Torture, human torture is what the HSE ireland is skilled in - 100 years after banishing our oppressors (!)

i cannot believe my fight for a meaningful and peaceful end to my life is still ongoing.

that is, for the Irish HSE to help me in my chronic, significant disability of having a progressive, neurodegenerative, neuromuscular disease.

every way i try i get twarted, over and over i tell them, over and over they ignore what i have to say.
it all started after this...
here my twin is...standing in my 'sitting room'  this was a unit for one individual who HAD NO disabilities, the argument was that it was meant for a person with a disability, already a wheelchair user, with a progressive disease and likely to get worse....this whole debacle started by the glorious OT manager in my area overseeing my healthcare needs, i was persuaded to ask for rehousing, she had contacted the council, she had spoken to the council, yet the council put me here....unfit not only for human habitation but in an area of men, prodominantly drinkers, and i was single, older and sick.  i couldnt have coped.

there were eight floor boards from fire grate to sofa, the only item i could fit in this unit and i had to get rid of a brand new one and buy a second hand as my nice one wouldnt fit, i was downgraded from a two bed to a one bed.  argued by three different medical consultants not to move me, argued by the OT about my housing needs..

my belongings stuffed everywhere, just everywhere.  there was so little room

look at the dirth at the base of this toilet, for a woman with immune difficulties, this was the better room all the rest had to be redone due to rot, mould, carpet pins left sticking up and dirt.
it was so small i couldnt even open a manual wheelchair in order to sit in it, and i was rehoused due to my disability, words fail me even still.

this individual is now legally of age where i can put this up, this was the incident that saw me leave, i was physically shot at after far more harrassment before this point, i knew she was there above me, i was below her on a swingseat and she had this gun i found five pellets by the swingseat and two more by the back door

the chaos had me in a personal hell and in awful pain- a state i am still in

with no help for me at all coming from social services with whom i had been with all my adult life, margaret and i sold what we had as capitol a small tiny town house, margaret moved in with me, slept here on this short sofa for over eight months with a diagnosis of parkinsons disease, yes of course we have family, they turned away, a blind eye and they could have helped and had the means to.  now due to my circumstances my twin coming home sick and disabled herself ended on this, i have to say the shock for her was enormous, yes we have family, if they read this
-WHERE THE HELL WERE YOU?  WHERE WERE YOU EDUCATED?  DID THEY GIVE YOU THIRD LEVEL SCHOOLING AND A POSH SECONDARY SCHOOL TO TEACH YOU TO TURN THE OTHER CHEEK AND LEAVE US ALONE IN ALL OF THIS?  IF THEY DID, THEN DO YOU THINK I CAN OWN THAT SORT OF MIDDLE CLASS ETHOS, NOT ON YOUR NELLY I COULDN'T.

this photo and an article ended in 'journal.ie' after which i was promised better shoes, its now 2016 and i am still without supportive shoes for deformity of feet and weaker ankles and muscle wasting, i have fallen and snapped both my shoulder muscles completely, torn an achilles tendon, torn a shin with a gaping wound taking months of dressings and time to heal, i have fallen and been in so much foot stress i am now to have my hands and feet re x-rayed for nucleur scanning found anomolies where the dye seeped into the bones of the foot, heels and also wrists, this is called fracture seepage, and the feet are agony, still no shoes.

i move to a new area and still have trouble with the Irish HSE, the same OT manager who illegally interfered with my adaptation grant, also made me give this back before she allowed an engineer fix a 13yr old banger of a wheelchair.  it had gone into a wall opposite st. vincents, losing a wheel, they refused to fix it until i returned this, there are no policy documents to say i couldn't have both, many do and i had just paid 450e for having this scooter repaired, no of course i never saw the money!  but they took the item hardly worth that much anyway, they still insisted on it back.

this is me on the swingseat the day after i was shot at.  it reflects my present state, my physical shock and my mental despair.
i am hounded by the hse, i am out of the county i loved so deeply, i am alone, left and abandoned knowing no one here at all, just despair and the HSE do not feel any sense of duty towards me at all, none.
this is called our famous HSE, our healthcare services.

