Wheelchair Saga-Wheelchair Trauma of the Kennedy Twins, Ireland

when you want to change a system from one of abuse to one of 'human rights'  

So true!  Ann and Margaret (that's us) have a progressive neurodegenerative disease, with a complex process occuring which is multisystemic.
this is NOT just a toothache, its has proven to be a heartache, a trauma and a journey i wouldnt wish on anyone really.

The journey has been a tough one.

it should NOT have happened.
and it SHOULD NOT ever happen again, the abuse , the pain, the distress and the decline in health is testamont that to put any human being through such suffering destroys lives, in more ways than one.

but the journey was of 'wheelchair provision' for identical twins with few supports and very needy.
it began at the beginning of a sojourn in a new county, that of Wicklow, the present residence of the Minister for Health.

its been life changing, and all for the wrong reasons.  FAITH, in humanity has died a death and is buried deep in the rubble, and its rubble believe me its rubble.

No one should have to go through what we have just been through - i hope this is the war cry against such treatment.

Fall out in terms of relationship with the HSE also has taken its toll, and no need to have been so aggressive, and antagonistic.
it was a large organisation pitted against older twins.
but do you win this ever, or is there a very deep cost?
there is a cost of course, to our personal health, our care and the attitude which i guess now have stuck.
but its proven fact the fight has to be gone through, yet shouldnt have to be so tough.
All manner of things were debated and even part payment was suggested.  two years later - we are on the cusp of acquiring fabulous state of the art wheelchairs.
Wheelchairs folks are not Ferrari's.
they are 'legs' and that is what they do, they walk for us.
when we cannot.
they are a prosthesis, and we needed them along time ago /
between then and now the accidents have been at time verging on possible serious injury.

this should be attached to the wheelchair with bolts, not a cable - very dangerous!

we had tyres ripped, puntured, wheels falling off, control knobs doing the same and whole side panels falling to the road when crossing it.  we had arms swing lose away from the hand and guiding knobs come away in the hand.

crossing a busy road the full side panel with control knob fell off!  The previous image shows a 'before - duct tape'

we have also had, near misses of going into ravines on side of paths leading to a steep drop.
going into nettles and into mud.

Sometimes you just don't need the words to tell the story.

we also had injury for these contraptions of makie uppie wheelchairs cobbled together at a recycling centre of the HSe, a bit like the dumps of india collecting this and that from this and that and making er, a wheelchair.
someone who worked in the third world once said that he was shocked at what he had found in wheelchair provision in ireland - that has to be a mighty wake up call if you ask me.

trying to change a 'system' can be exhausting, damage your health and take years - i say its worth the attempt.

attached to every wheelchair is a human being - even if it takes getting to the Dail for what appears a fruitless exercise - do it.

so the trauma and mostly trauma can be documented in pictures and usually say more than words, as you absorb the reality of duct tape, and mess and damage and problems.
here are the issues, the damage, the problems and a final word the wheelchair.

people have to BEE-lieve that changes needing change can be brought about

Looking for environmental hazards should be a community enterprise - it was

Community ends with the cuppa chait is never impossible to try and make a community better - if it means the paving for a wheelchair user, or the buildings, accessibility - BEE the change....

the Bee-ginning of trying to make 'greystones' an accessible town for all - where this first attempt has gone is anyone's guess.

in your efforts to have your needs met, you can become fixated, so much so it swings and fixed to ceilings, the image of an ever turning trauma, the winds of change.

sometimes being a 'pack horse' on a cold day returning from celebration you can feel weary, but oh Lord its worth it.

another chance to educate and teach through learning and example, don't put your graduates in the broom cupboard while they wait to go up for their certs on graduation day.  

