Friday, 14 December 2012

The Value Of Care

I read an article by a carer recently that really struck a chord, the thread to her argument was that while she feels valued and satisfied with many aspects of her life, in her role as a carer she is made to feel like a scrounger. Obviously it got me thinking, and I wondered about my own terms and conditions. I tried to fit my work hours into the Working Time Act 1997, but like any parent I am in breach of so many rules and regulations relating to time off. That's our role as parents we knew that before we took the gig but it's when our kids have extra requirements: special needs and medical problems that we totter into the 'grey' area of being their carer. This 'greyness' is a bureaucratic view and not a parental one.

So, for the sake of argument, lets just look at what a parent of a child with renal failure brings to the table, like any parent in this category I am more than competent at the following duties: I can fully operate a peritoneal dialysis machine,  I can give subcutaneous injections of EPO, I can insert nasogastric feeding tubes, I can take blood from a central venous line, I can competently carry out a full set of observations; check blood pressure, temperature, pulse rate. I know my way round beta blockers, calcium inhibitors and vasodilators. I know that Ranitidine - although it shouldn't - sends Boy Wonder's LFTs through the roof, I know that Atrovent - although it shouldn't either - brings him out in a rash. I know that Minoxidil is a drug of last resort because it makes him very agitated and (believe it or not) hairy! I know how to balance his fluids and that any imbalance can affect his Tacrolimus or his Creatinine. But I'm not special, any parent of a paediatric renal patient knows this stuff - we have to!

The more 'soft' skills I have acquired are no less useful but maybe a bit harder to quantify: I know how the system works, I know how to complain and to whom. I know how to negotiate to get a better outcome. I know when my son's sensory integration is off balance and that we need to take action. I know what action to take and if I don't know, I know who does. I could list on but what's the point?

The role is tough but it at least it is in the natural order of things - I am his mum and it is my job to care for him. I take great satisfaction in watching him exceed all expectations, at the ripe old age of nine he is still alive - and for a kid born with no kidneys that is some achievement. But he is not just alive he is really living!

I'm not caring for an elderly relative who may be suffering from dementia - someone with whom I may have had an ambivalent relationship throughout my life. I'm not watching someone deteriorate daily. I'm not locked in a house 24/7 with no Home Help or Respite care. I'm relatively young (don't dash my delusions!) with a modicum of energy but still I am made to feel worthless, like my skills are not of value, like I have nothing to contribute.

I will get over these feelings because I have to and because I refuse to let others make me feel this way. I know that I can't change the system but I can change to way I react to it, however it is getting harder to bounce back. Carers are being subjected to death by a thousand cuts, they are tortured daily by guilt and the grief of their position and now the Government values their work at exactly 20% less than they valued it this time last year.

How is my work valued by society? In terms of classical or even Marxist economics (since we have so-called Labour party in Government), there is a value in the 'use to society' of our labour but how do you quantify the 'real cost' or 'absolute value' of the use we provide to society? We can't be fired and resigning is clearly not an option but what would the impact be on society if we simply didn't exist?

Is it because the people for whom we care are not seen as valuable, revenue-generating entities? Would we get better terms and conditions if the people in our care were High Court Judges or Merchant Bankers still capable of generating value? Since we are paid (badly) by the state do we fall under the terms of The Croke Park Agreement? I can't see the public service unions accepting a 20% cut in allowances coupled with an increase in productivity so why should we?

The question is: what are we going to do about it?


Wednesday, 21 November 2012

Support for Praveen.

The exhaustion that followed this last conflict-laden year has left me numb. I don't know what to say anymore.

This morning I realised that the system has almost managed to steal my voice, it has ground down my cognitive faculties, silenced my vocal chords and drained the last drop of energy from my soul.
I was curling up, closing doors, contemplating a life of just shutting up and generally feeling very sorry for myself.

Then I heard the voice of Praveen Halappanavar. The dignity of a recently-widowed man who's wife was denied life-saving medical intervention and allowed to die within a mile of my home shook me to my core.