if you intend to come to ireland during our fabulous 100 years of celebrations for being a 'banana' republic, enjoy the schenary by all means, but do not stay, especially if you are sick or intend becoming disabled, incapacitated or in any way unwell.  because this ISNT the 'world's goodest country'  its a hell hole.

if you want to do anything, condemn our standards of healthcare, our human rights violatations, for which we are legend including being only one of two european countries who have not ratified the human rights convention for equality for those with a disability.
the irish state is not a state. it is lawless, it is corrupt, it is perverse in every shape or form.  it is beautiful.  very beautiful, we laugh alot, but maybe thats all the beer but we also have a high emmigration rate, an even higher homeless problem and a worsening poverty problem, we have a state in chaos and a healthcare system which is terminally ill.

it is not a safe state by any stretch of the imagination.
like another very catholic country it is ran on mafiosi principles.

What's another Year? Post 2015

happy New Year - from ANN!

Happy New Year from Mags + Saffi!

Well, exactly...'what's another year?'  when this song won the Eurovision song contest i was in hospital for an entirely different reason, but said the same to myself then...'bloody hell, what IS another year'.

Fast forward to the age of 63 in Ireland, during austerity, commercialism, capitalism and lack of decency and any democracy that i can see or tell.
In the Ireland of utter abandonment by its government, by its public health care services.  We have the young ones, with intelligence and in despair leave these shores - yet again.
Over and over again Ireland exports most of its talent, generation after generation.

We fail to keep them here.
We fail our very own.

But for me personally, what can i say about 2015?
I can say it was a dreadful struggle.

Its been so bad that suicide has been thought more about than ever before and my life has taken on a cast of, sort of despair rather than any consideration for joy, living and purposeful engagement.
Most of the year was attempting in despair to get some care about my health demise and this takes every day of the year.
Unfortunately i found it impossible to move things forward, as did most people.
I am not the only one being abandoned.
the sick just are not being considered at all. And disappointingly, we are not considered by the family either.

it's important to remember, before being sick and disabled i had what is classified as - A LIFE - as an accomplished Artist.

 WENT TO A FABULOUS PLACE CALLED 'THE KIELDER TRUST' TWO HOURS NORTH OF NEWCASTLE.

they had cottages there for rental but in the main area they had a large cabin style building dedicated to the disabled.  The disabled, that was,  who were going into respite.  This was indeed the most fabulous respite care centre i have ever seen in my entire life.  Not to mention, its 'HOLIDAY'  more than respite in a beautiful area about two miles from Newcastle.
the young people who worked there were truly dedicated and terrific.  During the day nothing was too much for them.
the food too was top class.
the sick and the dying and the disabled were cared for VERY WELL, they were in 'respite' but really on holiday.  At night they opened a real 'Bar' so the sick could drink, real drink and have wheelchair races drunk and disorderly, style.
here now really, respite is considered three weeks in a bed, a hard one, with strict regimes of very little other than the bed away from home, be it at an end of life centre or rehab centre,but it ain't no adventure sports respite centre.
Here in Ireland these places are run by nurses, health and safety is Paramount, hardly the patient counts at all, its boot camp style and orderly.   This place was run by skilled healthy young people all ready and at the ready to please, chat, take photos, get wet (!) and do a lot of hard work.

zip wiring on a warm end of summer day was done by all, my twin and self included.
the mentally ill zipped, the damaged from surgery zipped, those who had cerebral palsy zipped and so too did many with terminal illness and paralysis.  The place was geared to make sure all had experience if they chose to, amazingly we all chose to.

When coming back to Newcastle and you tell the neurologist, she would mutter 'mother of god, not on your life!'
But life is so SHORT.

ZIPPING DOWN A WIRE IN PINK FLUFFY SLIPPERS DID NO DAMAGE TO ME AT ALL....

A VERY SHORT WALK IN THE GARDEN IN SHOES PROVIDED FOR FOOT DEFORMITY RIPPED MY TOENAIL OFF!

Well i enjoyed zipping so that is a big + and my next trick is abseiling down Dalkey Quarry cliff face, if we can work a way of getting to the top first!

EVEN THE TWIN, ZIPPED ON THAT WONDERFUL DAY.

