A Boy's Right to Shoes

Hi All,

Sorry for the silence - life has been busy lately what with managing milestones and contemplating military strikes on local HSE positions! As you know we've been running the gauntlet of assessment appointments for Rory's Assessment of Need. Further to this, I have now assessed that the one thing he really needs, is a full time appointment secretary.

So far, we've had his Physiotherapy needs assessed, and guess what? He needs Physio. Then we had part one of his Occupational Therapy assessment, and what a coincidence? - he needs that too! We also had the pleasure of meeting the local Psychologist and wouldn't you know it - he could do with a little support here also. The whole painful process has, at least, helpfully pointed out, that not only will I have to battle for Speech Therapy, but I'll also have a whole range of urgent needs but non existent services to look forward to in the future. Oh be still my beating heart!!

However, my own personal favourite recent encounter was with our local neighbourhood friendly Podiatrist - the person who fits kids with those really attractive corrective shoes. You all know the ones - usually navy, with sensible lace up fronts which just scream "Bully me I'm handicapped". Fortunately, I am very happy to report that they are much smarter these days and don't have that same "use me as target practice" aura.

I'd been waiting for an appointment since last summer - a mere blink of an eye in HSE waiting terms, I know, but 8 months in the life of the fallen arches of a 4 year old represents a large percentage of their life time walking on this earth. We skipped eagerly to our meeting, to be told, what we had already suspected, that yes, indeed Rory did need special shoes. Great, now it's official, where do I sign the form? Well here's the rub. It's not that simple - if it was, then unthinkable things could happen - like everyone who needs a pair might actually get them - and how would we deal with such wanton efficiency?

The very nice Podiatrist inquired if we had a medical card, I gleefully confirmed that we had. She helpfully advised that I get the shoes under the medical card scheme as they were prohibitively expensive. I naively concluded that since we had already qualified for the card and she herself had given her professional opinion of my child's need, then where's the problem? Eh, well no, you see it doesn't work like that. Sometimes the HSE doesn't always sanction them. At this stage, the old familiar temple throb was beginning to make me twitch but, I realised, that in her capacity as the mere messenger, she was clearly not the person to shoot! So I politely inquired how I would know there was a problem - of a HSE sanctioning nature so to speak. I was told that if I didn't get a letter telling me to attend the next clinic in a months' time, then I could reasonably assume that there was indeed a non sanction issue at play. I left in more of a whimper than a temper.

Then logic - the old Nemesis of all things HSE related, kicked in. I thought I'd rather just cough up whatever it costs to get the shoes now, rather than wait for another month on top of the 8 I had already waited, to be told no, and then have to pay for them anyway. So I made a few calls. I eventually happened on the right person to speak to in such situations. She was extremely efficient and understanding - clearly she couldn't have been working with the HSE too long! She would ring her boss on my behalf and get straight back to me, and she did exactly what she promised. Minutes later I was greeted with the breezy sound of her, keen as mustard, tones when she cheerily advised me to" fire ahead with the application as they were flush this month"! In my stunned state I could only wonder if I had phoned her a month earlier, would the news have been less positive? Oh yes, she agreed, it was a disgrace, but that's the way it works - in the leaner months of the HSE fiscal calendar, kids who need orthotics or special shoes go without, if that particular department is, to use their own parlance, less than flush!

Such exacting budgetary management is to be lauded - I am so glad that the best budgeting brains in the country are making sure that no kid gets expensive shoes at taxpayers' expense, without its parents first being brought to their knees!

And lets remember now folks, that there is still a little boy who got a kidney from his Dad 4 months ago who can't eat, and who still wobbles when he runs because of his fallen arches!

Cheers,
Ann

How you can help

Hi All,

A brief note to thank you all for your messages of support. In answer to your many questions of what you can do to help, please keep the comments coming on the blog. Please talk about this situation, as I am sure we are not the only ones. Please make your local representatives aware of your outrage. I want to build up a body of public opinion that is informed, first hand, of the chaos that passes for community health care services for our most vulnerable children. The only way we will ever effect change, is if we take responsibility for what is going on. I am keeping this blog to bear witness to what is happening to my family, this is the only way I feel I can make my contribution right now. Your support is of huge importance, so keep the comments coming and pass on the blog address to others in similar situations, lets hear their stories too.

And lets not forget folks, that there is a little boy who got a kidney from his Dad over 3 months ago, who still can't eat.

Cheers,
Ann

That Parallel Universe I promised.

Hi All,

Did you ever start something and half way through,when the process is so thoroughly turgid you have one of those "what was I thinking?" moments. Well I'm slap bang in the middle of one of those moments - like just past the half way point in the dark tunnel where you have no choice but to keep going. Such is life in the middle of the latest HSE bureaucratic beauty - known as The Assessment of Need. At this point in the journey, my own personal needs could be met fairly quickly and effectively by a week in the Sun enjoying those drinks topped with paper umbrellas, or a good hypnotist telling me I've just woken from a session and the last 3 months were all a dream!

