There are Frills and Fripperies…and Then There are Practicalities.

 

I should be getting my much-needed beauty sleep, not sitting here at four in the morning typing this; but it’s either that or put a fist through the window in sheer frustration.  That’ll teach me to read news stories before I go to bed.

The story in question concerns someone who has far greater cause to be frustrated than I have.  That is mother-of-three Carly Keogh of Blessington, County Wicklow; and reading between the lines it is likely sheer desperation that has caused her to ask the Irish Daily Mail (in an excellent article by Leah McDonald) to highlight the utter torment that she is being needlessly put through at the moment.  You see, her three-year-old daughter Aoife has a brain tumour which is growing on her optic nerve.

I think that it was this detail that got me.  It recalled to me something that Hand in Hand fundraiser John Cloonan mentioned when I was interviewing him some months ago.  His family had gone through their own particular season in Hell some years back and thankfully his story had a happy ending.  With Mrs. Keogh, however, her nightmare just seems to be starting.  And there is no need for it.  There is absolutely no bloody need for it.

The family had applied for a medical card and were indeed granted one that was supposed to last from June of last year until June of 2015, when Aoife’s chemotherapy is due to be completed.

You know where this is going, don’t you?  Yep, got it in one.  Mrs. Keogh, who naturally enough has had to take leave of absence from her job, turned up at the chemist to collect her prescription only to find that the card had been cancelled.  The card had been cancelled.

What happened?  Did some faceless jobsworth take a look at the family history and think:  Oh wait, these people don’t have enough  on their plate at the moment, let’s pile on some more agony.

So now it’s up for ‘review’ and you know what that means:  yes, you got it again– more forms, more bureaucratic nonsense, more energy wasted on this garbage when it should be used in making comfortable a little girl who is too young to even fully comprehend what is happening to her.

And you know what?  I don’t want to hear that the ‘HSE doesn’t comment on individual cases’.  Just…just don’t tell me that.  I want to see this family get their card back. I want to see an extra burden being lifted from them and allow them to concentrate on getting their little girl better.  Shove your excuses, show a little heart.  And it shouldn’t need me to tell you to do the decent thing, to tell you to do the right thing.  They have now extended it for another month, but that’s just not good enough, not by a long shot.

Mrs. Keogh said:  “How stressful is it to be one week with the consultant—the next week you’re in hospital with her and then you have to go home and fill out all these forms?

“When I was talking to the HSE—before they extended her card—I was in my mother’s house and in front of my mam and my sisters and nephews and other children,  I just broke down.  It just gets to you.”

And this time you don’t need to read between the lines in order to see a world of pain in those few words.

No Money?

I couldn’t have just left it at that, could I?  I had to then read this from Finance Minister Michael Noonan:

“The review of medical cards has to be changed.  We’re not going to do it before the election because we’d be accused, probably, of some kind of stunt.  Shortly after the election that issue will be at rest, preparatory work had been done already.”

Good Lord, do you see what he’s done there?  Leaving aside the breathtaking arrogance of just assuming that they will still have people in power he is actually attempting to put a ‘poor us’ spin on his Party.

I happen to have met Mr.  Noonan several times in another life, another job; and he is– contrary to the way he comes across—one of the more polite ones.  So what happens to them that when they get even the smallest bit of power they lose all touch with the lives of the people that they are supposed to be working for!

And please, don’t give me that old guff that ‘there is no money in the  country’.  There is plenty of money!  They can always find it to fund some junket to Outer Mongolia to research the longevity of the common garden snail or some such rubbish.  Or let’s take a look closer to home:  how is that we can find €70,000 for a ‘severance package’ for ex-Justice Minister Alan Shatter?  I mean, it’s not as if he’s really even gone, he’ll still be hanging around and throwing shapes in Leinster House.  €70,000—on top of salary and expenses? And ‘there’s no  money in the country’? Are you having a laugh, or what?

I was talking recently to Brendan Ryan, who runs The Olde Brewery pub in Oranmore, an establishment that has been a great fundraising friend to Hand in Hand.  I asked him how he would handle it if a staff member came to him, admitted that he was incompetent at his job and was resigning.  But by the way, could you give me a severance package and –oh yeah—I’ll still be sitting over there on that bench at the back and commenting on what you’re doing.  And I’ll still want paying, naturally.

You tell me:  what is wrong with this picture?

So please—don’t say to me, and more importantly don’t say to Mrs. Keogh– that there is no money for medical cards!  I don’t want to hear it!  And come to think of it, I wonder what was the total spending on those eyesores called political posters?

Running on Empty…as Usual.

Hand in Hand has enough money in the bank to last another six months.  Being still relatively new to this, I was horrified to hear that.  Yet Jennifer tells me that it’s always pretty much like that.  It’s only the continued efforts of our incredible fundraisers and volunteers that keep us afloat at all.  After filling in an endless amount of forms herself, Jen is hoping that we will get some sort of grant in the next two weeks.  It’s rare enough that it happens and she is almost used to being turned down, but this time I am confident that someone somewhere is going to recognize that this woman has been stolidly keeping going against all odds for almost six years now.

I am confident that someone somewhere is going to recognize the absolutely essential work that she and this charity is doing.  She may not like me saying this, but it needs saying, so the hell with it:  we have absolutely no money left over for frills and frippery.  Every cent that is raised—every cent—goes on the practicalities of giving our families at least some semblance of normality whilst parents or carers get on with helping their child to get better.  If there is anything left over, we’ll try to do something extra; but that is so rare as to be almost a non-runner.

Because I was shocked at how tired she was looking when I got into the office after being away for a few days, I’ll be writing about Jennifer’s recent work with two of ‘our’ families—and that’s the way that Jen thinks of them, as ‘ours’—in a couple of days’ time.

Meanwhile I’m sure I can speak for her in wishing the very best to little Aoife Keogh in Wicklow.  Get well soon.