Finally, if you can't beat em you join em, and you study to learn, to transform and to bring a change about.  Margaret my twin the first of two to graduate from Limerick University on the first programme certificate post graduate course on wheelchair/posture seating assessment.  Devised by Dr. Rosie Gowran, Limerick University.

absolutely DO celebrate - deserved.

celebrate - for 'every little drop counts said the wren when he pee'd in the sea!

if the deck of cards never got yourself to university in order to do the post-grad what you do then is absorb the feeling and celebrate anyway, someone has done it! 

this happened three years ago when i went to the top of Killiney Hill for the very first time in ten years - now this is LIVING as an equal human being.
the wheelchair i had researched, trialled and felt was the one for me - is now winging its way to me.

it has been a very tough fight.
we will celebrate our newness as equals on Killiney Hill very soon, we will 'Party' there and invite YOU ALL, come party and celebrate, after all trials, tribulations and dramas, pain and trauma
-you celebrate-
-the success of the journey's end with a major win -

when once you knew we 'had not got this one right' (twin on right)

when we always knew what Equality means and Life is so short.....

Once we had the church now we have the HSE and they have abuse as their 'culture.' yah

we were sick at this time but -
we had not yet encountered the dreaded HSE!

a few years of HSE and this is what the 'Look' of that result is.

And again - this is 'the Look' after you encounter the HSE

there are lots of questions in my head.

but few answers bar one - its very hard for me to live now.
i mean terribly hard.

its the complex mix i cannot cope with, and i want to get rid of one or two of these.

Pain and Suffering now of a physical kind i think is here for good, i am trying to work on these.
getting care and medical oversight is about the hardest thing i feel i do have to struggle with and doubt it will get any better.

Choices now are out there for the doctors. who  they decide to treat and who not to treat.
i am in the latter catagory as nothing has been treated since i have got back with care plans from the UK and a lot more insight but less from the Irish medics and HSE.

i struggle to be heard.
i struggle to say my truth and be heard on the pain and path i am on.
i struggle.

when people say that there are good people within the HSe, yes of course, like any organisation (i dont know a lot mind you) there are good and bad.

we have a problem in healthcare.
the bad cannot be got rid of and secondly its barely about healthcare anymore.
its more about shifting the responsibilities further onto other groups away from the political arena and the departments that are running our country and our 'medical show.'

how do they shift it all over the place.
try sort a problem in ireland.
pick up a phone and ring the first person you feel may be able to help and the words go like this..."you are on to the wrong department, you need to ring....." and so on so forth...
this can go on forever.
when you get to the right department its like greased balls bouncing.

Doctors too can walk away easily now.
a letter citing 'the relationship has broken down'  can explain nothing but allow him/her move on and you get a reputation, for the doctors, wee gods are never to blame.
but they swiftly shove you off their books, in a country like ireland it doesn't do to ask for care because they then get irate and move you on.

this i think is a direct dictate from the HSE, do not treat your public patients.
so when the HSE say this, the public hospitals are charging everything to the customers it has on vhi where once before they never did.
so the VHI are swamped with claims making premiums rise and less and less taking up private healthcare.
so this is a healthcare system that is narrowing in the middle.
there are the poor at one end of this time piece, they cannot pay and are not getting care.
the very rich are at the other, they get everything and no sweat.

i think the worst thing to befall me in a life of distress predominantly was physical ill health.
you become a beggar.

you lose confidence, spirit, love of life, soul and trust.
you meet abuse, walk outs, blaming and shaming and slamming and more besides.

you fight as if you are on a tv program surviving in some jungle, is it 'get me out of here?'
what is that program.
so when you know you are getting a rolls royce of a wheelchair very shortly is that the result of the achievement of eating the first witchidigrub?
the aboriginal delicacy.

Post 'withchidigrub'  (getting wheelchair battle)

next for the next trick do i have to leap over five cows and then spear it in the neck and drink a gallon of its blood, like in some kinda initiation rite to get something further, shoes?  sticks? physiotherapy or what?

or is it more drastic than that.

YOu only have to need something in ireland for the word coming back to be NO>
NO YOU CAN'T.
NO YOU CANNOT have it.

this doesn't happen the rich.
because money buys the respect a doctor will hand to the patient.
and will get him or her the walking sticks, the nice proper bed and the medication.
in fact if you have money, you will never know how the poor has to try and survive the onslaught.
the myth of the state caring for the poor is just that, a myth.

the rich believe it.
not only that all the minority groups from the black people, the muslims, the Irish, the social welfare recipients, the drug addicts, the mentally ill, the elderly and the disabled are all the cause of the world malaise, (funny how these collectively make up the world almost in total, bar the few who are rich)
and its also strange to say this, but the rich cannot shoot them all!