But alas I'm stuck here grappling with the immobile Gorilla that is the Assessment of Need. This little treasure was obviously cooked up by our country's best and brightest public servants with only mayhem on their minds. It even sounds positively progressive on paper. It's all there in black and white in the Disability Act 2005. Under this marvel of modern democracy, children under 5 years of age are entitled to an independent assessment of their health and educational needs arising from their disability. See, I told you it sounded good on paper. Once assessed, your child will receive a service statement - but you see, now this is where it begins to resemble a dodgy second hand car dealership. Your child is then legally entitled to the services laid out in that statement - now, how good does that sound? Except there's a but, and this is a really big one, your child is only entitled to services where available. Those two words 'where' and 'available' those harmless little collections of vowels and consonants are capable of making a complete nonsense of everything that precedes them. You go through months of assessment, 6 long months in total under the Act, to be given a statement of your child's needs but no provision of services. I warned you it was a beauty!

There are also some lovely twists along the way. For example, Rory, as you are by now, quite sick of hearing, has some quite urgent speech and language therapy needs. You don't really need to be a trained assessor to spot that one. As you also know, Enable Ireland have no speech therapist in Galway, so there is no one to carry out that part of his assessment. Hold on to your frontal lobes here - as you may experience some throbbing shortly. I innocently enquired about paying privately for this part of the assessment. Pure sacrilege on my part of course! This assessment may only be carried out by a private therapist where there is a clear case of urgent need and no one qualified within the public sector to carry it out. Apparently Rory doesn't yet fit these criteria,(go figure that one), consequently, a speech therapist must be found within the next 4 wks to assess him or they will be in breach of the act.

Nothing like the possible breach of an old act to focus the mind of a public servant! I received a call from the local Speech Therapy services manager last week. I had spoken to her last summer before I ended up at the office of the Ombudsman for Children. She was at pains to point out her safety concerns about offering Rory a service - what if he gagged? What if he can't swallow? I explained to her again, as I had also done in detail last summer, that there was nothing physically stopping him from eating - this was an acquired defensive behaviour quite common among kids who have been tube fed from birth. The problem was we couldn't get anything into his mouth! Still she felt uneasy and had even phoned Temple St. to see if they could carry out a special test under control conditions. I politely asked what exactly was involved in the test. "Oh he'll just have to swallow something and it will be filmed going down his oesophagus" she chirped. "But we can't get him to swallow anything" I wailed "that's why he needs Speech Therapy!" Her reply was an abrupt 'we'll get back to you.'

Is it just me, or is this a parallel universe populated by people who's minds are wired in a completely different manner to the rest of us poor mortals?

But lets remember here folks, while the HSE continues to prevaricate, there is a little boy who got a kidney from his dad who still can't eat.

Cheers,
Ann

Swimming the Atlantic in Treacle

Hi All,

Are you ready for your next installment? Well here goes, after that investigation which was carried out with surgical precision, -( how else would they have traced all those lost letters?), on Sept. 27th last, we miraculously arrived at the top of the waiting list in Enable Ireland. Champagne corks popped - metaphorically at least as by this time we were up to our what's its in stress with the living related transplant only weeks away.

A social worker was dispatched to our humble abode for the requisite tea and sympathy chat so that a report could be written. So far, so familiar. A very neatly typed report arrived shortly afterwards giving full details of Rory's needs, medical history and stating that we would be admitted for Occupational, Speech and Language therapy but that also there would be input from the in house psychology team ( to review Rory's developmental delay) and that physiotherapy would be offered when a slot became available. Happy days, finally things seem to be sitting into place, and what with a kidney arriving shortly we were in danger of having a happily ever after moment here!

So we merrily went about our business, donating kidneys and generally getting on with the business of daily life. We were blissfully at one with the universe, safe in the knowledge that we had all the systems in place to ensure the best possible outcome for the new kidney. We were discharged from hospital - celebrated Christmas among our nearest and dearest, gave thanks for the amazing second chance at life that our son had been given. Nursed Niall back to health and generally basked in the enormity of what had just happened to our family.

January came - and with it the usual winter bugs and doses so we found ourselves back in hospital for much of that month. I began to get a little frustrated as progress seemed to have reversed so I decided that we should maybe speed up this speech therapy lark. The fact that Rory was still not eating was seriously beginning to complicate our lives. The balance of the anti-rejection drugs was still like playing pharmaceutical Russian Roulette and his lack of normal dietary intake was playing havoc with his sodium balance. This kid needed to start eating now!

