Wednesday, November 23, 2016

In this blighted house: Changing the language of distress in healthcare.

a very powerful piece by my identical twin sister, its the stuff of truth and a lady after my own heart, i say, if you name it, you have a chance to change it. but if you dont you will suffer.

In this blighted house: Changing the language of distress in healthcare.: I was TRAINED    I was TRAINED  to understand, recognise, support people who displayed a range of emotions.  I was TRAINED to care about tho...

Sunday, November 13, 2016

social housing in Ireland when you are sick and disabled

it is important to say it as it is.  Right?
Yes.  Right.

we have not done well in building social housing stock for those with disabilities, in Ireland.
in fact we have done very badly and build or have so few available for disabled people its staggaring.

So what happens when you become unwell, sick, disabled and mobility compromised here?
what happens if you are in an upstairs social housing unit but cannot cope.

here is what happens.
its not pretty at all.

firstly the right of a person to feel a sense of community, safety and secure is a human right and also named as such in the UN charter.
but then ireland doesnt get that right either and ten years on we still havent signed the convention on human rights for those with disabilities, here.

Neither is it in our constitution that we are entitled to free healthcare.
so i say i am pretty fucked so i am.

but lets get back to HOusing.

i was persuaded to move yep, by the same old organisation that i argue about and with all the time - yep, you are right, its the grand old HSE.
so, they persuaded me, but i hung on with 'i am going out of here in a box.'  but i hung on until they persuaded me and then i capitulated.

what happens next is they help you.
they speak to the council and they argue for you.
but this is a housing situation for a person with a disability.
a person who has severe/profound deafness and who was once abused.
so this is a lady getting older now with a progressive neurodegenerative disease, who had 'history.'
three or four if not more consultants stated where i should live, what circumstances i would cope in and what would make my life better.

the whole reason for asking for rehousing was being persuaded to - to make my life better.

well between the jigs and the reels, the council would not capitulate to keep me on the street i adored even though a downstairs unit had become free.  
the HSE were not even in sniffing distance by that time, where they were is anyones guess.
they refused to really engage at all by the time very strange places were being offered.
i learned a few years later that my OT went on extended leave.  so when she went so did the whole HSE apparently off the case.

i was placed in a shocking environment.
and the images prove this, which i am about to show you.
No one should have to go through this hell on earth.
disabled or not i was ripped from all i had known and dumped.  that is the only word for it.
and from that date my whole life has been turned upside down.

Yes, i believe i have right to blame a healthcare organisation who persuaded me to move, got me to give in but then abandoned me. 
i have a right to be upset when the HSE saw the dangers i was in and admitted it but did nothing.
in fact so did nothing that they closed my case when all were involved in my case, that is the guards too also said it was dangerous.
the GP said she would not walk up the avenue on her own on a daily basis and didnt know how i did it.
well i had to.  i was left.

if anyone thinks that Ireland gets some things right, eg Gay Marriage they manage to get most everything else WRONG.
we have proof of this, all over the place.

the biggest one of late is stating to nurses a directive to heave a person off a bed in a hospital to get rid of these 'trespassers'  the public patients have no right to free healthcare so they say.
so in effect the directive was to pull a patient from a bed that was needed.  good innit.
but shame and shock horror they have withdrawn the memo once it has been seen and the emperor is wearing no clothes like.

but then they dont get the housing right either with 2,500 children homeless this christmas.
there is no need for this.
there are plenty of empty properties, and also vulture funds taking up the rest and rent going through the roof unmonitered, and no need for no cap on rentals.  we have a housing crisis for ffs.
we have a major housing crisis.

there is no need for this in a small country.

but back and away from that rant to this one.
where i was PUT, dumped and spat upon.
here it is.
and from there i fled.
after i fled i met the famous or infamous HSE again and my life isnt my own any more and i barely have my sanity now.
after i fled i started blogging.
i am not standing by no more and not saying it as it is.

you see harm being done and its been done to yourself and your twin sister you will not stand by.
this person doesnt.  i will never just stand meekly and accept it.
i will fight it for myself, my twin and for any other whose rights are being denied and who is suffering.

