I'm still, as the Detroit Spinners would put it, working my way through the bile! Fighting for your child's rights is extremely difficult. It is almost impossible to convey the level of frustration, outrage, despair and downright hopelessness that can fell you at any moment of any day. Every parent naturally wants the best for their child, what's best is a movable bar that is raised or lowered according to our perception of their individual potential, but that bar is always firmly set at fulfilling that potential. Our greatest fears are that we, in some way, could hold them back. To have your child held back by a bloody minded bureaucray is the cruelist form of torture.
The endless lists that trundle on for years and years without any sign of advancement, the false starts, the job's worth officials who just rubber stamp files and move on, they are all stacked against you. It can become all consuming and thereby damage you and the very child you are trying to protect. The mandarins hold all the aces while you jump through hoops trying painfully to flex your brain into the way they may think, in a vain attempt to second guess their next move. It's exhausting. I often wonder about how we put up with such a fiasco of a health service. Think about it, what other service do we continually pay for, even if we don't need it, and then when we are unfortunate enough to need to access it we are denied a service? Not even the most dodgy insurance policy would get away with a blank, no pay out, on all claims. Yet we have no contract, no small print, no redress. The people who control the purse strings are not medics, they can't determine the urgency of any need other than the most blunt budgetary ones. They are faceless, nameless and completely unaccountable to anyone. We all ring our hands and complain but nothing changes. We ring Joe Duffy and get the nation talking but nothing changes, it's quite extraordinary how such a royal mess is allowed to continue.
I've been trying to work out the cost of not giving Rory the service he so desperately requires, and it is the stuff of a serious migraine. If Rory had learned to eat at the normal age, i.e. 4 to 6 months, he would have gained weight much faster and the fact that while on dialysis he was restricted to an intake of only 450ml per day would not have been such an issue. Eating and gaining weight would have seen him reach the optimal transplant weight of 10kg much sooner, lets say for arguments sake a whole year earlier. So that automatically means one year less on dialysis at a cost of, according to latest estimates from the Irish Kidney Association, 150,000 euro per annum. This doesn't include transport from Galway to Dublin 3 days a week for that extra 52 weeks, or the nursing escort two days a week.
Lets take a stab at a very rough estimation of the cost, shall we?
- 1 year extra on dialysis 150,000
- Transport 52 wks @ 600 per wk 31,200
- Nursing Escort 52 wks @ 500 per wk 26,000
- Epo and other medication required
- for dialysis patients, est 1000 per month 12,000
- Specialised feed 150 per week 7,800
- Feeding pumps and Ng tubes est 2,000
- Feeding pump feed bags 500 per month 6,000
- Extra hospital admissions lets say 6 per yr
- @ 4,000 a go 24,000
Rough total 259,000
Annual salary for a speech therapist,
rough estimate 70,000
So assuming we were only held up by one year on dialysis, it could have been more, the difference between hiring a speech therapist , who of course would have treated many other kids as well as Rory is a cool 183,000! And we wonder where the money is going!!! This is a very rough calculation but it warrants closer examination by someone in possession of all the exact costings.
Bear in mind folks that Rory's non eating habit is still costing, even with the kidney transplant, had 70,000 euro been spent in 2003, that would have all stopped at the end of dialysis but instead it goes on and on and on!
This is a crude economic exercise, I wouldn't even know where to begin to try and quantify the quality of life issues or indeed how much it will cost in multi disciplinary therapy as we play catch up on Rory's developmental disorder. Can anyone offer any insight into the logic that is at play here, because I just don't get it!
The similarities with a certain TV commercial spring to mind:
Having your child fulfill their potential? Priceless, for everything else there's the HSE master card!