Well; the auspicious first anniversary has passed and we're all still talking to each other - a major achievement. Corks were popped, gifts and best wishes were gratefully received and big thick wedges of chocolate cake were consumed! A fine day was had by all. Thanks to all you new readers who have just logged on, your comments and visits have given us a much needed boost at a time when our energy was beginning to flag.
It was very therapeutic to be back in Temple St yesterday. The welcome was as warm as always but there was also a palpable sense of shared joy in Rory's progress. It must be so heart breaking for the many dedicated teams that staff our hospitals to have to preform precision work with only the brutally blunt instrument, that is the HSE management attitude, to guide them. I am constantly impressed at how they keep their souls and hearts in tact in the face of dangerous ineptitude. They are the true embodiment of grace under fire. As the other kidney put it so eloquently recently, - he remarked on how he had met countless Wayne Rooney's working in the health system over the last 5 years, but he has yet to meet an Alex Ferguson.
I think that about sums it up really.
That brings us nicely to our current impasse with Enable Ireland. An institution badly in need of a Ferguson style make over (I could name quite a few in there who could benefit from a footie boot being hurled at them)! Again the trauma of what we have endured at the hands of this organization has left me completely speechless, directionless and utterly devoid of hope. Let me try to put this into some kind of digestible narrative for you - again this story carries a health warning - for those of you who are squeamish about children's rights, log off now as this gets really nasty!
Way back in July, our HSE community speech therapist - (who had been doing some very fine work with our little lad), informed me that Enable had finally employed a speech therapist and since all our other services (occupational therapy, physiotherapy and psychology) were allegedly being delivered there, she felt that it would make sense to make the switch to their latest recruit. I have to admit I was uneasy about changing lanes again but I could see the sense in it, all the advice to date indicated that Rory should be seen by a multidisciplinary team. So files were passed, emails sent and calls were made.
I got to speak to this woman in mid July. Now here's where it starts to get decidedly murky. She was quite a force on the phone, as, although she had never actually seen my son, she seemed to be utterly convinced that he needed a very specific test called a cinefluor graphic study. She tut tutted dismissively when I told her I had never even heard of this, and remarked that this was just typical of this country, we were years behind, and she, being a highly qualified American who came from a long line of medical practitioners was clearly the only one who could sort this out. I would have to leave the country if necessary to have this done, and she even hinted that I had indeed been negligent of my son in not having insisted on this sooner. She assured me that if it were her own child or one of her nieces or nephews she would be causing a stink until this test was complete.When she wound down from her rant, I got her to translate the test into our archaic plain Hiberno-English. She was talking about a swallow test.
OK, now I could continue the conversation, we had sooo been here before. I explained that this had already been performed and that there was nothing wrong with Rory's swallow. This cut no sway with our rootin' tootin' yank friend. What the hell would they have known in Crumlin hospital? Anything could have happened since? There was nothing else for it but I had really better get my finger out and find myself a swallow tester stat! She then launched into a vitriolic invective about Enable Ireland and what a shambolic mess they were, particularly the management team. Now, while I had no problem with what she was saying, I did have a problem with the fact that she was saying it to me. I was, after all, her client, and she was, after all, an employee of that renowned organization. There was also that very distant niggling doubt in my mind that if she was a good as she proclaimed, what the hell was she doing working with what she considered to be a two bit operation?
So I managed to extricate myself from the, by now, extremely lengthy conversation by claiming the urgency of an impending school run! I came off the phone with a red ear and a really throbbing brain. Had I really been negligent? Was Rory's oral aversion really all my fault? How could I have not seen this before? Thankfully this self doubt, although profound, was short lived. I emailed the American specialist we had seen in Dublin in May. She confirmed my suspicions and advised against the test. Not only was it very dangerous -(it involves swallowing a large cup of glug called Barium) but it would have been extremely invasive for Rory and could have set us back years in terms of the trust we had built up in him allowing us near is mouth.
This got me very worried, something was very amiss. To satisfy my concerns I Googled the woman, she had an unusual surname so I figured she should be easy to track down. Nothing could have prepared me for what came next. Do remember, that I am very battle hardened but, even a veteran like me has their limits. There it was, a mere 19 seconds later, in black and white, flashing before me on my computer screen - this woman had been struck off in California! I was looking at a petition to renew a surrendered license to practice. Surely there was a mistake, this couldn't be happening - you assume there are vetting procedures in place. To be absolutely sure, I rang the the Californian Speech -Language Pathology and Audiology Board, they confirmed that her petition to have her license renewed was denied, and that as far as they were concerned she no longer had permission to call herself a speech therapist under Californian law. They wouldn't give me any other details over the phone but very kindly faxed through the judgement in her case.
Yet again I was floored, as the fax snaked it's way though my home, (I'm still working with a trusty but prehistoric thermal paper one), reading the pages upside down, words like fraud, falsely using the initials Ph.D after her name, left me reeling. Then it came the final killer sentence that has haunted me ever since....
"The Board remains concerned that if the petitioner were reinstated, the public's safety would be in jeopardy."
So there you have it folks, Enable Ireland had given a full time job, paid for by our tax payers' money to someone who was considered to be a threat to public safety in California. Doesn't that make you feel really secure about where kids with special needs get treatment in this country?
I'll let you all digest that little nugget before I catalogue the appalling reaction we got from Enable Ireland.