Thursday, October 20, 2016

A week's experience at all the irish hospitals and with the HSE

what happens when a loaded HSE tries to take short cuts - seriously!
this is the look before the HSE take a crash course through my life and times - seriously!
this was a serious week.  Yes, you can call it that.  It was always also going to be 'heavy going.'
it started with the battle of how both my twin and i were to get to the many appointments we had lined up for this week, one medical appointment a day for the full week.
argument that i simply couldnt drive the van with two wheelchairs the length and breath of dublin environs being so unwell, is self evident.
i do not 'do' even when well, far flung areas where i know the geography badly, i learnt to drive at 53 and i am tired and ill.

arguement won, that i could end up a serious danger on the road if made do it got the HSE agreeing to transport us to the various hospitals, this was a major coup.  I am very relieved, absolutely relieved, unbelievably relieved.

but relief turned to farce as we discovered how this was all going to work.

it seemed as if it wasnt as simple as ordering a taxi that could take two wheelchairs, as we were going to the same places.
no not that simples.
we both asked at the beginning of the week or end of last for help.
one sister was sanctioned for assistence but the other wasnt.
in fact i didnt even get an answer.
the next we heard was, well i could go in the twins taxi but couldnt take my wheelchair with me. er?
so one could travel in ease and hey, put ann in the roof rack or maybe put her in a sort of transport carrier attachement at the back but defo not beside my sister.
the arguement wasnt helped when we heard that the HSE official didnt fully realise that no. 1 if i could actually walk or not or that the taxi couldnt take two wheelchairs, our taxis are only insured to take one.
the reason being i feel not so much the insurance policy but the fact the taxi man would really spend money on getting a second tie-down for a second wheelchair, which is very 'doable'
so when that problem was realised the answer was - two taxis.
two taxis for two women going out from the same estate with two wheelchairs, to the same destination and coming back to the same destination.
on one occassion we didnt need a wheelchair taxi.  that got both the taxi firm and the HSE mighty confused and a wheelchair taxi was booked and then unbooked.

the cost was enormous, i mean really enormous.

the total for three hospitals came to 544e for two women sick in ireland of today.
that is economic murder if ever there was, sure who could sustain such a fecking waste!
and it was a waste.
but then so too is monitering this all.
we had taxi men asking us did we have 'vouchers.'  No, we knew nothing of vouchers, we were told they couldnt take us home from the hospital without 'vouchers.'
"hey, we know nothing about vouchers, we were told to ring in and say when finished but know nothing about vouchers.
that caused massive stress on two sick ladies.
we then had
"be there, stuck in traffic."
"how many taxis are on the way"
"is there one coming for my twin"
"outside the hospital waiting for you" (taxi man)
"if you are how many taxis are coming cos were heard two were and we now had one outside, but is it one of them two?

we had taxi men singing that 'oh for the two lovely ladies my children will have steak for supper not sausages.'

I dont find that funny when the country is fucked.

Nor do i find it funny to sign a black money docket at destination and when i look up at the meter i see the cost and write it in the gap.

"dont put the money in the box" he says, "we havent finished yet"
we have mate we are at destination, i am about to sign as the taxi had stopped we very much had finished.
so signing a black docket is the same as signing a blank cheque.
and the paymaster is the HSE, no monitering done, and the taximan's children will have steak and the HSE no money.

we are wrecked.

i am wrecked
and astounded.
no wonder my country is fucked i say.

the first trip a taxi was ordered for two hours before the appointment, and the taxi arrived fiveteen minutes early at my twin's place.

she rings me and said he had arrived early.
"ask him when one is due for me, will you twin?"
she asked
he then comes to me at my door and remarks, "i wasnt supposed to be at your sister and told to pick up you"
he says,
"so what about my sister?" i ask.
"another taxi is coming for her, dont worry we will be on our way."
so we go.
at the hospital, i ring sister, "where are you"
she had not left her estate!
she flew in and felt life wasnt worth it as the taxi was going so fast and she feared for her life.
she said she was scared in the flipping van.

OK we there anyway and two eclairs down we have the physio as appointed.

now this was to be this wonderful assessment of need.
you got that now?
this was the 'big un'
like, this was what was really needed, neurophysiotherapy assessment of need for very sick women.
it went something like this for both of us.
"what can i do for you?"
"huh?"  i respond
"what are you here for?
she had no notes, no files, no information and she was very young.
we go through a basic assessment of strength, nothing special and all done before.
and i get wait for it, the famous print out.
three exercises to do.
lift the arms up over your head a couple of times.
lift your legs a couple of times.
no i dont know what the third one was as its long gone in that bin.
"it hasnt been proven that hands on therapy is of any benefit."
"oh," i say, "it hasnt?"
"thats interesting," i remark because to me its the only type that i have found of benefit, its hugely beneficial.
"are you really telling me that because we have no staff and too many sick people its convenient to make the statement that hands on physio is of no benefit or if you have money you get it and if you dont 'its not proven to be beneficial?
so you can say it anyway you want but it IS beneficial and it has proven to work in the past.
but now we are a broken country someone somewhere decides it isnt.
for poor anyway.
not for rugby players or tennis stars but for the poor it is not of benefit.

we go for a cup of tea in tears.

it was so so pointless to bring us over for that.
that cost a whacking 63e there EACH and 73e back EACH, do the sums on one trip, a professional wage for the physio, a cafe bun and tea and we have a few people employed, a taxi man eating steak and twins bereft for the days outing of waste, for both us and the HSE!