here is where i was put, nice innit.  thats holy ireland for you - the land of saints and scholars no less.

i was an artist once - before this move - and still not an artist since.

this is the toilet - for a wheelchair user!  the grime was horrendous. the mess and muck was unbelievable, it was filthy.  if you are all alone in the world who was going to sort this?

one christmas my twin and i were alone, so we put a strip of chipboard on two small tables and ate together.  it was of course depressing to say the least.

even the poor dog was depressed - nb the filthy yard, the carpet pins still sticking up when they removed the old carpet (but not the vile linoleum which was sticking and dank), note the rotting door, part of which fell off in a cc officer's hand.

when this was all cleaned up there were eight floor boards left between the fire grate and a sofa, a small sofa as i had to get rid of the one i had it wouldnt fit in.

despair quickly set in.  i was now sandwiched between two roaring alcoholics and all the cul de sac drank, i was lost as a single woman among all these men and their booze, i was terrified.

no place to store the mobility scooter.  at the last place i had it in the van, at the front door, so safe, warm, free from wet but now look where it is.

there is no conceivable hope in hell that the illusion of this abode was actually making my life better, look at that walk to the rest of the estate?  and when we were banked in with snow i was left here bang between men alone.  yes, i was scared.


most people when they move to a new place are able to have their belongings inside the actual home but most of my stuff couldnt fit, i had been downsized so badly and had extra medical equiptment now nothing really worked here.

my new home was like this for months, as so little had been done to the fabric of the unit i had to start all over again, but there was no storage for my stuff, not a cupboard in sight.

i think you can understand how this woman went downhill fast here, how she took overdoses and ended on a liquid feed as her crohns disease worsened under all this stress and the stress of bullying and harrassment from the natives.

what got it for me was seeing grass, but grass doesnt make a home and the guy who owned that white van beyond the gate jumped the wall one day to attack me.  because the council were going to get him to give up his parking bay for my adapted van.  no way, he would rather burn down all three units he said.  no way, said the council we will leave him alone, we dont want him doing anything to ann


pixels have been altered in this but the dirt is obvious, pixel or no pixel

a council officer was arguing that he didnt think this door needed replacing (it was warped, rotten, growing mould and more besides) when this strip at the ridge came away in his hand!

sitting room for a sick lady who has an energy disease and mobility compromised and no family.  who was to sort this ffs.

insane!

if you can do comparisons in size judge the smallest dog we have, a chihuahua, she takes up alot of this space and my mess is all around as no shelves, cupboards, wardrobes nada!

i
the old rotting kitchen units had to be dumped they were so bad

and a whole new kitchen had to be put in - my twin bought me this.

having a van outside your hall door was now a distant memory and this was to improve my quality of life?

talking about rain, it seemed to rain forever, and on all my belongings, most of which had to be ditched or sold anyway

this is my twin.  we sold our jointly owned home, which she was living in when she came home with a disability, here she is helping me move OUT.  AFTER i  had been shot at.
so it was that insanity and my sanity was at stake, i left but as usual no one helped me one jot, except my beautiful twin who was equally truamatised.  
there is only one organisation to blame for this bloody mess and that is THE famous HSE!
i was happy where i was.  i had no intention of leaving or asking to leave until they persuaded me to do so.
they also vanished soon after leaving me alone and abandoned me to all of this.

anyone think this is right in a supposedly 'modern society?'

Saturday, November 12, 2016

ejecting patients from beds in irish hospitals by HSE and legal teams

I have no idea how big this problem is.  How many men and women, elderly and not so who are refusing to leave a hospital bed, even when supports have been put in place.

I do know why this can happen.  I have to confess i have done this.  I have refused to vacate a bed in a hospital because I was literally afraid to go home to the social housing unit where I was badly threatened and repeatedly badly threatened.

When the HSE claim that they would put in supports and have put supports in place and still patients refuse to leave beds after they have been medically discharged my case was not sorted by the HSE - AT ALL - there were no such supports.

It was the most distressing inpatient stay.
I was threatened and was told that every day I was there I would be charged the going rate for the bed and I was broke.  their bullying made me leave - no there was no support put in place.

