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Dublin: 14 °C Thursday 20 June, 2013

Little Liam loses nursing care hours on his 4th birthday

The Hall Family have made a direct appeal to the Minister for Health to reverse cuts. Meanwhile, a protest is due to take place outside Government buildings today over disability cuts.

Image: Claire Durkin Photography

A ROSCOMMON FAMILY “left in limbo” because of further cuts to the health budget have made a direct appeal to Minister James Reilly as their son loses his nursing care hours.

Liam Hall, who turns four today, has been described as the latest casualty of Health Service Executive cuts. The young Rooskey boy suffers with a severe and complex neurological condition which is complicated by laryngomalacia (softening of the tissues of the larynx), seizures and visual impairment and, as a result, needs “around the clock care”.

He needs to be tube fed and is completely dependent. Between September and March, Liam was able to attend just 15 days of his pre-school placement. His parents say that as gets older, he will need more home nursing hours – not less.

Until now, he has received 12 hours of home nursing from the Jack & Jill Children’s Foundation but that support comes to an end today, on Liam’s fourth birthday, but is yet to be replaced by the HSE. The charity says he now falls outside its criteria (it cares for newborns to four-year-olds) and his care plan must be taken over by the HSE “sooner rather than later”.

Although the foundation says it will not abandon the young boy, it is also under severe financial pressure as it receives only 18 per cent of its budget from the HSE.

Liam’s parents Áine and Brian say that the HSE were first notified last September about the imminent cessation of their home support but have failed to act.

“Regardless of the best intentions, family and friends are simply unable to look after Liam. On a good night, he wakes up three times which is just exhausting for us and as Liam gets older we’re going to need more support hours to keep going,” explains Áine Hall.

Liam has two siblings, Niamh (16 months) and Seán (5), while Áine is currently expecting her fourth child.

Currently, the HSE provides 10 hours in home nursing per week to Liam. However, they must be delivered in two slots of five hours each between the hours of 8am and 8pm. There is no flexibility.

This timetable is “way too regimental”, according to Áine and Brian. It also fails to provide care during the critical night time periods. Jack & Jill has provided a much more flexible service until now.

“Liam is our beautiful, precious son and brother to Seán and Niamh, who deserves your support,” Áine said in a direct appeal to Minister Reilly.

“Underneath all of this disability, he’s a little boy who just wants to be at home, with his family and friends, where he belongs. I have to say that Jack & Jill have given us great support over the last four years but now it’s time for the HSE to step up and give us the support we need.

But why do we have to fight so hard for everything, when all we want to do is to look after our little boy at home?

“You may work long hours but so do we and 24/7 care for Liam literally means 168 hours a week. As Liam’s main carers we need a lot more support from the HSE to keep this up.

“Liam doesn’t have a voice, but if he did he’d say ‘Minister please do your job and help my Mam and Dad who are so tired and upset on my birthday. It shouldn’t be this hard.”

In another appeal, the CEO and founder of Jack & Jill Jonathan Irwin thanked the Irish public for coming to the foundation’s rescue.

“We stand shoulder to shoulder with the Hall family today and we won’t walk away and abandon Liam. Unlike the Minister and the HSE we won’t plead ‘no budget’ and walk away from sick children like Liam. We’ll have to find the budget…

“This culture of cuts in homecare has got to stop, otherwise children like Liam will end up back in hospital unnecessarily. It’s time to take stock at a national level and the complete lack of a national paediatric home nursing care budget has got to be addressed by Minister Reilly before the situation gets much worse.”

Meanwhile, people with disabilities are to protest cuts to independent living supports outside Government buildings at noon today. They will be joined by their Personal Assistants, Home Helps and families to demonstrate against what they call the “disgraceful, retrograde and inhumane cuts to frontline services.”

They added that they will continue to rally against the latest round of cutbacks “for as long as it takes to abandon this decision”.

