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?



Anonymous said...

Re: transport stopping.

The "very fine rule", of transport stopping 6 months post transplant should but does not apply to everyone! Some children well over year post transplant still receiving transport from very far away!!

AnnB said...

Hi Anonymous, any chance you could let me know the HSE region (I don't need any names) so I could quote a precedent? Without it, they will just deny it's happening.
Many thanks

steph said...

Sorry to laugh but your sense of humour in the circumstances, is priceless!

And if you didn't laugh, you'd cry.

They just don't get it, do they?