Social workers met and tried to discuss this with me but i was made to feel awful. Horrible. I was doing something that was totally against the grain for me who would never every have contemplated anything like this if the situation was not so dire.

I refused to leave because it would mean returning to a social housing unit from hell.
The hurley ball which was flung at me - i still have it
given by a dear friend who wanted me to try and 'Live' i had placed this on my ledge by the hall door, the passing drunk swiped it off and it shattered

Mr Tony O'Brien CEO HSE - Look at my shattered broken twin sister - tell her where the support was - because we still do not know and still get no support.


the belief that 'support' would be put in place is erroneous - there was my very sick twin, and myself a very sick threatened person moving out - with no help from anyone, state, family or other, just us and that Mr. Tony O'Brien is OUR reality when i had refused to leave a hospital bed because of this!

No matter how old the child is - a Gun is a Gun and its facing at my face - five pellets found near the swingseat i lay on and more by the back door - you just don't stay when so much went before this too.
i had been threatened there, and had a gun pulled on me and shot at.
I had eggs thrown at me, juice bottles, hurley balls and I had drunk me ring my door bell and spit at me and accuse me of doing things I could never have done.

I had to listen to wailing drunks day and night.
I had to go through a small bottle neck of drinkers to reach my home and I felt very intimidated.

The GP Doctor said at a team meeting that she would not walk up the avenue on her own and didn't know how I did it on a daily basis.

The HSE say they put supports in place when it comes to evicting patients?
They never put supports in place for me - ever.

They refused to even speak to me about the social housing unit.
Refused to find me safe haven until we sorted something safer.

I mean safer as all had said it was unsafe.   Even the HSE had said it was not a suitable environment for me - but still they never acted to make sure i was safe, ever.

The Manager of the area refused to talk to me about the hell i was in and ordered the social worker to close the case as this was a 'housing issue and not a health issue.'

I beg to differ as the HSE had persuaded me to leave the last social housing unit because of the stairwell.
they succeeded but never oversaw where I was actually placed.  I was moved due to disability - they made my life far worse not better, making it better was the whole reason for the move, not to be threatened and placed in danger, Mr. O'Brien

When they did see it, they failed me.  Failed to act and failed to be strong enough to be able to get me to safety.

The HSE closed the file when I had taken two overdoses as suicide attempts and was on a liquid feed for a crohns flare.

A team meeting had stated that my health had deteriorated since I was moved to this place and an OT advised in the future of my rehousing there should be far better inter-agency interaction and involvement to make sure the place was right for me.

But, at the end of the day they never acted and I was told I would be dead before a safe home was found for me.

I fled the county, as you would on hearing such words and couldnt afford to stay in a county i had actually never left in my entire life, so much for what was written on files by medical consultants!

The case file was closed against the wishes of the district nurse who wrote on file that i was in a very fragile state, registered disabled and very unwell, she wanted it all opened again.

It was closed.
I was left.
Tony O'Brien was also the CEO then.
The HSE abandoned me lock stock and barrel.
I refused to leave a hospital because I was witless terrified to move out and back to where i was horrendously bullied, taunted and threatened.

My O'Brien needs to explain to me, how on earth he feels he can confirm that supports are in place when people are ejected from their beds.  Support wasn't there for me.
Nada.
Mr O'Brien, the HSE has never owned their responsibility to a woman who is severely disabled where consultants - three in fact had named the type of accommodation that would be most suitable for the disabilities i had and how I did not deal well with change and needed to be in a familiar environment.

These consultants ranged across the board of many disciplines.
so this was a cross discipline consenses of what would best suit me.

The HSE ignored this.
Ignored the fact i was in danger
Ignored a woman who had attempted suicide.
Ignored a woman who was too afraid to leave a hospital.
Ignored a woman being threatened that she would be legally responsible to pay for every day in that hospital.

They failed me.
Just as they presently are failing me.
the HSE say more then their prayers.

The ownership, the ability to own what goes wrong is amazingly absent.