Related: Gluten-free product allowance cut for coeliacs>

More: Minister Varadkar defends €130 million health cuts>

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Comments (37 Comments)

  • Why does Reilly think he is saving money by cutting home care? This boy, if not cared for at home WILL end up back in hospital and this will cost a LOT more money – not to mention the suffering and heartbreak for both.

    Reply
    • Totally agree, all the primary care cuts will have massive implications down the line in the acute hospitals. It’s common sense aside from the human factor of allowing the most challenged in our society suffer the indignity of begging for care they should automatically receive.

      Reply
  • Have a Happy Birthday Liam. Hope you have a great day with your family and friends.

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  • Very very sad , but as long as all the TD’s and minsters get new IPADs the world will be a better place.

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    • This Headline is misleading as there have been no cuts to service in respect of this piece of PR from a charity called the Jack and Jill Foundation. The HSE provides ten hour per week support for this family and continue to do so. The Foundation which is a charity don’t support kids over four years of age.
      Clearly there have been no cuts by the HSE to the hours provided but additional care is being asked of the State to replace NGO support. The picture of the child is factual but inflammatory and should never be used in these types of circumstance as consent has not nor could it ever be given.
      This is a clear puff piece put out by a charity that is struggling to remain viable due to the drop off in financial support by the general public in a recession. Teachers Unions always use children’s pictures when issuing statements about funding and there is something immoral and unethical about this practice on consent grounds.
      Ergo the Journal should change their headline on the story.

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    • Hi Mick,

      There is no reference to cuts in the headline? “Little Liam loses nursing care hours on his 4th birthday”

      Liam is losing his nursing care hours today. I haven’t mentioned the HSE in either the headline or the excerpt. Both are factually correct and will not be changed.

      As for your assumption that the picture was used without consent is COMPLETELY inaccurate. Of course permission was granted by both of Liam’s parents and the photographer. The Halls took the brave decision to make their story public to highlight their state of limbo because the HSE has failed to provide the adequate number of homecare hours to their family.

      Have you read the story? I ask because I can only assume you read the headline, saw the picture and skipped to the comments section? There are quotes from Liam’s mother Áine who has issued a direct appeal to the Minister for Health, asking for the HSE’s assistance as Liam now falls under its remit but because of budgetary constraints has not yet been allocated flexible or additional hours.

      I also take issue with your description of this article as a “puff piece”. I’m pretty sure there is nothing light about the Hall’s current situation.

      Thanks,
      Sinead

      Reply
    • @Sinead have read most of Micks comments if you are negative towards the government his normal response is to berate and accuse you of being an idiot.Clarifying something for someone with blinkers on is pointless.

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    • I think the headline should be changed slightly but only because calling the subject ‘Little Liam’ is editorialising the story and giving a sympathetic bias before we’ve read the actual text and formed an opinion.

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  • Jesus Christ FF. This is outrageous!

    People, are we just going to sit back and let this happen to one of our own?! My blood is fu*king boiling here!

    Reply
    • …the Hall family have made a direct appeal……over disability cuts……
      I read the story and the byline rather than the Headline and didn’t miss anything. It’s my understanding that this piece comes from the Press or Communications people at the Jack and Jill Foundation. Furthermore the Issue about consent is that the use of a childs photograph to tart up a press release is somewhat repugnant to me as a minor cannot consent and the parents shouldn’t be asked or allowed either.
      When we see public demonstrations in our cities and children are placed out front with placards provided by Unions or Organisations I believe most reasonable adults find it disturbing. When the child used for such purposes has a disability it’s even worse.
      I stand by my view on the suggestion of cuts to Service and the misuse of children.

      Reply
    • @Mick are you just deluded or are you what you frequently call others an “Idiot”.It was shown to you where you were wrong,but you won’t accept that and then haven’t the cop on to respond to Sinead directly.Christ but FG are scrapping the bottom of the barrell for defenders aren’t they.

