20th 2014, 9:36 AM

    So what do we cut to provide free care? The well is empty, beyond empty. We’re borrowing on our kids futures 8-9 billion per year before we pay for the bank debt. We’re cutting services not covering maternity leave, letting waiting lists go. You fell, however, that the priority in 2014, is to give free treatment to those who are well able to afford it. You need to consider that the real cost of this is denying treatment to others.

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    Mute Stephen Duggan
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    May 20th 2014, 9:47 AM

    Joe you never answered my question about childrens allowance,why not ?

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    Mute Joe Harbison
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    May 20th 2014, 10:06 AM

    I think the children’s allowance should be taxed as the income it is but it’s rather off topic. Back to topic, I work on the front line in the health service and see the cuts striking deeper and deeper day after day. If we have extra money for the health service it should not be given to people, like me, well able to pay for elements of their care.
    What is the point in paying for courses of antibiotics or inhalers for the children of people who earn lots of money and then having them wait 2 or 3 years to see a specialist OT (that can really only be provided by a Public Health Service) in the community.
    If your kid, god forbid, gets cancer or needs major surgery then the health service will rightly provide and pay for that because the cost of such treatment would be a burden to anyone. But kids are waiting for major surgery because we don’t have the resources to pay for it. Let those who can contribute, contribute.

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    Mute Trisha Brennan
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    May 20th 2014, 6:37 AM

    It’s sickening to think that while seriously ill/disabled children and adults are being denied a medical card, Enda is giving the likes of the GAA €30 million. This government is a joke.

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    Mute Joe Harbison
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    May 20th 2014, 7:49 AM

    I’m not a GAA supporter but I think the idea is that the GAA is a major provider of sports, recreation, exercise and physical fitness to a younger population who are storing up a load of problems through obesity and immobility. From a health point of view it may actually be money well spent as it’s only €8 per person per annum, which from the health budget point of view isn’t a lot.

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    Mute Wang Zhuo
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    May 20th 2014, 8:41 AM

    Even just 1euro from taxt pay I still want it use on children and poor people not bloody GAA.
    You sick mind.

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    Mute Deirdre Meredith
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    May 20th 2014, 9:18 AM

    Joe do you know how much is giving from the government for research into
    children’s cancer in this country it’s 0

    11
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    Mute Joe Harbison
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    May 20th 2014, 9:26 AM

    Yes I actually do know, but the purpose of a health service is both to treat disease but also to promote health I.e. Stop disease happening in the first place. Denis Burkitt, the greatest children’s cancer specialist this country ever produced said it best. ‘Its better to build a fence at the top of a cliff than park an ambulance at the bottom’.

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    Mute Trisha Brennan
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    May 20th 2014, 9:58 AM

    Last year’s GAA revenue: €54.6 million. Yes, keeping active is part of staying healthy, but what about the children and adults who can’t participate in sport due to a disability or life limiting illness? We’re not talking about taking a medical card away from someone who is morbidly obese and who, with the right help and support, can do something. We’re talking about medical cards being taken from children with Downs, with Cerebral Palsy, from adults fighting cancer or Cystic Fibrosis. You can promote healthy living, but it’s of no use to someone who physically cannot get out of bed or is on long term medication.

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    Mute Deirdre Meredith
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    May 20th 2014, 10:04 AM

    Joe So your saying children’s cancer is preventable that once they lead a healthy lifestyle they won’t get cancer 30 million to sports and 0 to illnesses that maybe a child won’t grow up to patcipate in

    8
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    Mute Joe Harbison
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    May 20th 2014, 10:14 AM

    The cancer budget in this country is enormous. One breast cancer drug herceptin alone cost us about €25 million last year. Cancer treatment takes a huge chunk of health service spending and cancer research takes a huge share of health research funding. So much so that the Wellcome trust no will not fund cancer studies. It’s not a case of ‘if you spend money on prevention you can’t spend money on cancer’ you need to spend on both. And yes actually, physical activity will help prevent some cancers as well as heart disease and stroke the two other major killers in Ireland.