I would like Mr. Tony O'Brien to answer me one question:

when this woman refused to leave a hospital bed what supports were put in place for me going back to hell on earth and more of the same.
so much more of the same that all said it was dangerous and even the guards said i was in a dangerous housing environment for myself.

Mr O'Brien, where was the support you claim you put in for such situations?
i can tell you, no one bails out in a hospital bed for nothing.
there has to be a bloody good reason why ordinary people are too afraid to go back into society and that something is terribly amiss if they fail and refuse to.

there is something dreadful about all this i have to say.
You really expect me to believe you when you say People stay even after all supports are given to them when they are about to leave?
i am to believe you?

I don't.  I am sorry i never will!


Thursday, November 10, 2016

no legal rights to healthcare in Ireland for public patients



so this lady is not entitled to healthcare and has to do with her nurse attendent - maggie mai!
the alien in the middle probably is entitled to healthcare in ireland, those on either side are not and in London UK, because we were not.
taken many years ago when i got sick first.
Controversy again with an outrageous memo sent to all hospitals citing the legal right of nurses to eject public patients from their beds as - the Irish Constitution doesnt give us the right to free healthcare.

This means also that they cannot eject private patients, as they bring in the money to the hospitals.

so the public patients are in effect illegally being treated and also illegally occupying a hospital bed.

Well, according to the Legal departments of the HSE this is what it is stating.

The constitution doesnt give us the right to free healthcare but at the foundation of the state we didn't have Insurance cover for healthcare and most would have got it free surely?

The poor didnt fare well, we know that with mortality rates being extraordinary high for all diseases, childbirth and crowded hovels of homes.

We sorted this through altruistic doctors of the day, stream lining care and putting care for the poor into place and making a massive difference.

This is proven as fact.
So if the constitution omits any reference to healthcare either public or private is this a legal citation by 'omission' or does it say in the constitution, FACTUALLY, that there is no free healthcare in the state of Ireland and FACTUALLY you are not entitled to it.

is there that very clause or is it simply not there so its implied?
because free healthcare hasnt even been mentioned?

Well now i know and understand the dreadful treatment in a public hospital over the past few years.
I have been having troubling occurrances in the 'head department.'  This caused me to end in A'E and each time sent home with no tests whatsoever.

on one occassion the young doctor told me that 'this is an Emergency department you know.'
well i did know
i was there as an emergency.

but the fact that there was a lady on the trolley being royally treated was a reminder of how gutter unworthy of any healthcare i was anyway.

nurses fussed and a very nice consultant was pandering to her need and being all very kind indeed (i didnt see a consultant at all).
I heard the consultant inform her not to worry that he would keep her in and do an MRI in the morning.
the woman in a dark suit took a note and organised a bed for her and the tests.

i was being coerced out of the door, in no uncertain terms.
i couldnt argue, couldnt plead, could do nothing.
i had to go and that was that.
i went.

Mentioning this to a kindly doctor as an outpatient who didnt deal with the 'head department' at all, but decided to set up some tests, CT scan first and this showed that i had had a stroke.

the fact that no one told me i had had a stroke is worrying, for three times since i have been A'e and booted out each time with no tests.

the fact i couldnt even say this to the ambulance men because no doctor ever told me i had had one also is worrying.

i have since had an MRI and waiting for the results.
that was organised when they saw the stroke on the CT scan.

when you go into an emergency department with consistent symptoms and know you have had a stroke and its on file the duty towards me - ha, again according to Liberty Hall and its quotes from the same constitution that says we are not entitled to free healthcare - cherish all children equally - i guess that also applies to all citizens equally, well we are equal are we not?
thats a whole different ball game and no we are not.
but the state recognises that all are to be treated equally, no?

i am so shit gutter worthless i have a very young reg get me out of that trolley by saying he knew what was wrong and injected me with a steroid injection up the back of the head and said 'there now, that should last for six months.'
it didnt, it didnt do anything in fact, it was a big fat placebo.
and for my sins i get a big fat haematoma swelling in the back of my head the next day.
asking the doctor, the consultant did he not realise once i was injecting heparin and once too i bled like a pig during a muscle biopsy how then could a reg who had no patients as he was that new could do this?
he hastily added that that was not his responsibility.
i hasten to think after the fact that no registrar usually makes these decisions new to a hospital without first consulting a neurological consultant as i have a neurological condition?  NO?