      Reply
    • Sorry to be pedantic but the accusation of a puff piece was in respect of the PR by Jack and Jill.
      If people are concerned they can make financial contributions to the organisation to allow their work to continue for children over four years of age.

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    • The main thing Creamy is that the bondholders are looked after…everything else to the sword…spineless Inda must take care of the bondholders. We should keep this kind of article in mind when they come slithering to our front doors looking for votes….

      Reply
  • Yeah but Tony O’Brien’s €195000 salary has to come from somewhere, why not the vulnerable 4 year olds???

    Reply
  • Yes but we have to pay our debts! Banks, EU and IMF before our own people, don’t you know that by now!!

    An absolute disgrace. This whole setup is a farce. Just how much more do we take!

    Reply
  • What will the Irish do? NOTHING! Ach sure we will wait and see if anybody else does something! Pathetic

    Reply
  • What about the politician (the nice person you voted for) who promised to fight for fairness, justice and care of the elderly, the sick and those without a voice-and who has now scurried down the halls of power and voted to cut essential services by a coward’s press of a button. Those politicians cannot hear the voice of the voiceless, don’t see the unseen people of this country. Shame on those in power who lack moral commitment.

    Reply
  • This is an absolute disgrace – no matter what party are in government, bank bail outs etc this little boy needs & deserves every bit of help to reach his potential! Speaking as a dad of a child with a physical & mental disability this sickens me.

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  • It is such a disgrace that families who have so much on their plates already also have to put up with this! Our daughter just passed away a few weeks ago and suffered from a severe neurological illness and our family wouldn’t have been able to look after her without the help of the Jack and Jill Foundation and a few other helpful people. The HSE was never a big help for us and only made things more complicated most of the time. It takes a lot to look after a sick child and if there are families out there who WANT to do as much as they can then I think they should get all the help possible and should not need to fight for this.

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  • Sickening.

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  • Climb back in under you rock mick Collins , how ever the story is written , portrayed or otherwise does not actually matter . What does matter is the fact that there are kids all over this country who together with their parents just cannot make do with the existing level and amount of care being provided let alone talk about cuts .

    On topics such as these where by the writer has the welfare of the sick kids at heart you would be well advised to go out the back and scratch yourself as your comments are not welcome here .

    Reply
    • ….however the story is written or portrayed…it doesn’t matter.

      Truth doesn’t matter
      Facts don’t matter
      Honesty doesn’t matter ..integrity doesn’t matter ..lies don’t matter.

      As long as we get what we want we will get it any way we can is what you’re saying. While the HSE is battling overspend with ill conceived ideas because the real cuts have to come in salaries it’s ok for NGOs to push for a larger slice of the cake that doesn’t exist any more. Lies heaped upon lies until people are dizzy trying to understand any of it. While all of that is going on there are devious people playing on people’s fears for their own political gain and so the game goes on and on and on.!

      Reply
    • You speak about Truth, Facts, Honesty and Integrity. Can you give me an example of the last time anyone in government has acted using any of these traits. In case you don’t know, the Jack and Jill Foundation was started by Mr Irwin after he and his wife had a child who was totally dependent on full nursing care and were advised by the consultant in the hospital to go home and leave their baby behind because if they took him home, they would not get the supports they needed and the stress and strain would cause difficulties in the m arraige, damage the other children and deplete the family finances. The Irwins were lucky enough to be in a financial position to pay for their own home care nurse and took their baby home as part of their family until he sadly passed away. They then decided to set up this charity to help other families in this situation who could not afford to pay for the support themselves. The Government knows that the Jack and Jill Foundation will not abandon families and I believe sadly that this is one of the reasons they refuse to provide any extra support to replace what the Jack and Jill Foundation has been doing. I worked with a number of families for years who used the services of the Jack and Jill foundation and even with it life can be very difficult for these families never mind what it would be like without it. I have worked in health services in this country for many years and believe you me there are many many ways money could be saved without cutting frontline services but the will is not there to do it. The government dont care about these vulnerable children or their families but they should because if this continues all of these children will end up in full time residential care, and their families will break down under stress and strain and in the long term will cost the government a lot more money. When is somebody in power going to realise that if you do not address these difficult issues and provide excellent primary healthcare and family supports, the costs in the long term both financial and societal end up being so much more expensive to the coffers of the state.

