Let Her Eat Cake Instead.

It's been a long week. I'm tired. Bone tired. My body feels like it has done a few rounds with Mike Tyson. But, mostly my soul, spirit, essence whatever you want to call it, is exhausted. Exhausted in the way that you find yourself mid conversation with well meaning friends and you just want to give up. I don't mean that in a depressed way, I just mean that my story is beginning to to bore me. It's just so tedious, I'm either railing about the mess of our health service or raving about the wonderful kindness of healthcare workers. It's like living in the extreme swings of yin and yang. I can see people around me are bored now too, as their eyes glaze over when I try to explain the next round of bladder work needed for Rory's unorthodox plumbing. It's that, 'please, no more, I thought you were all sorted since the kidney' response that I don't know whether it makes me want to laugh or cry.

I can't bear another suggestion of 'why don't you write to your TD?' when I recount yet another injustice. Just for the record, I've been to, my TD (and some other people's ones also), the press, Mary Harney, Brendan Drumm, Patient Safety in the Dept. of Health, the Ombudsman for Children, the Health and Safety Authority, Mickey Mouse and Elvis Presley. So for, the results have been only neglible. I can already feel all those positive outlook new year's resolutions slipping, and it's only March. I don't want this life, not for me or my family. I don't want us to be defined by a medical condition. I'm sick listening to myself. I just want it to stop.

Fortunately, I'm not so brow beaten that I can't appreciate the glory of a house with two amazing, belly chuckling, throat tickling kids. There's hope for me yet! But, I really do have to work hard at not letting the system wind me up so much. It's incredibly difficult though, when you are your child's only advocate. His condition, forces us at times to make medical decisions which will affect his quality of life for years to come. It's a big responsibility.I don't feel in any way that we may have failed him, quite the contrary, it's just that continuing to ensure the best is utterly exhausting.

I'm taking myself in hand, for the next few days, fun is the only thing on the agenda. I want to laugh those laughs that come up from your toes. I want to walk on the beach with the wind blowing the cobwebs away. I want to drink wine and eat cake till it comes out my ears!

Any takers?

Cheers,
Ann

Taking Stock

I'm taking a little rest for the next two weeks, so may not be blogging for the duration. I am going to clear my head, draw the battle lines and carefully choose my campaigns.

My draft list of on going skirmishes is as follows:

• Remember that nice paediatrician we saw in November? Well, it turns out, I was right not to get my hopes up, even after follow up phone calls from my good self, we have heard exactly; zip, nada, nothing. That second opinion on the psychology assessment? Nothing. That referral to the feeding clinic in London? Zilch.

• The old thorny issue of the orthotic shoes has reared its ugly head again, Rory, the irresponsible thug, has only gone and grown out of the last pair! The cheek of him. We've been measured for a new pair, and assured that we need them, but the approval ? A big fat nothing, we wait.

• We made many official complaints about the fact that Enable Ireland, in knowingly referring our son to a dangerous speech therapist, were in breach of Children First national child protection guidelines. This resulted in a lengthy HSE report, which stated that there were serious questions to be answered by Enable Ireland. Silence drifts off the now, dusty report. We were advised to get a good legal team behind us, as the serried ranks of safety net quangos, set up to investigate, are completely impotent. Any one for a spot of public sector cuts here?
  

• A TD raised a question in the Dail on our behalf. What did we get? A letter from my old friend - (the 'do you know how much you son has cost us?' manager from Community Don't Care) listing just how much therapy Rory's getting. No word on child protection guidelines or Enable Ireland's conduct though.

• We returned to the Ombudsman for Children on the whole sorry affair. We were met with a polite, please form an orderly queue, response from an overloaded case worker.

• We have refused to darken the door of Enable Ireland until we get some answers, we have no confidence in their vetting procedure for hiring staff. As a result, we can't access services as Rory's case cannot be transferred to community services, without first going through an internal inquiry in Enable Ireland - Frankly, after what we've seen of that excuse for an organisation, I'd rather stick hot needles in my eyes. We get regular letters expressing concern for Rory's best interests from the Director of Services, a misnomer if ever there was one, she doesn't direct and we haven't seen any services! She must type them while oiling the lock on the stable door as the horse runs down the driveway! She even threatened to withdraw his special needs assistant from pre-school if we didn't behave. Yawn.
  

• We have to wind ourselves up for major surgery this summer, it will happen in the UK as the expertise is not available in Ireland. I have no problem with this, but it will, however, demand a certain amount of logistical planning on our part. I need energy for that. I don't want to waste my time playing administrative ping pong with Mary Harney and her merry band of HSE muppets.

