Showing posts with label Orthotic Shoes. Show all posts
Showing posts with label Orthotic Shoes. Show all posts

Saturday, 2 October 2010

Subordinated Debt

It's the phrase on the lips of every eejit who's trying to look clever. Personally I think the term was invented in a board room somewhere south of Hades, to be used as a tool to bludgeon the general population into a pulp. I have to admit it's pretty effective, since only fifteen hundred people turned up to protest in Dublin last week at the extent of the country's economic hangover.

Being a simpleton with a less than competent grasp on the state on my own overdraft never mind the national debt, I resorted to my old friend Google. So here goes a bluffer's guide to Subordinated Debt :

There were many more - Google it for yourself, it makes for interesting reading. It occurred to me that children's health services will become the subordinated debt of our solution to the mess in which we find ourselves.

So if I understand this correctly, (which lets face it, in my case is a big 'if') the economic unit on which our future depends is currently being subordinated in favour of the senior units who screwed the whole thing up in the first place.

Permit me an analogy here: a child like our Boy Wonder requires expensive medical treatment to keep him alive, this treatment is attractive to senior medical units because it shows the tangible result of extending the life of that child thus reducing the national child mortality rate, which reflects well internationally on the country as a whole. The effort vs reward equation stacks up well in the short term and saving his life is rightly seen as a senior debt.

Once the danger has passed, the child then slides down to become the subordinated debt of the local primary care authority. In the eyes of the primary care bosses, the child will neither exert enough pressure nor bring sufficient reward to warrant being considered as a senior debt. As a subordinated debt, there is no incentive to provide specialist intervention to allow the child to reach their developmental targets.

When the child ends up in a classroom requiring a special needs assistant or specialist equipment, they can migrate to being a senior debt liability again but the debt has now passed to the education department. The education mandarins will in turn strive to reduce their level of debt on this child by redefining the terms of their liability. Simply put, they will change the terms of the child's entitlement. This change in the terms of entitlement will result in creative reporting from the 'ologists in primary care to meet these new terms and ensure they can off-load the child from their debt portfolio. And so the debt shifts back and forth changing status with each department.

What we all know about debt is that we tend to prioritize our repayments in favour of those yielding the biggest baseball bats should we refuse to pay. Currently the ones holding those lumps of lumber, are unidentified bond holders; nameless, faceless entities beating our children out of the way while they charge to the top of the queue.

This is what comes of living in an economy instead of a society.

Cheers,
Ann

Sunday, 8 February 2009

Steps Forward and Backward

Well some of my January list of battles have been well dented this week! Who'd of thought we'd see results so fast? Of course in typical Irish fashion, what the HSE giveth with one hand, it taketh away with the other!

Ok lets start with the goodish news:

Low and behold, didn't we get another pair of shoes! In this climate, I am rating that as a personal coup. Rory's very pleased with the noise they make. Could this mean that HSE policy is now to actually finish orthotic treatment once it's started? Surely not? Such common sense and foresight would be tantamount to treason in this economic winter of discontent. Well, for whatever collective rush of blood to the head that resulted in this podiatristric (is that a word?) bounty, we are truly grateful!

There are also unconfirmed reports of a Paediatrician's letter floating around in the ether. Seemingly, it has been sent to a number of people connected with Rory's case, GP's, Speech Therapists, Nephprologists and the like. However, it was not deemed appropriate for the eyes of his parents. Proper order too, I say, you couldn't be giving the patient their own notes. What would we know about the situation? We're only his parents and the former owner of his new kidney. I do hope it proves helpful, this report, but mostly, I hope it says nice things about us. Maybe this is another record, we met the Paediatrician on Nov 20th and the report goes out in Feb., what's that? A little over 8 weeks? Good job his global developmental delay isn't fatal! Mind you, I think my own development is going into decline a this stage!

Now here's the 'taketh away' bit. Community Don't Care has cut back our nursing cover for Rory by 70%. So we can kiss goodbye to 70% of our current short sleep supply 'till he learns to eat and pee on his own. This particular blow was delivered on Christmas Eve, nice touch eh? We appealed, naturally, but got the big fat NO on Fri.