      Reply
  • I hope this example inspires a massive protest. No cuts to home care budget. Let’s see what peaceful protest can do to get better respect for the people from this horror of a government. Come on SinnFein, let’s see what you can do?

    Reply
  • Sorry journal

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  • @MickCollins. . . you seem to have issues with the jack and Jill foundation. Do you actually know what they do. and how much support they give to families with critically ill children.
    And your comment that you stand by the cuts to services. I hope that you are never in a position that hundreds of families are in with sick children and the need of support . Unfortunately most of the kids that jack and Jill help don’t make it past the 2nd or 3rd birthday and they can only do so much. And the bloody government should step up and help the families of this country and not their own agenda. So shame on you for picking holes in a storey that highlights a very sick child needing help.

    Reply
  • Now journal you can’t delete that . I’m sympathizing with mick here so please accept my sincerity and leave my post up .
    Forgive my spelling please

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  • DO SOMETHING PEOPLE IN IRELAND YOU DON’T AND SHOULDN’T PUT UP WITH THE WAY YOUR GOV TREATS THE VERY PEOPLE WHO VOTED THEM IN..

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  • Quit your moaning, the banks must get their money.

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  • It’s all right for them to cut services for people who really need it but yet those who are high up and are chauffeured around the place like they are something special are the one,s who these cuts will benefit. This country needs to take a stand against the people we call our “government” . They are supposed to be our leaders and supposed to work for us but all they seem to be doing is cutting the most vital parts of society while they swan around on big fat checks paid by US.

    http://www.change.org/petitions/supporting-the-irish-nation-step-down-from-government#share?utm_source=guides&utm_medium=email&utm_campaign=weekly_summary

    Reply
  • I have four nephews who all have special needs. Their parents have to fight every step of the way for services. This health service doesn’t even consider the amount of caring which is done by parents. These parents are saving the gov thousands by caring for their children at home. In regards to using children’s photos in these stories that reality. Why so offended? These are the faces to the cuts!!! The most vulnerable are these children.

    Reply
  • options 09/09/12 #

    I think poor mick has failed to grasp the sheer reality it is to look after a sick child,the state has a responasability to look after its citizens,they have closed all the residential places for children under 5 , families could and would not be able to survive without the role Jack nd Jill and he should do some research what support they give to families.

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  • That croke park agreement has got to go in the shredder very soon.

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  • I referred to the cuts as ill conceived ideas by the HSE full stop. I never supported the idea of front line service reduction when the elephant in the room is being ignored . Salaries of Public Servants at fifty per cent above the private sector and both Doctors and Nurses with the highest salaries in Europe. Add to this the absentee rate of up to ten per cent and the savings are pretty obvious. I have repeatedly made these views known and particularly on this site over the recent past. Why is it that contributors find it so easy to ignore facts. Furthermore If patients can be attacked in the form of service reduction then so can employment agreements and particularly when the economic circumstances are so dire.
    I still return to my original thesis on this story. It is wrong to use imagery of children in public debate and
    In this particular case the service levels by the HSE continues at the same levels and the story line suggests something else.

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    • Mick give it over when you’re wrong that’s it your just wrong.But i do not agree that you’re a tosser!

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    • Ger c 05/09/12 #

      Mick, I am a nurse. I’m interested to know exactly what you think I should be paid ? Really interested to know what you think I should be paid on Christmas day or 4 in the morning to take care of you or yours if you need care. Oh , and by the way , my pay is already down 30%. Funny how people never compare our wages to what our colleagues in the States earn, where they are valued as a profession and paid appropriately .

      Reply

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