so a newbie can and does do things to people without just checking if its alright to do it so?

i seriously am becoming incredibly worried.
the head stuff is still not sorted.
a referral to a ENT speciality consultant has gone missing and never received, and again i have been waiting for an appointment with him for two years, whereas if i was a private patient i could get it next week, or two years ago in fact for the same symptoms i presently am experiencing and which isnt being dealt with.
cos i am a fecker who is so shit i am unworthy of health care and actually not entitled to it.
so are you saying then that you are killing me off so?
i think this in effect is what is happening.

my neurologist refuses to refer me back to a centre of excellence in the UK because he doesnt see any point.
but i do!
its my body and i have that right under the Rare Diseases Plan and also under the E112 Agreement.
but this doctor just more or less states 'will you just go home and die off eh?'

No, i wont.
and i remind the HSE that they were given the remit of the Healthcare needs of ALL the citizens of this state, and primarily those in the public healthcare system!

those going private wouldnt sniff a hse official, whereas we have to endure loathsome stuff from all quarters of this heavily inflated over rated and dysfunctional organization.

we have no choice and been told so.
we do not get any choice whatsover.

so the denial of healthcare also means that you are wasting away and you are not entitled to and do not get it either - physiotherapy, proper bed set up, assistive aids, psychological services nor even doctors.

as i am being flushed from the hospital data statistical base as they shift numbers to improve the rating by claiming discharge as well but rather should be stating 'discharge due to flushout to make this look good, and yes she is sick but doesnt matter and no i dont care, feck off and go die.'

so those who believe we, the public sector as patients have it all rosy and you in the private poor sods have to pay for this, you can bet your bottom dollar you havent a clue how hard it is to be cared for by the state.
its almost impossible.
but you continue a farce by saying we are being cared for by the state.
we are not, proven and i have experienced ths.
we are most definitely not being cared for by the state.

still no responses as to who sanctioned 22k for the Health of social care HSE last year for subsistence and travel an increase of 131% in one year.

i still feel 22k would go a long way in nurses pay and far more besides, it may even be spend on a fecker like me.

holy god forbid i say.










Tuesday, November 1, 2016

HSE and the agreement for travel help

how on earth can the HSE keep this up?
my head simply cannot get around this one.
my head feels as if its on the end of a corkscrew, the old fashioned type - the one where the head is turned and turned until the bloody cork is popped or in my case, my head is popped right off of the body.

it had been welcomed that the HSE (health service executive) agreed to help me get to the hospitals.

their agreement (this wasnt a joint agreement, nb no i never devised this agreement, it was the hse who agreed to this nb)
was - to help me get to hospital appointments because i am getting more unable for the long trips and then the long hours spend in the hospitals in the middle before the trip home again.
these journeys are becoming intolerable.

i think they realised to a degree that there was danger involved her and for health and safety they best help us.  we live a good deal away from the various hospitals we attend.

the catch in this came about ten days ago when i was to pick up a HSE provided wheelchair, i asked for help getting there as wasnt able to take van or wheelchair i presently have.
i was told it wasnt a acute hospital so they couldnt take me to get the HSE wheelchair.

so how was i going to do this?
in the end i asked an even older sister with a sick husband, 11yrs older in fact, which makes her 75yrs old, is this actually right that the HSE, healthcare provider makes me ask a sister who is carer for a sick husband do this?

well they were not backing down.
the appontment was cancelled due to the technician being sick.
so even though high anxiety and pain occurred in the arguing over this, the appointment never happened and the wheelchairs are coming to us this next time rather than we go to them.

i gave in my appointments today so that taxis could be organised.
again there was one appointment to a dental hospital that deals with my teeth or the falling out teeth due to primary sjogrens syndrome.