why because its the poor, the blacks, the irish, the sick, the disabled and the elderly and the mentally ill that give the few professionals around their jobs!
especially in health.
so if you have no sick you will have no nurses or doctors.
if you have no irish or blacks, you will have no cleaners in the hospitals.
if you have no elderly or mentally ill you will have no vast caverns which employ a myriad of people and so all the walls around the world would not be enough to use as firing ranges.

you cannot simply get rid of the minority groups and the disadvantaged.
non possible.
i think you would have an easier job rounding up the rich and shooting them, or at least verbally accosting them with some strong words of truth.

you are making life a misery for everyone bar a few, yourself and why?
greed.
just plain and simple greed.

at 63 so many hoops and witchidigrubs.
so a brand new wheelchair from a broke HSE (despite offering to pay half of the funds) i am left now to fight on for the rest which includes everything else cos i have nothing regarding health care here.
nothing.
so the fight and the list is bloody long.
i am depressed at it all.

my dad wasn't depressed at this age, he was a happy man.
food was on the table, his children around him, his friends up at the golf club and he was not wanting for anything.
no memory of irritant gp's or angry doctors in them days.
the gp came to the house and laughed and bantered and sorted the latest to befall on six children.
and they did so willingly, up them stairs with the little black bag and a cheery smile for a kid in the bed.
i remember one doctor had a little guy, plastic and he would bring it to play with the young uns.
see now if you can balance this man on his feet and lets help him stay upright.
(distraction technique)

if you got a crack on your head it was a great big crepe bandage, no mri or ct scans and no hours in a waiting room of a hospital.
if you got a bloodied knee and a very big gash, no long waits in a'e the gp bandaged you stitched you and sometimes splinted you.

my dad was never in an A'E in his entire life until he was close to his end.
the knocks and biffs of life were dealt with at the GP or GP came to him or again it was in the bathroom cabinet or the cigar box cos the lids of these were used as splints on broken arms.

no antibiotics for the sniffles, no flu jabs, no mri, dat, ct nada.
no anti-inflammatory rubs, lemsips, paracetamol, braces for the wrists, ankles, or knees.

cod liver oil, crepe bandage, sticking plaster, vicks, bed and a hot water bottle.
it was the 'in-house hospital.'
none of our family spent hours in a'e.

what the hell are they there for now?
we had next to no Autism, menieres, autoimmune diseases, a cocktail of mental illnesses, with sub sets of different mental diseases groups and sub divided again.

you got a cut, a scratch, a broken limb or a bump on the head and a bit of blood.

you did have a lot of sexual abuse, magdelan laundaries, mental hospitals and mother and baby homes though.

incest was high, we had more in mental hospitals in ireland in the 50's than the rest of europe combined.
for everything - you were flung in there if you were happy and excitable, enjoyed the men folk, (and thats only if you enjoyed watching them at a cross roads), if you were pretty you were 'in' if you were not the elder male on a farm you were 'in.'
if you had a baby you were 'in' again at the magdalens.
babies were ferretted across to america for vast sums by the church priests and nuns.
to this day you were never allowed know where your family were or who they were.
starvation and beatings were rife.

but what have we in its place.
we dont pick on the pretty and the second eldest male, or the pregnant young ladies. we dont have sex with the little ones (oh we do so we do, still, sorry we do) and the young things, (oh yes we do) but then what do we have for the rest, we decently adopt, and give the child a chance to discover its mother.
we decently do not fling all and sundry into the mental hospitals, but then we indecently keep all the sick out as well.we have suicide rates rocketing.

we dont do much bar drug with every medication known to pharma.
money again, back to the same old thing, the blasted money.

we have drugs for everything, stopping a pregnancy, castrating a man, killing bees, bugs, flu and inflammations, we zap cancer and cause more through radium of mri, scans and ct and more besides.
we dont get a bump on a head we get concussion and delirium requiring a bed and an mri.

we dont get a cut on the knee but need the tetanus and the stitches and the A'e.

we do get 'bump em off.'
i am a 'bump em off' person right now.

i have no home grown remedies, and certainly lemsip and vick is not actually going to do much.
but my mum and dad lived mightly longly.
i will probably pop my clogs far sooner, either the doctors will kill me or the hospitals one or the other something will kill me.