Health again (but then i am consumed by health issues), i have managed to get a large organization of the IMP International Mitochondrial Patient group to come to Ireland at the end of 2016 to give a conference.  This now has to start in earnest, that is the preps for it have to start in earnest.
it is a coup for me and a really good thing for those who have mito disease in Ireland, for the families, the children and of course the many adults who are missed out now in the age of YOUTH.

But the distinction on youth v. aged is for another blog.

i also won a scholarship to Netherlands for a mito conference, that too is a coup, it will be for me a regular junket out of misery and a learning and networking experience.  I won through writing an inspirational piece, now that is so cool!
i intend to learn ALOT from it to bring back to Ireland, both on how to organise a conference and how to be a diplomat!

so it will be very skills based.

I do not think there were many pluses.
I had a holiday
I lived in despair
but also learnt a lot and will have a junket and learn more.
AND, my arch by the shed was resurrected by Darragh Stokes and John Bloomer  just before Christmas when storm Clodagh (it would be a girl) blew it down and nearly killed it altogether, well the wrens nest is gone, but the arch is up again and maybe the wren can do a bit of lateral thinking when it discovers its place of preference has been napped by the winds.

i will see a second European country for only the second time in my life.
all because of health issues, as was the first time out to Finland.
i hope to make some lasting friendships, as i had in Finland.

IN IRELAND THEY SAY 'HANDS-ON' PHYSIO IS NOT SUITABLE FOR MY BODY...IN FINLAND, THIS FINAL YEAR PHYSIO STUDENT HAD TO TAKE ME FROM THE CONFERENCE TO WORK FOR ABOUT AN HOUR ON MY BACK WHICH HAD GONE INTO SPASM - IT WAS TERRIFIC, AND I ENDED PAIN-FREE.

so i guess i have to show the start of the new year as the happy clappie plus addict that all want me to be.
well, how long will it last?
That depends on all manner of things, primarily on the provision of proper health care in Ireland.
 That is a huge battle for all of us sick here.

SPOT THE DIFFERENCE - HEALTH CARE IN FINLAND OFFERS A PROPER SOPHISTICATED WHEELCHAIR FOR THE SAME DISEASE, IRELAND MAKES YOU 'WALK THAT HORRIBLE WALK OF EXHAUSTION, PUSHING A CHAIR YOU CANNOT MANUALLY USE IF SEATED IN IT!

WHEN I SAY 2015 PRODUCED NO HEALTH CARE HERE, I MEAN, NONE, THIS FOOT HAS BEEN UNSUPPORTED, UNTREATED FOR ALMOST A DECADE IN IRELAND IT BELONGS TO MY TWIN SISTER.  IRISH HEALTH CARE WHERE ARE YOU?

I WANT YOU TO LOOK AT THIS VERY CAREFULLY - THIS IS MY TWIN SISTER SPEAKING IN BRUSSELS - SHE IS AT THE TOP OF HER CAREER HERE.  TELL ME, WHY SHOULD IRELAND, ITS HEALTH CARE NOW TREAT HER SO BADLY SHE IS WALKING ON THE SIDE OF HER FOOT AND HAS NO SUITABLE WHEELCHAIR?

i am damned if i do and damned if i don't....talk about it, for sure as eggs is eggs, we are going no where fast in improvement.  The care system is dangerous and becoming lethal and terminal rather than a functional healthy care system that cares.
To be honest, i believe it's classed as the worst in Europe, therefore i don't think it can go down the tubes any further.

DOUBLING UP - FOR FAN BENEFITS!

I just wish the sick can get cared elsewhere, anywhere but here because you worry as i do.
We have the Cross border Care initiative, i hope those who read my blogs and are concerned, will view this directive, its useful but they are failing us by not telling us about it all.  i have discovered it.

well now i am at the end of this blog so i better clap for the happy moments.
clap for those shites who do not want to talk on health care and advocacy for better health care
and clap for those bought over the fence who are in health care and wouldn't dare speak out because they are paid by the system.
And also clap for the one who doggedly try for their own kindred who are disabled and take on that responsibility of actually caring, now this is worth the clap for the end of this blog.
i know two women by name who are dealing with the trauma of health care issues so that makes four i know by name which includes that of my twin sister and myself.
I know groups sent up for those also fighting a battle they feel they are losing fast.
I know too many groups of people fighting a battle they feel they are losing.
I have heard gut wrenching agony stories i know to be true, they couldn't possibly be lies, they visually are so 'in your face' you gasp wondering if its possible, but in Ireland it IS possible.