I am starting this year on a positive note, I'm still buoyed up by our first ever healthy family Christmas. I refuse to be drawn into meaningless paper chases with idiots. Tempted though I am, to launch in, all guns blazing, it's a long year ahead and I have had 5 long years behind me.

So in the interest of sticking to my fresh new year's resolutions, I'm changing the way I react and I'm taking a break. I hope to return renewed, refreshed, recycled and recharged. I will be busy smelling the roses and hoping like hell, I don't revert, regress and react!

Yours in peace and harmony.....
Cheers
Ann

Defending The Indefensible.

Hi All,

I thought I'd better give you the next installment of our sinister saga of the search for services! I've had 3 months to digest this latest flash point. That digestion has been far from easy. I have lost countless nights' sleep, sobbed into cups of tea, glasses of wine and the shoulders of family and friends. The whole experience marks a new low in our struggles for Rory's care, and you all know, we have already scraped the bottom on more the one occasion.

Since his dramatic arrival, 5 weeks early in Aug 03, we have had the honour of being surrounded by some of the best medical care known to mankind. Our lives have been touched by some of the kindest, most humane professionals I have ever had the privilege to encounter. They have sat with us, all day when necessary, they have been on call 24/7, they have worried with us,informed and instructed us, but most of all, they have empathised. When life throws you the enormous challenge of a chronically ill child, the dice can roll any number of ways. We came out with some pretty good odds. Against us, was the fact that nobody had ever seen a case like Rory's before, but in our favour, this made the team all the more committed to a successful outcome. Before 2003, very few kids born in Ireland were successfully dialysed from birth. In view of this amazing miracle, you could be forgiven for thinking that every possible early intervention strategy would be thrown at this case to maximize the positive outcome.

Even with my 5 years of bitter experience of the basket case that is early childhood intervention in the West of Ireland, I will never be able to fathom why it is so appallingly bad.

Anyway, I digress from the story at hand, I just had to vent that yet again, excuse the indulgence; but I really do believe that it bears repeating.

OK, so bearing in mind the quality of care and professionalism we had as our benchmark, I immediately assumed that the employment of an unlicensed, threat to public safety, as a speech and language therapist, must have been a huge mistake. Management would be suitably horrified when they found out, surely. Mind you, I was not thrilled about the fact that I was going to be the bearer of bad news, what with my previous experience of messengers and shootings! I pondered long and hard on the most appropriate way to inform Enable Ireland management. I figured an elected public representative would be the best person for the job. He would be objective, yet have sufficient gravitas for people to at least, take his phone calls, he would also be in possession of a rudimentary working knowledge of the legislation governing this type of situation. My local TD did not disappoint on two of the above; objectivity and knowledge. However, it seems he didn't warrant a return phone call. After two days, he gave up and rang head office in Dublin. Their reply was curt, and to the point. They knew about her license irregularities, it seems another parent had expressed concerns 4 weeks earlier! Meanwhile she was still in full time employment, paid for by you and me.

Hello people! Anyone out there on planet HSE listening? You were employing a "threat to public safety" to work with vulnerable children and none of you Einsteins thought it might be appropriate to suspend her pending a full investigation? Lets not forget, ladies and gentlemen, that this woman was still in the probationary period of her employment contract, so there were no legal impediments to suspending her. To say I flipped at this news would be the understatement of the century!

Like my local TD, it seems that I was also on their "Don't Call Back" list. The local services manager took a week to return my urgent calls. Annual leave being cited as the excuse, but none of her minions manged to communicate that little nugget of information during the preceding week. When she finally deemed it appropriate to address my concerns, her explanation fell rather short of what I would have expected from a public servant of her grade. According to current wisdom within Enable Ireland, cases of fraud, falsification of qualifications and being deemed a threat to public safety, do not constitute a loss of clinical competency. In other words, the local management team decided not to suspend her because, even though she had no license to practice, her clinical competency was not in question.I would love to have been a fly on the wall at that meeting, listening to the defense of the indefensible. If anyone could translate that into acceptable logic, I would be very grateful. Because at the moment I am at a loss.

Where do you go when the people in charge play by a completely code of moral conduct to the rest of the civilized world?

How can you claim to care for vulnerable children when you knowingly refer them to a therapist who has been deemed a threat to public safety? I had naively thought we had cleared that kind of rot out of this country, when we closed the industrial schools. Is it just me ? Am I being too demanding here?

Advice would be welcome.

Cheers,
Ann