primary sjogrens also brings with it a 44% higher risk of non-hodgkins lymphoma, so that all has to be observed and checked as too any signs of any other mouth cancers, lumps bumps etc that could mean something more.
no ordinary dentist will actually have me as a patient.
but i was refused today help in getting to this place, which is in dublin city.
but i could if need be get to a hospital about ten miles further than there or ten miles nearer because they are acute hospitals.

now if you can make sense of this you are a better man or woman than myself.

to me its absolutely harrowing in extreme to be putting me a 63yr old woman through jigs and reels in such a fashion.

today i ring in to the area managers office and entirely lost the plot, i screamed and roared and had lost it, completely.
the strain of this engagement has now got to me.
i am hoping my supporters will actually support me through this cos i feel i am breaking under the strain.

this is a perverse organisation.
finding hearts, i ask the elves of christmas to find the hearts of the HSE quickly
we are supposed to be sorting a veritable mess through mediation but if they nit pick like this do you think that serious mediation can be achieved at a top level if this is how low they cast the net and how low they stoop to rachet up my pain and anxiety to such a level i thought i would have a stroke.

talk of strokes me folks i go to a hospital, this week, helped by taxi from the hse to see if i did have a stroke or haemorrage, as i had a ct scan and now called back for an MRI.

i have no idea what they have seen on the ct to call me in but all i know its for stroke haemorrage radiography exam.

this is what happens when the sick are cruicifed by the HSE.
name it!
i do not like the HSE and yearn for them out of my life.
like any whistleblower in ireland, i know the hse read this, and i know they are making my life hell and will be perverse enough to continue this farce but i hope they do not.

i hope they will actually feel something soon.
actually FEEL what they could be doing to me and my twin sister.

FEELING something is what normal people do for the sick and elderly, you have to feel first.
i am waiting for it.
either automatons or robots they have not shown feeling, i am waiting for their human side.
i still think it possible, but i am waiting for blood to run warm to the head and for the heart to rule that steel that they wrap themselves in, possibly against hurt from outside.
but god what a way to prevent hurt.
so they kinda like watching me post on a blog their minutae details of how they treat an older woman?
surely to god they could feel that all this is so unnecessary and i should gain a life before i am ten feet under.

if anyone with clout out there knows the hse intimately and sees this, will you asked them to go find their hearts. 
they have to be somewhere some place.
we could do a hide and seek on this, but easter is a long way off.
maybe elves and  little people can help them, they have a heap of them in lapland i believe and its not yet christmas and i am sure the exercise and good food would please our minister for health, coming up to the 'heavy' season for the elves, at christmas.
can we find some hse hearts.
eh?



Monday, October 31, 2016

the wheelchairs arrive this week!

soon i will be "on top of the world" again


So great news as our new wheelchairs arrive this week!  at LAST!
this was a grim period of my life - as i now begin to journal the journey
it is about five years now that we have struggled with such awful bangers from hell you wouldn't believe possible to be handed out under any policy of 'health and safety' guidelines.
ones which saw wheels flying off and heading for the city and the patient into a very hard wall.
pretty bizarre that an older person who drove this contraption, had to do so with the full control panel in her lap!
ones were full control panels fell to the ground as you were crossing a road.
ones which had no suspension coils for us with spinal arthritis and nerve entrapment.
ones which were too small for large ladies
and seats that were used by others, which should never be given because of the complexities of the other's conditions which could also mean incontinence and shaping a cushion to their own rear end postural need.

but we have to be grateful (all will say).
I SAY - depending....
if you understand the work it took to get them and the problems beset from day one.
I SAY - depending on why we have received them.
because quite frankly although they will be magnificent and perfect and body perfect for the sickness and conditions we have we know the fight also allowed our personal health deteriorate.

we know this because we are washed out, washed up and exhausted.

NO HEALTHCARE system should allow their staff to abuse the sick and elderly.

A major concern for me therefore has been 'cause and effect.'
the Need for these powered chairs was self evident as repair men were sent on fruitless journeys to our home armed with a spanner and duct tape, yes things were ducted up.

this story gathers as much momentum as a fast speeding wheelchair out of control with mega faults.
the reporter will though, leave out the faults and fase the fact.