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    Mute Deirdre Meredith
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    May 20th 2014, 10:34 AM

    Joe I was talking about children with cancer not adults some children are diagnosed as young as 12 weeks old as a case in our family so your saying that this baby didn’t lead a healthy enough lifestyle so that’s why she got cancer and as a family were told that this child’s cancer wasn’t important enough that any fundraising done by us would go into a more important cancer like breast cancer research all I am saying Joe these families shouldn’t have to spend their time filling out forms if their children are ill they should automatically get the medical card as I say spend a day with these families walk in their shoes see their cost and their worry

    5
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    Mute Joe Harbison
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    May 20th 2014, 10:47 AM

    Where did I say that? Just incidentally cancer care is more or less free to children whether you have the medical card or not with the exception.of inpatient charge. A course of chemo will cost the state anything up to €100k (even more for some cancers), 99% of the cost will be taken by the state if you have no insurance or no medical card. There’s no argument about the payment for these and no threat to them.
    If however your child has an eating disorder, or needs OT or orthodontics you’ll wait years or even forever if you can’t pay for them yourself even if you have a medical card because the services simply don’t exist. So let’s ask people to contribute where they can for everyday care so we can afford to keep paying for cancer and provide important services that aren’t available

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    Mute Joe Harbison
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    May 20th 2014, 11:12 AM

    Oh and Deirdre, go to the SFI and HRB websites and check them out. You’ll see that the amount spent on cancer research is considerably more than 0

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    Mute Deirdre Meredith
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    May 20th 2014, 11:26 AM

    Is it Joe is it it’s free in between treatment one item on my nieces prescription cost 100 euro that’s without other items on the prescription they also had the cost of travelling up to our lady’s hospital for five days for each chemo cycle from the country so that’s the cost of petrol for travelling up and down for five days then some of these families have other children to feed have to pay for childcare having to take time off work so there is loss of pay so without their medical card how are they to pay for prescriptions

    6
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    Mute Deirdre Meredith
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    May 20th 2014, 11:39 AM

    I never said that 0 was spent on cancer research I said the government give 0 towards children’s cancer research I may be wrong and it’s my bad if I am and I really pray if you have kids it never crosses your door and you have to walk in these families shoes

    6
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    Mute Joe Harbison
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    May 20th 2014, 11:48 AM

    But the Medical card wouldn’t cover petrol or accommodation even if they had it. Maximum cost for medication is € 144 per month under the RDS. Most chemo is excluded from all payment under the high tech drugs scheme. So with respect you acknowledge that your relative rightly received the bulk of treatment for free. You’re annoyed that they didn’t receive all their treatment and expenses covered. Deirdre there is a limited budget and there is no such thing as ‘free treatment’. It all has to be paid for and I’m unfortunate to care for a whole bunch of patients who don’t get basic services they need in hospital (because there’s no money) and then get put in Nursing Homes where they lose their savings and much of the value of their houses to pay for it.

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    Mute Deirdre Meredith
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    May 20th 2014, 12:39 PM

    Joe I am no thick I know the medical card doesn’t cover petrol or accommodation and I acknowledge that she received the best treatment in our lady’s and the only thing I am angry at is that’s she had cancer at all but what you have got to realise and I don’t think you do is the financial and emotional strain it has on families as I say spend a day in their shoes and see.

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    Mute Joan Featherstone
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    May 20th 2014, 6:55 AM

    Medical cards should be given on need rather than income…and this twit proposes giving free GP care to all under six! Really needs to go back to the drawing board, it’s absolutely disgraceful what’s going on!

    96
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    Mute Joe Harbison
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    May 20th 2014, 7:51 AM

    Medical cards should be given on both need AND income. If you give something free to someone who can well afford it, you end up not giving something to somebody who really needs it.

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    Mute Jane Travers
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    May 20th 2014, 8:54 AM

    Agreed, Joe. It should be assessed on the basis of proportion; anyone whose ongoing medical needs would cost more than, say, 5% of their disposable income should receive a card.

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    Mute Deirdre Meredith
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    May 20th 2014, 9:12 AM

    Well I don’t think if these families could afford it they would be fighting for the medical card and realistically they would rather their children be well than been sick don’t you.

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    Mute Joe Harbison
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    May 20th 2014, 9:31 AM

    I’ve seen people earning €100k + per year fight tooth and nail to keep their ‘gold plated’ medical card. The state has an obligation to make sure that funding goes to the people who need it and can’t afford it. If that means frequently checking eligibility the it’s unfortunate but necessary.

    5
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    Mute Peter Fitz
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    May 20th 2014, 7:32 AM

    Please Log on to http://www.ourchildrenshealth.ie and sign the petition. We need all your support if we are to have any chance of changing this. Many thanks, OurChildrensHealth.ie.

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    Mute ohmadge85
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    May 20th 2014, 7:43 AM

    Best of luck Peter, thank you for doing what others cannot

    27
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    Mute Kerry Blake
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    May 20th 2014, 8:07 AM

    Done. Well done Peter we need more people like you in this country willing to stand up and speak out in defence of our children.

