the disability trail to nowhere fast NDA at Croke Park

due to ill health i was unable to attend the NDA invitation to open discussion on part two of the statedgy for implimenting a disability whatever.

this is disappointing, but reports have filtered back which states that it was pretty much more of the same and being spoken to or down to in the grand old style that is typical of government funded organisations.
this sort of rhetoric of huddling together all the disabled interested groups and organisations and asking their experienced views has been done over and over and over again, for the past twenty years....nb lunacy act 1800 and something still on the books of good old Eire.

we have been asked to write, draft and submit  ad nauseum to the horrible drafting of a disability agreement part TWO no less, that is a 'strategy plan TWO no less'

which basically means its a draft.
just like the one that has hit the dust before this round, and the one the bite the dust before that again.

we are absolutely brilliant at this.
we hand out cakes with one hand at these events and speeches and 'how great thou art' and all that, but nothing ever becomes of this.

nb the lack of ratifying the Human Rights Convention on the rights of people in Ireland with disabilities.
the lack of this shot down a case in court today where an autistic man was hauled off to the police station in cuffs, yep, but because we have no human rights and it doesnt apply in irish law the father who took the case i believe lost this case.

its so idiotic that to be part of something and our gov says its proud of being a part of europe, a part of the EU, the UN and all we still won't agree the Human rights convention for those with disabilities!

so we have no rights.

thats part one of the blog over, and it doesnt get much better.

how it acts out for those who are sick and disabled too.
we are not doing too well.
i am not doing too well.

news filtered out to me over the past many days that there was a suicide within the hse and of course you wont find that in the media.
but it occurred.
i want to know why it did, because if its anything like the brink ship that happens when you are in profound distress as a sickie in holy ireland i can well understand why.

the HSE is a detestable organisation.
raftered up and shored up by a massive legal department, it is need of abandonment and got rid of, grand style and start all over again style.
no one in ireland has the wit to know how to do this, how to put something else in place and how to deal with the dregs that remain.

what we do in essence we sack the vile and keep the good and there are some good but there are pretty vile people there i have to say, they usually are the gate keepers of the cash.

they have no soul, no mercy and no empathy and yet all are qualified in some healthcare field, we are not speaking of accountants or financiers, we are speaking of managers with a primary skill in a healthcare capacity given the remit to manage the finance, something they cannot do well because its not their primary function.
the function of healthcare officials is to be helpful to the sick.
the money minders should not be managers of departments, i am sorry to say they shouldnt.

we do not 'do' management well, but mostly most know already that the HSE have this down to a grand and accomplished scale of zero out of ten.
they just dont seem to be able to manage it.

things like top ups have to stay because someone didnt think of a way out before it was agreed to offer top ups.
junkets on some ridiculous overseas rub shoulders affairs are rampant, most i believe go undetected.
we also have of course, inability to sack a civil servant so if you are shite at your job you cannot be sacked.
but we need to be able to sack em, just about everyone else is if they are lousy at their work.

rules such as these:
they only have mattresses in the HSE which they can give out to sick in the community which are water proof and bedsore preventers.
they do not have the sophisticated skill to tell a person or advise a person how to sleep better when the mattress is causing deep pressure and pain from an entirely different cause than old age, incontency and inability to move.

therefore in a myriad of conditions for people who need to sleep well only bed sores are cathered for.
thats irish.

another daft as a brush rule being if you do not have a diagnosis you do not get care
but then what about the many rare diseases people have who are struggling with the unknown although everyone knows a person is significantly disabled it can bar you from care without the defined diagnoses of a limited known few, and believe me there is a limited known few when many are sick and on death's door sick from an ill defined illness and disease which is genetic in base but yet the defect may not be found soon enough or ever will at all.

that leaves you out in the cold.
heres another, what about having a rare disease that is considered now eradicated therefore it doesnt exist at all, but when was it eradicated, before or after you got it.
well after in my case so i still have the rare disease.

you cannot dumb down everything to a common denominator and then leave the rest off the  radar for attention.
'have you got that in writing my neurologist asks' when he wants to know if my rare disease has been defined as i was told it was from the expert unit.
patients of course are liars, they couldnt tell the truth for love nor money.
we are pathological liars, so if we do not have a name it doesn't exist.
ostrich ireland land of the upturned arses.