  • they were and are dangerous.
  • they were always unsuitable.
  • they caused harm.


the service providers caused and inflicted dreadful harm.  especially on personal psychology of the older clients.

if you see magnificent wheelchairs now been given to the twins, remember with calm the chaos we have been under for a full five years, even longer with other issues we had also to endure.

the strain and the anxieties, the worsening of our health and the constant despair.
remember too, we are not over with the needs we have.   We have many mountains ahead.   a wheelchair is - a wheelchair replacing legs and allowing us to be comfortably able to traverse our universe as everyone else is.

remember, we are very sick and as one manager asked rather naievely 'when you get the wheelchairs, will that be 'it?'
Sadly, my response was 'Alas, No!'

i beg to remind the HSE that wheelchairs are actually a given in a person who is mobility compromised.
its not a luxury and not a sort of fancy tag on with "you should be grateful" tag on.
this item is about as paramont as getting prosteses for a leg long gone.
to sit listening to the now minister for health Simon Harris opening a group seminar on the state of the nation - in the Irish Disability world here, in pain is wrong, I am far left arching back because i had recently snapped both my shoulder muscles after a bad fall, i arch from pain and have a transfer board to lean on because my arms have to go somewhere - due to pain.

all wheelchairs must be fit for the purpose they are intended, to be used safely where the client wishes to use it.

many OT's in ireland today never ask the client how they wish to use their wheelchair, what they hope it will achieve and where will they take it and what will they do with it.

many OT's still do not know how to power up a wheelchair nor how to switch one on.
many do not understand what a wheelchair can and cannot do.

i have watched perplexed OTs fuss around a new or old gizmo looking to the technician for these simple answers.

the OT should be able to appraise.
if they cannot then they will be screwed by any hard-sell retailer or other.

you must be on the ball and the standards right now are rather suspect.
sticking plaster temporary solutions are just that - temporary and expensive - wages, petrol, food, and time (for the repair guys)

Recycling centres for wheelchairs seem to be economically bizarre in extreme, as the duct tape and pliers, screw drivers and screws attest to.
recycling centres to cobble together a moving item for a very sick or disabled person is bizarre
such a grim period of our life - so wilful, harmful and both descended to utter despair, and still do - for the fight isnt over yet.
yet believe it or not you cannot hand back crutches, walkers, and many other smaller items for recycling that would do less harm and certainly wouldn't see a patient wham into a very hard granite wall under power, - minus a wheel.

You look to your wheelchair as the light of your life, the very stuff of existing well alongside your fellow human being.
i do not see it as some kind of freaky add on, a tag on to the word 'ah you poor fecker in that wheelchair.'

i am not a poor fecker in a wheelchair, i love my wheelchair with a passion.
Because i hate the legs and body i presently have and this is a dream job to help me get out and about.

Don't pity me for being in it, and no folks, do not ask me to keep the speed limit and who will win the race as you see twins go together along the road, in our gizmos.
Do not ask me do the chihuahuas pull me along like huskies, thinking that is incredibly cute.

i am a human being doing what everyone else is doing, getting on with my life with appropiate legs.
Do not jump out of the way with 'oh i am sorry.' when they see me sail along - you have done nothing wrong, and you have a right to get your butter and milk and i can wait till you have.

do not give me that pathetic smile as you see me come towards you - i do not read that one well, if at all.
just walk on by as you would every other person, most don't get a cross between wry/why/poor and fecker smile.
do not admire my brimmed hat loudly so all can see that you are talking to a wheelchair user.
i don't shout to others 'LOVE THE HAT!'
and mortify another.

I am now going a-walking as all do.
i am now released from one hellish battle from the HSE.
this is my release.
it is not a bonus point situation.
i am not lucky, it just means the rest still fighting are incredibly unlucky, because its a hellish fight and boy its some fight.

But its also not the end of care, its only the begining of trying to regain a life brutalized by a brutal system of care in ireland and by the state.