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    Mute Susan Carabine
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    May 20th 2014, 8:57 AM

    Signed & shared Peter, best of luck

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    Mute conor hickey
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    May 20th 2014, 6:56 AM

    Disgraceful mismanagement of our health system.
    Get Reilly out.

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    Mute Joseph O'Regan
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    May 20th 2014, 7:21 AM

    The HSE is the greatest money wasting parasite ever created.

    41
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    Mute Patitas
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    May 20th 2014, 7:07 AM

    UN intervention! The HSE management must be brought to court due to humans right violation. Shame, shame, shame!

    35
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    Mute Joe Harbison
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    May 20th 2014, 7:56 AM

    Really……. A bit of perspective here. You need to spend some time in Africa where kids are dying for lack of vaccines worth 20c. It’s a human rights violation that before a state provides something for free, that they check first if the person can contribute to the cost.

    18
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    Mute James Gorman
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    May 20th 2014, 7:11 AM

    Serious lack of knowledge out there on this subject. No mention of whether these kids have a Long Term Illness Card which gives free medication and appliances for the prescribed condition. Also whether they have health insurance or are paying the public charge for first ten days. I would like to see the full detail on some of these cases including the gross household income. Then it would be easier make a fair judgement. As it stands it makes sad headlines which may not be full story in many cases. If we want to increase the number of card holders we have to remember who is paying for them – us.

    34
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    Mute Deirdre Meredith
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    May 20th 2014, 8:00 AM

    Seriously James why don’t you pop up to St John’s ward in our lady’s hospital and ask these parents that question and see the response you get ask them how much the medication is the cost of travel ,accommodation how much pay they lose when they have to take time off work. Bills don’t go away when a child is sick.

    36
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    Mute Lily
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    May 20th 2014, 8:06 AM

    My daughter has medical insurance yet hospital stays still indirectly cost a fortune.

    Say you pay the public charge on top of that you have petrol fees, parking fees, childcare fees for the kids at home, food and drinks. Days out of work and so on. It all adds up.

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    Mute Thors Big Hammer
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    May 20th 2014, 8:32 AM

    James you are an absolute moron. If a child has a serious illness it shouldn’t matter on what a parents income is everything should be made as easy as possible for child and family.

    20
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    Mute Ian O'Donovan
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    May 20th 2014, 8:03 AM

    There are alot of over 70′s getting letters about their medical card eligibility now.
    Getting a medical card now is like winning the lottery.

    22
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    Mute Blacksod63.
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    May 20th 2014, 11:12 AM

    If you have kids doing state exams or going to college having full medical card means u pay very little or nothing.

    3
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    Mute Thors Big Hammer
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    May 20th 2014, 8:30 AM

    I would kill to ensure my kids got the health care they deserve. How dare tgis government take away medical cards to thoese in need.

    And shame on all people that vote FG you are a disgrace.

    15
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    Mute James Gorman
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    May 20th 2014, 8:40 AM

    Who should I vote for thenThors? Be party specific now, no fudging.

    6
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    Mute Thors Big Hammer
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    May 20th 2014, 9:27 AM

    Go independent. .. FG and Labour and good old Ff have ruined this fine country.

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    Mute James Gorman
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    May 20th 2014, 2:38 PM

    Predictable fudge Thors from somebody throwing around the slur moron.
    In the certainty that it won’t be a government of independents and when you have finished ticking them on the ballot which party will you vote first?

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    Mute Thors Big Hammer
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    May 20th 2014, 4:45 PM

    James I was a die hard FF but unfortunately of I had to pick a party it would be SF as I am so disillusioned with the others.

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    Mute James Gorman
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    May 20th 2014, 6:28 PM

    Thanks Thors – figured with the personal abuse you were heading that direction. Part of me wishes Sinn Fein would get in just to expose their ridiculous economic policies.

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    Mute Jarlath Murphy
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    May 20th 2014, 8:16 AM

    I’d it possible to mount a picket on the Fail between now and Saturday to bring attention to these kids plight?

    Time to stop talking.

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    Mute Jarlath Murphy
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    May 20th 2014, 8:49 AM

    For evil to triumph all that is needed is for good people to for nothing!

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    Mute Susan Carabine
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    May 21st 2014, 12:08 AM

    Almost 26,000 people have signed up for this campaign already…just shows the level of support for all the families out there who are over the limit for a medical card and are in dire need of them.

    1
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