Next trip deserves a book in itself.

we get to go and get our HSE shoes, the ones i had so much hope for and waiting for really classy ones since 2009.
now by classy i mean ones that will not cause me to fall and snap shoulder muscles, rip toenails, fracture rib or fracture wrists and nor tear half the skin off the shin bone in another fall.
so for well over two years now no shoes even worn, but since yes, at least four pairs, all causing injuries.
so i was highly excited now i was at a 'centre of excellence'
well was i?
and who was listening to need and what actually was given and why?
Jez i took one look at them and announced inside my skull and brain, "holy moley'  look at them ann!"
i was sitting speechless.
words couldnt come 
"lovely colour" says the lady giving them to me.
i manage a sort of giggle and 'yes, lovely colour, yes.'
i put them on.
'how do they feel?'
'fine, fine"
this is the different 'room' a nice hot water bottle feeling and a slumber
i am gone to a different room space inside my head i am in unreal time, i am zoned out of this one now and forever more.
i thank her and i ask 'how much did that knock back the hse?
"about 900e" she remarks.
"oh, i see,right, lotta money then"
there clearly are no further words to say
"right, see you, thanks"
i go and reach the twin looking expectantly at me.
i raise my eyes to heaven when i meet her eyes out on stalks.
i sit numbed and she is summoned.
i sit there feeling the clumpers at the end of my extremities.
the shoe on the left was paid for by insurance and is fantastic - i didnt know what was going to happen when the HSE ones came and feared the worst - i was right to do so.
the left weighs 11oz and is soft and gentle
the right is 14oz and is thick and feels like cement and painful.
i clearly was right to be wary and prepared the way for the outcome, i was so clearly right - no happy clappy feet after this encounter with HSE clumpers - yet again.
further words fail me
words don't work anymore faced by this
or this...
i am left speechless...forever more, i think
i am not a happy bunny with very unhappy feet.
my feet are encased, in concrete, they burning with heat and there is nothing i can do.
i am encased.
its all very distressing as i feel it all too badly and my neurosensitivity is getting the better of me.
they come off and i revert to the slippers, i doubt they will be worn again.
i sweat it there in inner pain not knowing what to think, do or what to say forever more on shoes for ann.
my twin comes out with a neat brace but she not too keen on the insole, which sticks up into the arch which is a cavity due to pes cavis.
we both go home, i am an unhappy woman.
the money side is mounting up.
next trip then was to be a sorting of an issue that is frightening the life out of me, another very long taxi journey and another consultant.
i am well prepared and have my homework done.
i get only general bloods.
there is a heated debate on what the hell general bloods would do for a metabolic issue.
he cannot explain and i do not believed he had heard me.
why did he bring me to the other side of dublin for general bloods and not a metabolic work up?
why could he not have had a conversation on the phone if that be the case and i get them in my gp surgery on monday and i have an appointment then.
sure jez metabolics is more sophisticated than general bloods.
so all the doctors in the uk suggesting my malaise to be possible pre-synope, dystaumonia, POTS or hypoglycemia has not been tested for, i wasnt in the UK for these, but they listened to the symptoms and asked for these conditions to be tested for.
you wont get that on general bloods.
i come home and count the damage of the week so far and what i want to do.
i want to escape a country going down so bad its taking its sick people to an early grave and if not then it will through suicide.
the cost in financial terms for hse this week for two women has been 1,384e  i have not counted in my twins special leg brace nor the consultant's fee, the phsyio fee nor the othotist's fee, so for all that money we didnt as patients come out with alot.
we spent a full week travelling to doctors, for nothing.
i mean nothing at all.
wasted. i am wasted and shattered.
money to burn so they have i say if they cant do it better than this.
thats my week in economic, physical, psychological and outcome terms.
these are not terms of engagement but disengagement from my country.
i hastily write to another consultant, two in fact and say 
"get me out of this country"
for a start it would be cheaper and i may get some place.
not this way i wont.
i suggest you now look at some pictures. they are all worth it to digest the enormity of this farce
living at the extreme end to THIS i guess is a feature of my human's life, but clearly it wont be equal to the calm of Ana And Maggie as they stay cool, calm and collected and rest while I am too tired and too tired 
i am too tired now to continue and bloody glad the week has nearly come to an end.
raging i decide i have to get a life outside sickness or something will defo 'give.'
or i shall commit a murder and end in jail.
i kid you not.

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