Daily we have examples of economic murder in the system.
Daily we hear of gigantuan 'top ups' for those organizing the systems for the sick and elderly and recently one of a 'top up' jump from the previous year of 131% more than the year before, an outrageous sum to go unnoticed and unchecked.

we also have the situation with the use of taxis for the staff of HSE and why can they not be like all other workers of this world.
Buy your own car, maintain it or bus it or walk it or dart it.

why should the state subsidize your travel expenses by means of getting you around by taxis no less.
This is the most expensive form of transport.
If you have a job be grateful because certainly i personally could do with one.

Perks are when the birds outside get the wriggly mealworms and nuts from me, to help them survive.
Perks for a well waged person within our public system is a crime against the very people who are struggling daily and being anihilated daily for even asking!

I challenge all disabled people now - stand up and fight to get your needs met. Do not be afraid that this system will victimize you and give you nothing for asking and  for making clear your asking.
outside the 'House of Plenty'  demonstrating doesn't sit that easily but i believe its part of the democratic mandate to have your say when you know things are all 'arse.'
because asking is a right, the needs you ask for are not luxuries, you are always asking for needs that will level the playing pitch of enabled and dis-abled.

at the "house of plenty"  Dail Eireann, yet again to beg for the crumbs from the table - doesn't the lonesome wheelchair look a sad little contraption?

you have rights.
say it as it is.
and say it consistently in every forum you have at your disposal.
it hurts a lot to do, but i believe until the system understands the word 'equality' we have to do this.

Equality is a word not understood.

all in this state are equal, it says so on Liberty Hall right now - in case all do not know, we have passed the first 100 years of civilization in ireland, we have or should have gone from the potato diggers to the IT specialists 'mentality' but to me we still are at the stage of "if you love me enough, i will do this for you and you can do this in return."
the idea of 'stroking' another as in bribes, backhanders, a gift for a gift, (a leg of lamb for a dozen eggs) is long gone.  Not so in the Culture of Ireland alas, this is Irish Culture, they/we are not used to replacing this with - a wage for a job well done...and nothing more.

You do a job and you get paid.
You help another because its your job.
You do not slay a person who is sick and elderly who asks for her needs to be met.
You do not slay a person who points to the irregularities in the system, the waste, the dangers and the shortfalls.

you should in essence be learning as i have done - the hard way
what happened here?  the control arm was tied up with string - but it came apart whilst trying to put chair back in van, it jack-knifed off the ramp and nearly ran twin down as it lurched backwards at the same time.
Like so...
once something is pointed out, it should be addressed.
not have a legal team second to none to defend the ridiculous and also the downright dangerous.

As for waste?
Well, yes, we have economic murder across this system.
and thats the major fault in our healthcare system.
Patching up makes no economic sense, its a short expensive way and a simplistic way of dealing with some very drastic personal situations.
You sort it man.
Just sort it and move on.
That's economic sophistication at its best.

So while i wheel along now in my chariot i leave that chapter behind me but unfortunately there are more battles to be fought.
Oh for it all to end, i am that weary of the fight.

The cost to the state in their battle with us must by now be enormous.
The 'top-up' recently of a Director of services of 22k for food and travel would have gone a long way for the sick.
Who saw that being done and why was it allowed?
My questions remain many.

The biggest being -

Why do you consistently say the sick are expensive, rather than saying that paying those to care for the sick is overly burdensome especially the 'top-up's to be economically viable.
we are paying too many for doing too little which is - economic murder.










on a beautiful day many are out strolling, staying calm, chatting and replenishing the soul, the mind and the psyche after all no one is free of difficulties and problems.
it is no different for the sick and disabled. we too need that 'space/time out' to do as much replenishing as we can, we need to.
but unlike many when the weather is beautiful, all get out to enjoy, while HSE argued over handing back a scooter or a wheelchair, (both clapped out) they held my twin and i virtual 'hostage' at home, becuase we mobilise together in the same van.  if one persons mobility aid is out and broken, two women cannot get about together.

this is called entrapment, all must be enabled to mobilize and enjoy what ever citizen of this state enjoys.  no one should be held to randsom as we were and we hope peope realise, its against the law to prevent a person from getting out into the envirnoment.

simply put
ENTRAPMENT BY THE STATE
-
IS AGAINST THE LAW
AGAINST THE CONSTITUTION OF
IRELAND