Not to be outdone, by Community Don't Care, the Ambulance Service has cut our transport to clinics in Temple St. I now have to work out how to drive while emptying a urine bag in the back seat. Anyone out there with any experience of the gymnastics required for this? Please get in touch, I'm going to need some tips. The logic behind this decision being, that transport stops 6 months post transplant, and fair dues we are now over a year out. A very fine rule this is too, if you are an adult and you can go to your local nephology service. We've no one to blame but ourselves you know. On reflection, it may have been ill advised to have a chronically ill child while residing outside the greater Dublin area, what were we thinking? Be warned any of you out there who may be considering a similar lifestyle choice! But rules is rules and Rory has broken way too many in his short life and the powers that be are getting a tad tetchy. He defied them all by surviving, now it's payback time! As our friend in Community Don't Care likes to remind us, he has clocked up quite a bill with the state already.

I wonder if they'd give us a credit note for the kidney?

Cheers,
Ann

Monday, 14 April 2008

Are You Ready Boots?





Hi All,

As you can see the boots arrived - and Rory loves them! Already I can see an improvement in his balance and he is running with so much more confidence. We've had a great a great couple of weeks, I still can't believe that we haven't been in Temple St since the 27th of March, it's a new record for us. Rory is back there tomorrow for blood tests, the first that will have to be taken without his central line. Poor little man he hasn't yet realised that they will have to stick a needle in him from now on to get the blood samples required, he's not going to be pleased when he figures that one out!

The plod continues with the Needs Assessment appointments, at least now we can stamp in and make lots of noise with the new boots! I won't bore you with the latest round of brain throbbing, eye twitching encounters, but suffice it to say we are remaining polite in the face of some very challenging situations!

Rory is being his usual charming self, he now modestly proclaims to anyone who will listen that he is 'Fantastic" - he was never one for the understatement, our Rory.
He has also recently developed an interest in Rice Krispies and has now taken to pouring the contents of the box onto the kitchen table. He sometimes likes to add milk to his Krispie mountain, then sticks a spoon in the middle, and puts it to his lips! In the world of an orally averse little boy, this is the feeding equivalent of the Good Friday Agreement! In a move as historic as, say Ian Paisley admitting he quite fancies a decade of the Rosary of an evening, Rory actually picked up a single Rice Krispie on Saturday and put it into his mouth! We watched, while trying desperately to pretend we weren't looking, we waited for the gag, the spit and the violent ejection, but nothing happened. The Krispie simply moved round in his mouth and then went the way a krispie should go, south to his tummy! I'm surprised it wasn't the top story on Sky news!

So lets all hope and pray that this is the start of many more snap crackle and pop moments in this young man's already most eventful life!

Cheers,
Ann

Wednesday, 2 April 2008

Small Victories

Hi All,

I'm happy to announce progress on the footwear front!! The obviously flush footwear department of our local HSE Community Care has rubber stamped the purchase of special shoes for our boy's feet! Of course now we wait, as they have to send someone out to actually buy them! I promise photos in 3D when or if they arrive. Although I can't help feeling some kind of residual survivor's guilt for those who may not have been in the inner flush circle on this round Imelda Marcos type indulgent spending! If you know anyone in that situation, still waiting for approval for shoes, please pass on our messages of support.

The other break through, is in the Speech Therapy department! Lets not get ahead of ourselves here folks, we haven't actually been given any service, but we have been given a date for an Assessment of Need. This will merely outline our urgent need for the services of a Speech Therapist, but will then refer us to yet another waiting list, due to the lack of services available in our area! Are you all still with me? We have the privilege of meeting her on Friday, I promise to report in detail on that one, it should prove very interesting.

On a much more tangibly positive note though, I'm happy to report that we are now half way through our first week in almost 4 years without setting foot inside Temple St Hospital! Imagine, our first week since Aug 04 that we have not been in Dublin, we don't quite know what to do with ourselves. This momentous milestone is due to his recent blood results being very good and also to the fact that we said goodbye to his Central Venous Catheter last Wednesday.

The Central Venous Catheter has literally been his life line since starting on haemodialysis in Sept 04. Sited in one of the veins near the heart, it is the magic piece of plastic which gave the team access to Rory's blood for dialysis. Before the transplant, the continued good function of this tube marked the miraculous bridge between life and death for Rory. It had served him very well and really without incident since it was inserted. However, we were not sorry to see it go! No room for sentimentality in this house! Kids who have these can't have baths or swim as this line must be kept dry. We're still waiting for the opinion of Rory's transplant surgeon on him being allowed to have a shower due to his unorthodox urinary plumbing works.