i think the moral at the end of the day is keep the depression cos nothing else is constant, but chuck the doctors or try go outside this country which is abusive.
i guess when they closed certain institutions of abuse, they had to carry on the culture of abuse.
thats what they call whats happening within the HSE.

its a culture of abuse they say, even those who know the HSE, work with the HSE or for the HSE.
it takes a long time to rid a culture of abuse all these people say.

my dead dad died happy (i hope)
my sister wasnt happy (sadly)

Grasping facts - Is there any Magic out there
(eg NO HSE?) or 'Post HSE

i would like to think my retirement resembles the bliss of the two chihuahua pals i have.  alas, it isnt and alas i do not think i will be allowed it.
but then we have to believe in Magic or is it HOPE?
(no HSE need apply?)

so how many cultures are there in ireland.
or is the whole of ireland abusive to such a degree it will take a lot to change ireland.
would giving the whole country back to our once imperial oppressors sort the abusers?

as sure as eggs is eggs, abuse is alive and well and living in medicine rather than religion now in holy greedy ireland.

HSE master class for HSE staff 2016

My lesson from my bed - to you

Master Classes are an excellent idea.
Master Classes means and recognises that changes are needed and experts are invited to network with fellow man to make such shifts.

MY master class is the same.
it is constructed to bring about change but also to understand why it needs to happen.

it is of course in regard providing healthcare
i will look at the 'do's and don'ts' for professionals facing clients.
what is the relationship in the beginning and how it goes wrong

Once your patient client was happy and having some fun

once your patient client was Free Strong and Independent

Your patient had lived a lifetime - just as you have

your patient had lived a life full of achievement - just as may have or will

I will look at the broken client and the professional
what brokenness means to the client and to the professional.
How can one make brokenness whole
the cost effectiveness of an exercise to mend a brokeness

what is the relationship at the end and how it can be so right and move forwards 'onwards and upwards'

Do's and Don'ts

DO  REMEMBER:

• the client is sick (they are never going to be well if the professional is a healthcare professional.
• the client doesn't expect trauma or more trauma or stress or invites this upon them.
• the client usually is sick and only wants to have a decent life
• the client wants to be liked and also wants to like the healthcare worker
• the client is equal for we are all human beings
• you too could get sick and would expect it as equal, caring and decent life.
• the balance of professional and power in a sick persons life is not a comfortable one ever
• the person was a strong and is a strong person but vulnerability has seeped in, therefore sensitivity has to be really 'owned' by the professional, as part of the skill of being professional

DONT:

• come into an unknown person's life (who is sick) and expect a perfect relationship
• be demanding and persuasive because hairs on the back will rise
• act as if you are mother, father, boss or superior
• look down on a sick client for any reason whatsoever
• presume a person is one way unless you get to know them well
• say you understand their needs when you only speak to them on the end of phone or indeed never even meet them
• expect to be liked - that has to be earned
• expect a client or patient to be grateful - they are sick and you are providing a service through your professional career and you get paid.
• be put out if a sick person withdraws appreciation or is rebellious - they are sick
• expect it all to be rosy in the camp if you the professional have caused hurt and pain and suffering when the client sick patient was expecting nurture, care, calm and support and healthcare
• ham up and expect love back

What is the relationship in the beginning and how it goes so wrong

when a person becomes so unwell they need help from healthcare professionals they are walking into a situation that they expect by the nature of the professionals that they will receive care, they also want to be nice and respectful and they strive for a working relationship that initially will be incredibly strange.

if they never had much involvement in healthcare professionals in their home for instance it may be so difficult it is refused at first and it can be very uncomfortable to allow a stranger in and have to let them in over and over.

people who are sick and in such a situation are nervous, doubtful and afraid.

most sick people become physically weaker and not stronger, but if they are screaming and shouting it means they are in pain and upset and distressed and elders who scream and shout are undoubtedly even more so.

rarely by the late ages will a person change so drastically that you cannot determine whether pain and suffering is that or not anger, abusive or even dangerous.

Most sick people want a friendly relationship with a healthcare worker.

it is beneficial to have it so.