I want to clap for those who will fight hard and faster, namely the universities, Flac, NUI Galway Centre for Law and Disability, Limerick OT Rosie Gowran and her fight for the acquirement of wheelchairs suitable for the disability that people actually have as well,  and others, all capable of fighting but you hear little from them, who may put people first before profit and do some good.

We need more doctors who will put themselves on the line, as did Prof. Crown in 2013 and also Prof. Orla Hardiman about the only present doctor in Ireland who will give out hell about the services.
The rest are sitting back saying nothing.

Is this weak or is this powerful?
Is it that they have too because of been bought off and bought out?
The same ones who will not offer care in the public service as they too have been told to cut back due to expensive public systems, but they get paid enormous wages in the private sector so Ireland is a two tier system.
The doctors do this now as a business,  they work to earn as much as they can any way they can and if that's for the private posh then they will push for that.
If it is for the poor they not only give hell to us they treat us badly, i do know on this one.
They also refuse care, i believe more often than not they do this.  I feel i know this one too.

so clap clap clap for the plus in life.
and my mathematics is not answering the call that one is better than the minus in life.

i just hope 2016 will be better and less hard.

SO YES WE SAY -
HAPPY NEW YEAR TO A HAPPY
2016 - FOR ALL - EQUALLY - EVEN DOGS!

AH SPEAKING OF DOGS......C'MON NOW GAL..............

In this blighted house: 'Your allocated 'role' as a Disabled/ill person in...

In this blighted house: 'Your allocated 'role' as a Disabled/ill person in...: I have a progressive, rare neuro-muscular disease . I can walk with great difficulty but largely need a wheelchair. I find breathing, walk...

a blog written by my twin sister, and so good i am sharing here.

the night terror continues but what will new year bring

in reality for most, days run after each other and all the thoughts and the pain continue, i do not think anyone is able to switch that lightbulb in the head.
the lightbulb goes out permanently when there is death or an end to a crisis, a situation or a trauma.

for me the lightbulb remains, but mostly comes to hit at night and in the silent hours of the day.
its there for a few reasons but mainly for one alone, which hits the neurons like none other.

the HSE.
it has caused me such agonising grief and pain like none other.
with a kindly, very kindly conversation with a member of the HSE who rang to wish me well over christmas, he stated that others see the situation differently to myself.
Of course they do!
they ARE the HSE and they are that for nothing.

they know why they see the situation differently, becuase the warped thinking within such a mafiosi organisation says that there is one thing only for them, as opposed to the sick, is, their organisation's integrity must be held intact against even the fleas that hop.

but the strange thing about all this is
1.  the healthcare services was formed to help the sick and vulnerable.
2.  every person in Ireland can see through the 'group think' of the HSE, and really understands what the HSe really is all about, and this i am sure the HSE know, unless of course they are really not listening at all to anyone.  Everyone is aware what the HSE is about - protecting themselves like no other organisation in the state.

We also know health care is not about health but budget.

the reason its about budget is because the HSE and those who were bought in about two years to put management onto a more professional standing still cannot get the HSE to budget well.  At all.

for instance.
problem solving.

problems are solved when they are faced square on.
it saves time to do this.
it saves everyone grief from all angles.
it saves time during the processes of letter writing, phone calls, emails, stamps, office time and group discussions.
it doesnt make economic sense to be answering letters and emails for over five years and do nothing at all.
it absolutely doesnt make sense to be answering the government of the day or representatives, almost on a daily basis about the pain of another and making excuses for why it is occurring.
to bash and bully sick people, is perverse.

it literally is very perverse.
the reason why the HSE was formed was to help the sick and the vulnerable.

why do i not sleep anymore - i feel tortured.
why - HSE are doing this to me.
why is there no let up, simply because the HSE have not done a damn thing to sort a mess of their creation.
alas, they have a situation where they join up arm in arm like the rugby line up during the National anthem, the gig a bit, they shuffle but all along the way they link like a chain in the dynamic all known to well in group participatory sports of a high calibre.
they have 'group think' down to a fine art, and the responses.