Whatever your position on abortion, it is impossible not to be moved by the story of Savita Halappanavar's death. I keep playing their discussions with the medics in my head, I have had many similar ones on Boy Wonder's behalf. I know only too well the wrath that follows the reasonable request for a second opinion. I can empathise with his lack of trust in an internal HSE inquiry into the events surrounding this terrible tragedy; I have been waiting for three years for an internal report from HSE-funded Enable Ireland on how they managed to endanger my vulnerable son with a speech therapist who had been deemed a threat to public safety in California.

There are members of the Irish establishment, who are so accustomed to treating the general population with such distain that they react with aggressive-disbelief when challenged. I can only hope that the international dimension to this story will save Praveen and his family from the bully-boy tactics that have been used on me and my family.

It is up to every one of us as citizens of this state to demand a full and impartial inquiry; to hold those responsible to account and to ensure by force of law that this can never happen again. Savita and the women of Ireland deserve nothing less.

This story has stirred up old hurts I thought I had dealt with, it has been a difficult week but one which has reminded me to remain dignified and steadfast in my refusal to be bullied.


Tuesday, 14 August 2012

Big Victories and Small Mercies

After an agonizing wait, and many a confused phone call, I am happy to report a big bright shining light at the end of our dodgy u-bend tunnel! We've got a surgery date and we are packing our bags to go to London's Great Ormond Street Children's Hospital!

The plan is to move Boy Wonder's stoma site to iron out the kink in the pipe and improve the quality of his urine drainage, which hopefully will reduce his creatinine levels thus allowing us all to exhale once more. That's the plan - lets just keep everything crossed that it works!

While they're 'in there' - don't you just love it the way surgeons say that? 'While we're in there we'll take a look around' - you'd swear it was into your living room they were going, just to measure up for curtains like! While they're 'in there' they'll be measuring up his internal plumbing for matching fixtures and fittings with a view to a whole new interior 'look'. This 'look' will ideally include the latest in junior indoor conveniences like a new bladder!

The new bladder is a long way off but this is the first step - a bit like meeting with the architect to discuss drawing up the plans.  After their time 'in there' the team will then move on to the Ikea catalogue of internal plumbing - I'm imagining a sleek swedish affair with streamlined tubes and top-of-the-range catheters but then I've always had a thing for a well-designed interior!

So between now and the 29th of August  I will waver between relief and terror, I'm trying to keep the wheels on the wagon but I can already hear the back axel creaking. I will busy myself with preparations, logistics, lists and secondary lists - all in an effort to avoid thinking about what is actually going to happen: surgery in a new hospital, in another country. Boy Wonder has already had more surgery than I can count but it never gets any easier for me. If anything it gets harder.

I will keep my eyes on the prize and plan; that's what I do. In the meantime we have a big date with some gooey cake to celebrate a 9th birthday in style before we take off to start yet another chapter in this awfully big adventure.


Sunday, 27 May 2012

Faith, Hope and Rory - Plumbing Part Deux

I thought I was pretty shock-proof at this stage. I thought the Irish health system had thrown all its dirty tricks at me: like when they sent Boy Wonder to a speech therapist who was considered a threat to public safety in California but kosher to work with kids in Ireland, or like the time a local HSE manager wrote to inform me of how much my son had cost her, or that whole ridiculous palaver over the shoes. Experiences like these tend to mark a person, you build up a certain amount of scar tissue leaving indelible reminders of battles waged, won and lost. While I no longer had faith, I was still in possession of some modicum of hope and I had prided myself in being fairly ready for any sucker punches that would blindside any novice. Big mistake.

It all started, innocently enough, with a letter from the UK surgeon, detailing the rarity of Boy Wonder's anatomy (see - it's not just his mammy who thinks he's special) and how that rarity coupled with the small population in our country would make it unlikely that the specialised surgical skill set here would be doing enough of this type of work to give our Boy Wonder the best chance at continence. So far so inoffensive and indeed you would be forgiven for thinking that form signing to move the surgical care to the UK could be deemed a mere formality.