When the relationship goes jam side down, bottoms out or explodes to extremely poor connectedness it possibly isnt the sick persons fault.

something has happened to change a dynamic that started off with a shy and fearful patient wishing to engage and wishing for support and friendship.

patients do not create havoc when very sick, they just want to be held in care.

If a professional has made a bad judgement or been silly, idiotically unprofessional or cannot amend a wrong doing or has made a bad situation worse the only way it comes back on track is to view the timeline of wrong and see what went wrong and why.

then you right it, as swiftly as it occured you bring the relationship back to what it once was.

the longer it is left to fester the harder it will mend the relationship.

to defend a wrong doing is about the worst judgement statement any healthcare professional can make.

to label a client with strong words, abusive words and alienate them, is YOUR fault, not theirs.

it is always intrinsically up to the professional to act professionally.

it is not up to the sick person to either understand how to be a professional patient or how to have a relationship with a professional healthcare worker, its an alien relationship for starters but could be a friendly engagment, but its not up to the client to always be the one to stroke a professional and give comfort to the professional when the balance is not equal in status but should be equal in humanity.

If you are a professional and make a mistake immediately make amends.

investigate well, with strong investigative intelligence.

never judge before you have really looked at the situation from all angles.

if you make a judgemental remark on the sick persons character or personality you are doing it from a strangers viewpoint, because the professional is a stranger to that person.

you are not a relative, a friend, or a partner.  You are a stranger.  YOu are new in a new dynamic.

if you make mean and horrible remarks and let that fester or embellish it and refuse to mend that dynamic you are going to find it very very hard to win your patient back onto your side.

you are now making an enemy and making one fast and irreversibly so.

You are not their parent, their mother, their father - do not act as if the patients, sick person is a child or an idiot when they are possibly very intelligent and definitely an adult.

a sick person has operated their lives to this time in a certain way, with their own perceptions of their character and personality (they will know their weakness, and will not need more piled up upon them by a stranger), they will absolutely have a routine and certain way about the house, their home and the way they use their environment.

they also will know how their body feels when in pain.  they will know how their mind reacts to he illness.

they will not know how to react to aggressive stances from strangers who are also professionals.

this is way outside the known of a person who is now sick.

they will have a perception of a healthcare professional as being a cross between a saint and a florence nightingale.

they will be in utter shock if this myth is dissolved as like a disprin in water.

crossing boundaries are absolute no-no's.

this includes, crossing the rule that the house and home of the sick person is just that, the house and home of the sick person.

you are not entitled to make character and personality statements unless you have walked the preverbial mile in their mocassins.

you cannot expect a lick, a stroke or a compliment if you go against the truth a person has of themselves, their belief systems and their personal space and environment.

if you violate these, you have in fact just violated a person, you have failed now to hold intact values that are vital to ensure that confidence remains intact and that a relationship of mutual understanding can be embraced for a period of time.

it is never acceptable to break a delicate balance in a person's time when she is sick and vulnerable

i think once it is recognised that harm and damage has been done, the only way to go with this is to mend that.

it is never up to the patient, sick or disabled to patch up a mess another has created.

it will be arse to believe you will have a friend for life if you cock up on the patients patch, metaphorically and physically.

if you act like a lump hammer, you will be told you have in no uncertain terms.

this should be expected.

if you mess up in school or university or in the principals of friendships and make a pigs ear of it, you will be told in no uncertain terms to 'shape up.'

if you are a healthcare professional it doesnt exhonerate you from 'shaping up' and making amends.

in fact part of your training will already have been to care for an individual therefore making a bags of it all will rebound upon your professionalism and to bring it back on track, the whole thing on track amendments must be put in place.

a sick person doesnt have to be grateful to a professional automatically.

gratefullness comes about when its earned.

as is any relationship, trust, honour respect all have to be earned and can be utterly obliterated by constant harrowing experiences from the point of view of the patient.

if the professional is bloody sick of a patient who screams at you for what you are doing to their lives, their comfort, their peace and their home, and if she has a right to scream because you are doing bad things to her life, her comfort and her peace and her home then expect the scream until you change the way you treat a delicate person who now is sick.

if you butcher a person do not expect mercy.  your job was a professional one, and if you treat a person well, you will get this returned in spades.

if you consistently change goal post, renege on promises, withdraw care, abuse, name call, demand and are generally too much in the face of a patient who is not your relative, partner, lover or sister or mother or father than you deserve all you get - the role now has been redefined, by YOU, not by the sick person who had once great expectations and respect and now feels punctured and cruelly suspicous of your real intent.

when a broken relationship has been formed and cemented by injustice one upon the other, then a mending process has to be initiated.