With this in mind, I flicked into responsible parent mode again and rang Enable Ireland to arrange a home visit as Rory was still not allowed out in public due to the imuno-suppression.
The feeling I experienced during that phone call will follow me to the grave. I very politely asked to speak to the Speech Therapist, to be told 'Oh her, she resigned before Christmas" "and nobody thought to tell me"? I enquired. A more senior member of staff was called for clearly, and I was assured I would be contacted without delay. Still reeling when the phone rang, I felt surely this was just a mere glitch and of course there are systems in place for events such as this. I explained the situation and was told - "Oh sure you'd have to go to Australia to see her"
So that was it, the plan B for just this type of situation - we'd have to move to Australia - I'm so glad he pointed that one out - as the mood I was in didn't really lend itself to such forward planning! Needless to say the next few days saw what can only be described as a full and frank exchange of views between myself and Enable Ireland.

I pointed out (rather helpfully I thought) that since they had no Speech Therapist they were not now spending their Speech Therapy budget so money could be re-directed to hire in private therapists. The logic of this seemed to be way beyond the bounds of what was bureaucratically possible - the repercussions were un-thinkable! No, no, we couldn't hear of anything as logical as that - this is the public service after all and there'll be no mention of that dirty private word here. Anyway it was completely out of their hands you see it was all the fault of ....... yes, our old foe the HSE. We would be referred to one of their own hospital speech therapists - a therapist was found so end of problem. You would think so wouldn't you? Except, the suggested therapist had already seen Rory in 2004 and deemed him outside her scope of practice - on foot of this we had been referred to Enable Ireland. Are you still with me here? Let me put it simply: in 2004 she deemed Rory to be the honors paper and that a multi disciplinary team approach was necessary - the type which is allegedly only available in Enable Ireland! Now Enable Ireland were sending us back to her in a great hand washing exercise, the like of which, would surely not be found anywhere else in the civilised world!

I do often wonder about that phrase 'public service" - the waiting lists to get in would be the envy of many an exclusive club - thus rendering them, well, not very public really and here we were, actually in the inner sanctum, and we still hadn't gotten any service. So it is a bit of an oxymoron then really don't you think? Maybe they should re name it the Elite Disservice or the Uncivil Disservice? - Suggestions on a post card please!

I returned to the warmth of Temple St and asked what to do. They were suitably outraged - a rather wise stance on their part considering my, by now, murderous demeanor. A letter from our consultant to the HSE was dispatched post haste, stating in no uncertain terms that without Speech Therapy, there was a real threat to a living transplanted kidney. A pretty urgent letter you would think. He even followed it up with a reminder two weeks later - more little urgent rubber stamps maybe? No, lets remember people this is the Public Service - where the cardinal rule appears to be don't deal with the public and whatever you do, don't give them any service! That all happened in January, I have yet to see a reply.

Lets just bear in mind folks that throughout this ridiculous exercise in hand wringing and inaction, there was a little boy who had just got a kidney from his dad and who still couldn't eat.

The saga continues......
Cheers
Ann

Peek a boo

Hi All

It feels strange to be back on the blog band wagon and it's not so easy fitting in the time what with Rory the rascal running a - muck! I thought I should just give you some insight into his progress. He was always a fairly high octane young man, but now with a well oiled 2nd hand, only one fairly careful previous owner, internal combustion kidney inside him, he has become an unstoppable force to be reckoned with! He also has the criminal master mind to match his energy so you quite literally never know what he's going to get into next. So far this week I have pulled him out of the fireplace (unlit), the washing machine, the oven (both turned off fortunately)and the fridge. I have gingerly coached him down from the dizzying heights of the top of the TV set and bookcase. I have retrieved toys and kitchen utensils from, the chimney (are we seeing a pattern here?), the junk pile in the garden which I fraudulently refer to as the compost heap (a cheap effort on my part to imply some non existent eco cred). His finest hour was of course on Mother's Day, which I spent trying to retrieve a plastic model of Sully (Monsters Inc character) from the toilet bowl. Only for the Marigold gloves I don't know where we'd be!

Of course when he's not up to mischief, he's busily soaking up bundles of useful information leaking out from television advertising, then helpfully informing all who will listen with pearls of wisdom such as "Eircom broadband is only €15 a month"! Other favourite activities include singing jingles and sticking tape to his lips ( don't ask - I haven't figured that one out yet myself - but no roll of tape is safe in his presence!). His concentration, focus and vocabulary have come on in leaps and bounds since the transplant. His engagement with those around him has significantly improved also, I suppose now he feels well for the first time in his life he has the time to take in the world around him.

His potential is limited only by the lack of services available to him - that's where we come in - we have to secure them by fair means or foul. We also need to set a precedent so that no other child has to endure this type of discrimination.

I'll resume the battle story in my next post - the brain damage I have endured from my most recent communications with that great nebulous Quango called the HSE has benumbed my cerebral cortex to such an extent that I just can't write about it today!