when this kindly gentleman rings me and says he is sorry he has been unable to move things on a bit faster for us, i thank him but know to batter against the same individuals, is like flogging a dead horse.

and we have more waste of money.

but what will the new year bring for me.
i am unsure.
when the district nurse txts me and says 'i hope 2016 will be a happier one.'
she knows how terrible i feel.

she also knows where i stand in the pecking order of family and the level of isolation i feel within this area and within the family and county.

i feel very much like as if i am on robin island.
i am very alone.

christmas has been and it is obvious where i stand.
again as twins receiving one slim book from one relative to share with twin sister by way of my christmas present which is also a book that is self published is mean and unfair as we are two different adults.
we cannot get them to think that twinship is not a blood, body bind, it is individuals who were born like this by mistake and chose their own path and ways and are in fact very different.
needing yes, the same love because we are also compared as in 'virtue compared'  which is sick and perverse too.
but then to have people not care enough to buy a present for us as individuals, and to clump two relatives together to get one item for a twin is unfair.

it shows, where love stands i am afraid.
Love is shown by deciding to show it.
to decide to save money by lumping together two individuals into one for expediency is wrong and we see this as lack of love for the individual.
and mean.
they have at least as much to give as two pensioners with high overhead expenses on a very fixed budget and which will never rise at all.

so will 2016  see a change.
someone on facebook put up a saying, you cannot change another but you can change yourself.

i intend to.
for too long i have been bashed and my confidence shattered, intensionally by state and family.
the only way up out of this is by me, bringing myself in to a place i know i have been before.
i have been happy, cofident and proud of what i have done in adversity.

to revel in this pride can only be achieved by piling on achievement after achievement.
this i intend to do.

of the HSE well i will never give up my stance, that there, i hold myself not to blame in any shape or form to what has happened here.
too many confirm for me that this is the case, and i have known from others too who struggle in the same fashion as i do and who are being punished in very much the same way.

regarding family, well they were always like this and that will never change.
Love is for someone else to offer another.
if it has never been there it can not be given so what do you do.
you do alot of loving, if that isnt good enough the love not returned, then i am afraid the colours going out are rainbow and the colours coming back in return are shades of grey.

but then that is showing their true colours.

my wish for myself is to bump up the confidence i have lost over the years.
put my life back on track but never let it be forgotten what has happened me ever and this i plan to continue to do, i will never let it be forgotten on the platform of policy the HSE is a dying breed and they like love can change this, but i will see what the new year brings, they have this choice.

even if they loathe me, to deny care is evil.  positively evil.

the abuse-neglect behind the stats for those living with a disability in Ireland todayfo

TO MY INTERNATIONAL FOLLOWERS OF THIS BLOG, SHARE IT, SHAME IRELAND FOR THEIR HUMAN RIGHTS VIOLATIONS AND RESPONSIBILIES, UNTIL THE RATIFCATION ON THE HUMAN RIGHTS OF THOSE OF PEOPLE WITH DISABILITIES IS MADE THEN WE CANNOT HOPE FOR CHANGE IN IRELAND
WITH YOUR HELP WE CAN LET EUROPE KNOW OUR STORY

The article in today’s Irish Times by Dr. Clonan sent people into their own personal painful stories of experiences.

I honestly didnt think it was as bad as it is, and yet it appears that it is so.

Many now indicate that the situation is dire, appealing to members of the Dail from all corners of Ireland for their childrens’ needs fall on deaf ears.

It does seem it is but the tip of the iceberg, raging waters of poverty of equipment and services and appliances for all four counties screams from the pages of disability groups and especially the mothers and fathers who are asked to cope against all the odds.

In disbelief of one persons story i asked another who had multiple disabled children, ‘can it really be this bad?’

Confirmation came through her own story.

So the economy is on the rise, the country is seemingly getting back on its feet, people are baying for the extra pennies that were lopped off wages within both public sector and private sector and yet not one disablity group seems to have crawled from the mire of austerity in any shape or form and it doesnt look, indeed as if disabled children ad adults,  life style chances of enhancement is coming soon, if ever.