No way José! The first tactic was to ignore the letter - for a whole month they ran around Crumlin hospital with their fingers in their ears shouting 'la la la can't hear you' whenever the issue was raised. Boy Wonder's re-admission to hospital last week with a dangerous creatinine level forced the situation to a head.  His condition was moving from chronic to acute; action had to be taken. The nephrology team in Temple St. called a meeting to finalise the paper work for the E112 application which would get us on a plane to London as soon as possible, except it didn't work out like that.

The dragons huffed and puffed and threatened to blow my house down. There was no way a surgeon was going to sign a form to say he couldn't do a rare procedure. A 'work-around' fudge solution to filling out the form was suggested that had more loopholes than your average kitchen sieve. I naturally refused to be party to any application that didn't give my son the best chance. Eventually common sense and very scary blood results prevailed and a wording was found that would allow the egos to land, but it did leave me wondering how the Hippocratic Oath and the best interests of the child had been completely jettisoned in this cesspit of political posturing.

I've had a week to process what happened and to be honest I'm none the wiser. The scar tissues of past battles have just split right open and the wounds are weeping uncontrollably. I have medicated myself with industrial quantities of carbohydrates and wine, my usual go-to solutions in such cases, it has taken higher doses but it seems to be settling.

Now all I have to do is steel myself to leave the state to have a whole new team in a different hospital carry out surgery on my son.

'Simples' she says reaching for yet another slice of cake and a robust Rioja!


Sunday, 22 April 2012

Plumbing Pitfalls Can Include Politics and Pit bulls!

Once again I find myself stuck in that no-man's land that stretches between the best interest of my child and the trenches of the HSE troops. Boy Wonder's plumbing issues have been more than well documented here so I'll pick up where I last left off.

The kink in Boy Wonder's tube has caused a steady up-ward crawl of his creatinine levels and an equally steady dilation of his transplanted ureter; hardly an ideal situation for an eight year old with a second-hand kidney. So our renal team in Temple St. figured it was time to involve the Urology team in Crumlin Hospital. Now here's another classic HSE-ism that my logical brain is at a loss to comprehend - why doesn't the national renal centre in Temple St. have a urology department under the same roof? Why do all patients have to schlep across the city to the attend the crumbling circus that is Crumlin Hospital?

Our attempts at getting an appointment were stymied at every turn with a fire breathing dragon who answered our calls in a manner that should only be reserved for cold-calling, PC-virus-scan sales people, who always mange to call as you're just putting the first forkful of dinner to your lips. Now correct me if I'm mistaken here, I can't understand why we represented such an inconvenience to this woman as I imagine the job description of a secretary in a paediatric hospital would include taking calls from parents wishing to make appointments to see specialists.  As our appointments were repeatedly scheduled and then cancelled over the course of ten long months, Boy Wonder's creatinine climbed and his ureter dilated in direct proportion to his mother's rising blood pressure and ire.

We eventually breached the moat and silenced the dragon back in November. Our meeting was as confusing as it was infuriating. We were told that since Boy Wonder's ureter had dilated beyond the point where it was considered safe to plumb into a bladder fashioned from his bowel; the agreed long term surgical plan for our boy was no longer possible. As our only option of continence for our 'wee' man slipped through our fingers, I was naturally proper pissed off! Had we not just spent the last year trying to get to see this man who knew the ureter was dilating and the clock was ticking?

So I did what any mother in this situation would do: I got thick - very thick in fact and demanded a second opinion. Last week, amid dire warnings of even more dire consequences if we proceeded with our legal right to a second opinion, we finally made it inside the doors of the hallowed ground of London's Great Ormond Street Children's Hospital.

Thanks to that consultation, we are now the proud owners of some different options for our boy, but there's a hitch (isn't there always?). We need the dragons and Pit bulls at the gates of Crumlin to tell the HSE grey men in suits that the team in London are right before we can proceed! Now what are the chances of that happening anytime soon?

Answers on a postcard please!