Cheers
Ann

Blogging Again

Hi All,

It's been a while since my last post and to be honest I thought my blogging days were behind me. We've all been extremely busy getting used to this new kidney, it hasn't been easy! Rory and Niall are both doing very well and indeed both their kidneys are working a treat. Rory's new regime is a challenge - his first tube feed starts at 7.30 am, his last medication by tube is at 6am and it's pretty much every two hours in between that. Fortunately we've been approved funding for a nurse through the night or I dread to think what state we'd all be in by now! Of course if our little man was eating by himself our lives would be so much easier. And so we come to the cause of my fall back onto the blogging wagon...Rory's lack of interest in all things edible.

To give you some background, Rory has been fed by a tube in his nose since birth, not ideal I hear you say but when it's a question of life or death, who's complaining? Normally, by normally I mean in most sane western democracies with a half decent health system, kids like our boy wonder would have regular in put from a speech and language therapist to make sure that they learn how to eat and don't develop what's known as an oral aversion or fear of having anything in their mouth. As you may have guessed, we have yet to meet a state funded Speech and Language therapist. A rare and indeed endangered species by all accounts although there have been some reported sightings in the Leinster region, these however are unconfirmed and will remain in the realm of the urban myth, along with other species such as public orthodontists and ABA schools.

Anyway , I digress, we have been on a waiting list with Enable Ireland, the local state service provider for kids with a physical disability, since April '06. It took us 6 squillion phone calls a mountain of correspondence, 3 appointments with the wrong consultant and a near full nuclear meltdown by yours truly, to actually get on that list. And so every 6 months since then, we would receive a very polite letter from Enable Ireland telling us to be patient that although they were not in a position to offer us any services for Rory, we would be kept on The List. The length of this List was, however, a state secret as was the amount of time we could expect to be kept waiting. Just think of if as the public health equivalent of life in Guantanamo Bay.

Of course the keepers of this List and indeed the reason for the existence of said List was of course, no prizes for guessing it, the big, bad and universally despised HSE! (that's The Health Services Executive to our non Irish friends out there) Now the HSE, as we all know, is indeed the source of all that is wrong in Ireland from the weather to our latest football defeat. I am convinced that if you thread back all the problems of this small Nation, they will in fact sooner or later lead to the front door of the HSE, in much the same way as problems, long ago could have been blamed on, say, The English, The Church or The Youth.

With this in mind and a living related transplant looming, I realised that Rory's feeding problems would have to be addressed by hook or by crook! I knew that the anti- rejection drugs were much more stable and effective in tablet form and I don't need to remind you all of those runny weeks we had immediately after the operation. So, last summer, I donned my crash helmet and decided to make a final run at the door with my battering ram! Hardened old campaigner that I am, having exhausted all local routes TD's and media included, I decided this time, to appeal on behalf of my son's basic human right to eat. I took my appeal to the office of the Ombudsman for Children, any very nice to deal with they were too. They at least observed those ancient social niceties like returning phone calls and actually acting on complaints - all terribly quaint these days. However they couldn't take on the case as I hadn't "exhausted all the local mechanisms of complaint." This, I loosely translated to mean that, there was obviously someone somewhere buried under a rock that I hadn't written to or phoned in the last four years. And so yet again, I photocopied the 6 squillion letters, I wrote another covering letter detailing the 50 million phone calls and I politely requested a prompt response. Then, I waited and I waited until 5 weeks later when I feared I was loosing the will to live, I rang the fossil under the rock to be told that he was on leave. Said leave was of an undetermined duration and no, nobody was checking his mail during this period. Breathing deeply and counting slowly to ten, I explained the situation and was told that he would ... look into it. To be fair he did, look into it, and an investigation officer was appointed. I suddenly began to feel important, an investigation officer no less, had the HSE gone all CSI? Things were looking up. My optimism was, as usual, misplaced - I really must stop doing that, you'd think I'd have learned by now. The investigation officer took a further 6 weeks to report. The report catalogued a labyrinthine list of lost letters to wrong addresses, bureaucrats on leave and not being replaced and other such buck passing pap before finally making the following recommendations and I quote:

1 That Galway Primary Community and Continuing Care (now there's a mouthful !) Occupational Therapy Dept inform Temple St Children's Hospital of the correct address for correspondence.

2. That Galway Primary Community and Continuing Care Occupational Therapy Dept ensure that a written response is issued to all written referrals within a defined timeframe.

Eh Hello? No mention of any treatment then so officer is there? Phrases like " the dog ate my homework" spring to mind here.

But lets remember here folks that all this time there was a little boy who was about to get a kidney from his dad, and he still couldn't eat.

The story continues... If you can bear it, tune in for the next chapter when we will learn about what happens when you get to the top of the list where you meet another parallel universe called The Disability Needs Assessment. I won't go there now as I'm trying to carve this saga up into bite size chunks -

Cheers
Ann