In one family alone an older child’s powered wheelchair has cost a single mother over 3,000k and the second child coming after is squeezed into an already far too small chair as it is.

Both children have life limiting conditions.

The house is set out like a mini hospital and there is constant lock-down in health crisis, one after the other.

Splints, shoes, tubing, dressings, medicines etc all have to be juggled  alongside the the far larger bills for the wheelchairs and orthotics and shoes and apparatus baying for the limited funds within that household.

Hospital runs, appointments and emergencies are all occurring, sleepless nights, baby sitters to cover staying with one while the mother is in the hospital with the other.

In another case four children are disabled.

Again the same seems to be the case, a 4,500k wheelchair for a child is needed.  Mothers are going to companies who make up from bits and pieces of chairs a half decent one for the child or go to a second hand internet forum to find something similar and do payments in small chunks.

The days seem endless, mothers online for this and that.  The exhaustion much be profound.

The HSE promising to pay back when parents get a chair but this never happens of course.

The despair is reeking through these stories, but who really cares?

Fund raisers and fund raising are the order of the day but many families find ‘what another fund raiser, what for NOW?’ people are asking.

Its endless.

The fund raisers are driving the cash strapped public weary and bleary and the good samaritan is exhausted with the clang from the clash of coins in the next begging needy disabled family or group or for the family group.

Where can all this end?

Adults too find it very tough indeed.

Over 60% of those getting wheelchairs from the HSE services are dissatisfied with the ones they have received, and are seen and felt not fit for the disability they personally have.  (Dr. Gowran)

The idea that the wheelchair is more a luxury than a prosthesis is par for the course.

Even to the eyes of those working within the HSE, if a person stands up, all eyes are agog ‘i thought he/she was disabled’  but most know that there are so many variables that most using wheelchairs are actually able to use their legs, but with such limitations to make it impossible or too painful or tiring.

Not only do we have those with disabilities living below the poverty line we have parents trying to fund the care and needs of growing children and dependent adults also living in poverty as well.

When the Hse runs a second hand ‘outfit’ for second hand wheelchairs, its a disaster.

Wheels fly off and a sick person goes into a wall.  (this commentator’s).

Wheelchairs slither into the muck on the side of a slight gradient, and the user told ‘ah sure they were never made for wet paving. (this commentator’s), yet this time the commentator was told it was because the bar at the back had not locked into place, but as it happened again, i looked at it and sure enough it was in correct position.  Systems failure in other words, or dodgy indoor powered wheelchair never meant for paths going south as in gradient.

Fact being, wheelchairs now-a-days are slithering and slithering off course into a divet to the side could have been fatal.

I heard of one case of a person going into a river in a wheelchair.

So how on earth can we be very chuffed to be pulling away from austerity and getting back into the black.

Who is?

Where is it reflected that Ireland is in recovery?

Is it?

I do not see it.

The mothers and fathers of disabled children do not see it.

And adults with disabilities are still not getting well paid jobs, if jobs at all and the poverty of disease, weighs heavily on top of the poverty of services.

We are in crisis – the disability movements are in crisis and so too are those with disabilities.  We need to see major changes and shifts of emphasis.

Most people caring for sick and disabled children, if given a break and some leaway can offer more in spades.

Most adults with a disability as well, given the chances, the transport etc offer just as good a career path as abled bodied persons, but employers it seems, think maybe they are more of a liability.

Tosh i say.

The only liability is lack of change, empowerment, rights and equality.

I am enraged to hear the stories that i have placed here in this article from only three families i already know about.

The tip of the iceberg

 

thank you! hit the 20,000+ mark and another link to another blog

hello everyone.
just to send out a heartfelt 'thank you' for reading my blogs, in the short space of time i have been doing this, i have reached over 20,000 and i am so happy about that.

now here is another fantastic read and its that of my identical twin sister.
you will see a theme running through both, and i think together the team is strong.

we will never give up and will fight the injustice throughout society for those of us now labelled and having to live with disability.

here is her link well i hope it is, tell me you get it ok.
bye for the moment, the dogs are needing their dinner!
http://blightedhouse.blogspot.ie/2015/12/international-day-of-disabled-people.html?spref=fb

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.