Exhaustion through trauma, will never break down a great persons soul - people change so little - if they are composed strong they will remain strong but they also will change viewpoints in face of trauma

if you have a perception of the sick person then see if you are right.  go judge it.

and you can only judge this by meeting your patient regularly and be able to watch and view and shape up what their life is really like for them.

take on board their life style, their pain.  dont butcher it with your definitions, use the skills to view theirs.

you really do have to know your sick patient.

you cannot work in a relationship without knowledge.

you cannot demand over the phone, by email, by letter or by making remarks or withdrawing care.

you are going to feel shit by recieving shit back.

if you create a shit situation for another you should expect shit back, not expect a person to be grateful for abuse and pain.

you are the professional.

when hurt occurs and brokeness occurs a deep added wound has happened to both the psyche and the character and the perception of that person to that person of you as well.

wounded relationship once started with an expectation.

if its broken down you have lost it.

you have caused severe pain and suffering and the person can never expect to view you the same way again.

wounds of this nature are not easy to mend.

dont expect that if you add a little bit of care and do not show full sincerity and show compassion and understanding you will be met with suspicion.

once you show something of compassion and care in a generous dollop of genuine remorse and ownership, you are beginning to win your client back.

A haunted face reflects 'damage'  where deep wounds have been inflicted, this can intrincially never be eradicated

Once your patient client was happy
and having fun -
A wounded soul, and brokeness will bring but only an attempt of a smile, if so broken mending has to be achieved, once inflicted harm may never be eradicated

i doubt if deep wounds have been inflicted you can ever expect to have that person on your side again.

thats why divorce occurs in everyday relationships.

if its broken down so badly, you shouldnt expect to be received in the same light.

what you do is, you mend it to build confidence and allow the service which is caring to be trusted again.

you mend it for your own self respect not to win back respect.

you mend it because its the right thing to do as you hold the power balance.

if you mend it significantly then maybe you will see a shift and a coming together and meeting of minds.

you do this by engagement.

speaking to a person, long and hard getting to know them and understand them.

you apologise, you embrace the need for change and you change the dynamic never to break it again once you change the dynamic back to a healthy one.

you allow a person to be free from the reins of power which has so crushed and damaged them.

if they want that, the way you mend a broken relationship, you give a divorce agree it has broken down and offer the options available.

you work out a plan to start again.

you will win a person back and you will have a healthier relationship if you are honest, hear them speak and try their ways rather than insisting on yours.

cost effectiveness.

the patient who has been very hurt and wounded can only be this through time.

they then build a picture of how they see their care would be delivered to embrace them in care and  give quality of life back to their own selves and their own lives.

dont snuff of the offer of a different way.

it could be cheaper and get you off the hook faster and easier and cheaper.

you have been faced for a long period with a weeping, screaming banshee of a patient who is hurt, harmed damaged and in pain because of what happened in the relationship dynamic that should be equal in treatment of a human being but which has been damaged through power.

you have to 'give'.

there is no option to expect a person to see you, your healthcare systems, and your authority any other way than abusive if they have been on the receiving end of it

it is impossible to deny the damage done as its become -
a lived experience

it is impossible to deny the damage done as its become -
a lived experience

when abusive practise has profound consequences
it is seen in the face of the victim

if you want to turn it around to make it cost effective you work with them.

you mend it.

you save it and mend it for good never going backwards

No, the idea she came home to die through pain and suffering of unimaginable proportions was not something your client sick patient expected

and you admit it, and redress the wrongs built up which has caused a brokeness that the client patient never thought would happen in the first place.