Rory is also back at his Montessori school two days a week. It's such a joy to watch him skip in the door with all of his classmates. He's making slow but steady progress and was even persuaded to sample some yogurt by his teacher! He spat it out before it even hit his tongue, while one of his buddies sagely pronounced that he mustn't have liked the taste! Still he tried it and he didn't vomit or gag like he used to, so I'm officially classifying that as a victory also!

It's fitting, during this Organ Donor Awareness Week, to concentrate on the little victories. If Rory's story has moved you, please consider getting a Donor Card but also make sure you discuss your wishes with your family.

Lets remember here folks, that thanks to an amazing gift from his Dad, a little boy who was born without kidneys is now running round and tasting yogurt!

Cheers,
Ann

Monday, 31 March 2008

A Boy's Right to Shoes


Hi All,

Sorry for the silence - life has been busy lately what with managing milestones and contemplating military strikes on local HSE positions! As you know we've been running the gauntlet of assessment appointments for Rory's Assessment of Need. Further to this, I have now assessed that the one thing he really needs, is a full time appointment secretary.

So far, we've had his Physiotherapy needs assessed, and guess what? He needs Physio. Then we had part one of his Occupational Therapy assessment, and what a coincidence? - he needs that too! We also had the pleasure of meeting the local Psychologist and wouldn't you know it - he could do with a little support here also. The whole painful process has, at least, helpfully pointed out, that not only will I have to battle for Speech Therapy, but I'll also have a whole range of urgent needs but non existent services to look forward to in the future. Oh be still my beating heart!!

However, my own personal favourite recent encounter was with our local neighbourhood friendly Podiatrist - the person who fits kids with those really attractive corrective shoes. You all know the ones - usually navy, with sensible lace up fronts which just scream "Bully me I'm handicapped". Fortunately, I am very happy to report that they are much smarter these days and don't have that same "use me as target practice" aura.

I'd been waiting for an appointment since last summer - a mere blink of an eye in HSE waiting terms, I know, but 8 months in the life of the fallen arches of a 4 year old represents a large percentage of their life time walking on this earth. We skipped eagerly to our meeting, to be told, what we had already suspected, that yes, indeed Rory did need special shoes. Great, now it's official, where do I sign the form? Well here's the rub. It's not that simple - if it was, then unthinkable things could happen - like everyone who needs a pair might actually get them - and how would we deal with such wanton efficiency?

The very nice Podiatrist inquired if we had a medical card, I gleefully confirmed that we had. She helpfully advised that I get the shoes under the medical card scheme as they were prohibitively expensive. I naively concluded that since we had already qualified for the card and she herself had given her professional opinion of my child's need, then where's the problem? Eh, well no, you see it doesn't work like that. Sometimes the HSE doesn't always sanction them. At this stage, the old familiar temple throb was beginning to make me twitch but, I realised, that in her capacity as the mere messenger, she was clearly not the person to shoot! So I politely inquired how I would know there was a problem - of a HSE sanctioning nature so to speak. I was told that if I didn't get a letter telling me to attend the next clinic in a months' time, then I could reasonably assume that there was indeed a non sanction issue at play. I left in more of a whimper than a temper.

Then logic - the old Nemesis of all things HSE related, kicked in. I thought I'd rather just cough up whatever it costs to get the shoes now, rather than wait for another month on top of the 8 I had already waited, to be told no, and then have to pay for them anyway. So I made a few calls. I eventually happened on the right person to speak to in such situations. She was extremely efficient and understanding - clearly she couldn't have been working with the HSE too long! She would ring her boss on my behalf and get straight back to me, and she did exactly what she promised. Minutes later I was greeted with the breezy sound of her, keen as mustard, tones when she cheerily advised me to" fire ahead with the application as they were flush this month"! In my stunned state I could only wonder if I had phoned her a month earlier, would the news have been less positive? Oh yes, she agreed, it was a disgrace, but that's the way it works - in the leaner months of the HSE fiscal calendar, kids who need orthotics or special shoes go without, if that particular department is, to use their own parlance, less than flush!

Such exacting budgetary management is to be lauded - I am so glad that the best budgeting brains in the country are making sure that no kid gets expensive shoes at taxpayers' expense, without its parents first being brought to their knees!

And lets remember now folks, that there is still a little boy who got a kidney from his Dad 4 months ago who can't eat, and who still wobbles when he runs because of his fallen arches!

Cheers,
Ann