I've been trying to compose this post for a very long time, mulling it over, worrying about going public. We have been brutalised so much by the system that we seem to have become de-sensitized to all the wrongs that are being committed. Sometimes it seems like we're completely out of step with the rest of the world, when we complain, people look at us like we are aliens and give us the "that's just the way it is" speech. This last week has been a new low which I haven't even digested enough yet to write about. I don't quite know where to start on this so bear with me yet again if I am rambling, as I feel like I have just wandered dazed and confused with a still bleeding head injury from a train wreck .
I'll have to go back as far as last March to give you the full picture, I am ashamed to admit that at the time, I was afraid to mention this particular incident as I feared going public would some how impact badly on Rory's care. At that stage, we still hadn't got our service statement or any confirmation of access to services. During the whole fiasco over the missing Enable Ireland Speech Therapist and the scramble to find another to assess Rory under the statutory time frame, I emailed his royal highness Prof Brendan Drum, CEO of the Health Services Executive. In his former incarnation as a lowly paediatric consultant he had reason to see our boy wonder when he was in Crumlin Hospital. (Another period best forgotten, trust me!)
My email, was succinct, I curbed my normal ramblings, I respectfully reminded him of his review of our son's condition in 2004, mentioned all his former colleagues who had treated Rory so skillfully and I asked him why all this expensive treatment was now being put at risk by the lack of Speech Therapy services in the west. I pressed send and waited for a reply, I waited and I am still waiting. Call me old fashioned, but now, a full 5 months hence, I would be inclined to describe the lack of even an acknowledgement, a tad rude. However, out of the blue, in mid April, what can only be described as an incendiary device landed in my in box. And this is where it gets really nasty, you may want to pause for refreshment or fortification before you read any further.
Contaminating my email account, I found a missive so full of spite and veiled threats, that I was left reeling for days. Even now as I type, I can feel my heart rate increase. A local manager, who is charged with overseeing services of the caring profession to the weakest and most vulnerable in our community, saw fit to write in response to us having the temerity to contact Our Lord The Most High Brendan Drum. She reminded us of how she was well aware of our son, and proceeded to detail exactly how much our son had cost her over the years we spent on jolly jaunts to Dublin 3 days a week for dialysis. We were given the breakdown of nursing care, the enormous cost, and most importantly, lest we forget, the fact that all of this was in the form of a 'grant'. Yes readers, a grant, not a right to travel to Dublin for life saving treatment, folks this was a grant, that was within her gift to bestow or take away. We had displeased this all powerful manager by going to her boss with an insolent inquiry about a minor issue like Speech Therapy. We had made her look less than all seeing all knowing among the big chiefs in Dublin, so we must be punished. We must be reminded of who is in charge here, we must be reminded of the 'grant' nature of our support services and in these less prosperous times, this most beneficial bestowal may dry up! There then followed the usual detailed list of the standard chain of letters and reports about that expensive upstart, our son, . Like every one else on the list, we would get speech therapy when they were good and ready to provide it. Who did we think we were with our tales of kidney rejection thinking we could jump the queue?
So let us remember here folks, that our children with special needs, medical, physical or intellectual, who live outside the greater Dublin metropolitan area, are not entitled to support when they have to leave their communities for treatment. They may, if their parents doff their caps and speak very nicely to those very important local managers, be granted little gifts from time to time but otherwise they can just go and whistle for it!
I have to admit, I wept for days. There it was, in black and white, our miracle son, his father's gift of a kidney, reduced to being referred to as a drain on local resources. What can you say in the face of such inhumanity? I have re-read that letter only once or twice, as it is too hurtful, but I have yet to find a shred of any caring in it. But then, that's the secret to running a Community Care service, it is of the utmost importance that you hire managers who don't care. Otherwise the whole enterprise would go to pot, and people might actually get a service.
Alas, I have let that woman silence me, because I was worn out, sick with worry and afraid for the repercussions that would be meted out on my son. This has not sat well with me. Then Enable Ireland hired a Speech Therapist, and all hell broke loose, I am still processing that particular collision. Tune in next time for a full report on that insane incident, I think you've all had enough gore for one day.
The struggle goes on and gets worse.