Yes. yet again it's Bloggy-thing time, and this week has been a particularly positive one, although perhaps marred by one or two (well, definitely one) little niggles.
We are, once again, talking about my recent diagnosis of Multiple Sclerosis which has joined the already existing conditions of Spina Bifida and Pernicious Anaemia to form an all singing. all dancing, triple threat, disease dream team. It puts such tag teams as The Road Warriors, and The Hardy Boys to shame it really does.
In fact, more specifically, this week's post delves into the appointment with the MS Specialist and the fun I had actually attending it.
Let me explain.
Paging Dr Google
The aforementioned appointment with Dr Al-Din, the specialist in question was one that I had been keenly anticipating. As we near the two month mark since my diagnosis, and having been warned against doing too much in the way of research myself (do not consult Dr Google!), it was the chance to get some important questions answered and get some actual treatment and management of my new condition put in place.
It was therefore, with a sense of some trepidation that I awoke especially early on the morning of the Thursday just gone and made myself ready for the pre-arranged transport to whisk both myself and my wife, Tina, to Pinderfields hospital, some thirteen miles away. Thus began the niggle I mentioned. In all actuality it may have been more than a niggle. Perhaps a vexation. Maybe even a tribulation... In fact, let's be honest, it was a full-blown-swearing-hissy-fit of an outright infuriation.
Calm. Breathe.
A Tall Story
The reason for the slight case of righteous fury can be attributed directly to the ambulance that was sent to pick me up and take me to the hospital. Don't get me wrong; the vehicle itself was a lovely example of it's type. Resplendent in it's NHS regalia, of sufficient size to carry wheelchair, wheelchair user plus wife, perhaps even an inpatient or two on top of that, and seemingly of good working order. It even had the regulation four wheels, engine, and driver, and had managed to find its way to our home a full hour and a half before the allotted appointment time. So far, so good.
What wasn't quite as good was the nice lady driver of the ambulance, after helping us and the wheelchair out of the house and up to the ambulance, enquiring as to the whereabouts of my wheelchair's footrests. I explained to her that I didn't have any, being around about six feet tall (unusual for a wheelchair user), with legs that don't bend all that well. This was unfortunate, I was told, as it meant the nice lady driver would be unable to let me get on her lovely ambulance and take me to the hospital.
I was less than happy.
Silly You
To put you in the picture, since the MS diagnosis I have been unable to drive. This is being reassessed by the DVLA on the eleventh of this month, but until then the way that the MS has affected my eyes means that getting back in the car is inadvisable to say the least. This is what necessitated the hospital transport, something I'd arranged some four weeks or so earlier and at which this requirement had not been mentioned.
Now, it is true that when seeing the MS nurse, at the same hospital, some two weeks ago, the driver who had taken me home had pointed out that I should technically have both footrests and armrests on the chair in order for it to be technically 'safe' to carry, but at that point I put it down to a nasty case of jobsworthiness and on returning home, promptly forgot all about it. Silly me.
Dem's Da Rules
Still, here I was, the now not so nice lady driver, lecturing me on the same point, and point blank refusing to take me to my, by now increasingly imminent, assignation. There was, she explained, nothing she could do It was a health & safety regulation (have I mentioned we were going to a hospital?). There was no alternative given. No attempt to solve this apparent problem. No replacement transport offered.. And the clock was ticking.
You might be thinking that this is not a huge deal, in the bigger scheme of things, but at that time, it really, really was. It had taken weeks to get to this point. Weeks to get this close to actual medical intervention and to discuss such priorities as working, and leading something close to a normal life. Now it was about to be snatched away from me thanks to regulations. I'm afraid to say I may have sworn.
And Breathe..
Less Questions Than Answers
As the by-this-point-definitely-not-appearing-on-my-Xmas-card-list lady driver sped away from the scene (to be spotted not too much later at the hospital, arriving with an empty ambulance), we were left in a bit of a pickle. Tina rang hospital transport who, helpfully, are not open until the exact time of the appointment and we stood outside our own house examining our limited options.
Now, at the moment, money is a little tight. I am officially still employed, although I haven't seen my work station for quite a long time. This means that my wage has dropped significantly and currently stands at the Statutory Sick Pay level of £89.35 a week. That particular week a further hole was made in this less than extravagant amount, by a twenty pound taxi that was the only option guaranteed to get us there on time. Hello push, meet shove.
Thankfully it was an expense that was merited.
Dr Al-Din is brilliant. A small, neat man who explained everything and gave me several treatment options, explaining efficacy and side effects in each case. He had the time to speak to me , Tina and my parents, (who had met us there having journeyed from my native Leeds), and answer the questions we had. In fact he actually answered most of them before they were asked. It turns out that carpal tunnel type symptoms I had last year were probably an earlier MS flare up and that this is my second attack. The shaking hands are definitely nothing to do with it.
Legalese
As for the transport, well, after my rather lovely mother had complained as only she can, we were told its a matter of errant limbs getting stuck underneath the chair in the case of accident, and when being pushed up the ramp into the back of the transport. Which is fair enough but of course nobody asked if I could raise my legs and keep them there. Which I can.
It seems that it is a case of counting all wheelchair users as being one homogeneous group rather than individuals is their own right and taking into account different needs, abilities, and requirements. There seems to be a flavour of avoiding responsibility, both on a personal and organisational level, rather than taking into account personal safety, and I have heard the expression 'being sued' a couple of times. It's a shame if that is the case as, personally I would have happily signed any waiver given to me in order to minimise the much greater risk of a lack of treatment (coupled with the increased stress) resulting in a further MS attack.
Forewarned Is Forewarned
Such a waiver, and perhaps a board to slip underneath the derriere of the wheelchair user and rest their legs on might go some way to resolve this impasse. A speedy provision of a replacement ambulance or other transport would also be a measure I would count as reasonable, or even, if that proved impossible, and offer to cover the costs of the taxi. A mention of the requirements and the result of them not being met being explicit at the time of booking also seems wise.
The health & safety rules in place seem inflexible, impersonal, and without any provision for exceptional circumstances. There is a lack of a back-up plan and no consideration as to the importance of the missed consultation or therapy. I can only speak personally, but, in order to keep the meeting with Dr Al-Din I would have set off a week ago. On my hands and knees. Over broken glass. Naked. I can't be alone in this.
Anyway, enough of this ranting I will now shout for a stepladder to get down from this increasingly high horse and leave you to the rest of your day.
Until next time...
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