My master class has ended.

the test has been set.

stop speaking

start mending.

you have...such and such a period left to do it....after that you will recieve your marks, either failure, pass or honours.

you chose, after you do the hard work, if you wish to pass a master class with flying colours.

when your hand reaches forth and says in tone, word, action, compassion and care -
"come out, do not be afraid, i will give you care"

This is the day your wounded sick are waiting to hear but also the only real answers are - ACTIONS

when living in Ireland really means 'existing' when you have a disability

many things go through my mind daily.
unfortunately far too many rumble around during the night making me restless and wrecked.

most of it is described in one word really, that is 'Disbelief.'

nothing prepared me for living in Ireland with a disability.
Nothing prepared me for our healthcare service providers, these are the agents of the state who are funded by the state to care for the sick, elderly, disabled and young and mentally ill and learning disabled, frail, vulnerable and poor.

now with a brief like that you would begin to think that they would have skills in one department anyway - empathy.
they don't.

But also its the largest employer in the state too.
So there are thousands there, providing care for sick, elderly, disabled, young and mentally ill, learning disabled, frail, vulnerable and poor.

given that many of us will land in one or more of these categories, i fear for the future under a regime that is but that, a torturous regime of trying to Live in Ireland at all under this regime.

they understand one word usually - its 'No.'

what i cannot quite get my head around is this....the budgets.

if we have categorized budgets how is it that vast swathes of people are saying either on secret forums on facebook, in the media (which isn't secret) in letters to the media, which also are not secret, in research papers, at conferences and through ceo's of many disability organisatons, through campaigns from charities, organisations supporting various groups that care is non-existant.

if it is non-existent - where is the money actually going?

we have more people on waiting lists for medical proceedures than ever before.
more people lying on trolleys in A'E waiting for a bed than ever before.

the stuff of a healthcare service that people simply cannot source and cannot source in droves are the following and i badly need an explanation from the state why are all the people of ireland suffering so severely now when we once didn't do so badly at all.

• major waiting lists for routine surgery
• scans as in mri, dat, ct, ultrasound
• neurophysiotherapy
• physiotherapy
• dental care
• wheelchairs for growing children
• safe wheelchairs for adults
• respite (no-existent)
• hydrotherapy
• psychology
• neurology (there are more neurologists in mongolia than ireland)
• dietitian (we have very few)
• meaningful occupation for learning disabled adults once they leave school
• no place for same group to go to once they leave school, and all service provision stops when they reach 18, all that they had cease with a number, their age.
• no human rights whatsoever
• no neurorehabilitation (ongoing campaign at present with NAI
• no social workers for the most needy.
• no take up of posts in psychology and social work in many areas for years.  Leaving adults and children without these vital services (my area being a case in point).
• PA's cut backs
• home help cutbacks
• home care packages cutbacked.
• nursing homes - severe shortage but at least i am pleased about that, for in these places you just wait to die, they are nothing more than holding pens and prisons.

• we have rampant abuse in the following places reported daily or almost daily:

1. nursing homes for the elderly
2. residential care for the learning disabled
3. abuse of individuals in foster homes
4. abuse and lost children in care of the state because their families can no longer care
5. abuse in the community (yes i have heard of a many cases)
6. abusive practise that children who are mentally ill are put in adult services and hospitals for mentally ill.
7. abusive practises of young offenders being locked up for hours
8. abusive practises of young offenders not getting food for over 18hrs. (i never offended and was left without food for 24hrs because the hospital couldn't get their head around the fact i am ceoliac, so they didnt have it, so didnt provide!)

we have expenditures which are inexplicable and incomprehensible:

• a full legal department within the HSE whose sole job it is to defend every little wrong move the HSe make, and i mean every single iota of documentation is scutinized by this legal team, especially if there are complaints against the HSE, it begins a roll on forever that everything has to be seen and done via the legal teams.
• taxi fares for employees of the HSE is marked as millions a year for them, yet all transport help has been denied every single sick person in ireland today.
• charity CEO's are earning extraordinary wages, i mean astonishingly high wages.
• ten per cent more managers now in the healthcare system than ever before and its worsening by the day

the healthcare system is so terrible today in ireland that its classed as the second worst in europe

AND we have no human rights, as we are the only country now in Europe not to have ratified the Rights of those with disabilities.

two people fight for care right now, I will name them here as case in point.

they are myself and my twin sister.

soon we are to get two wheelchairs, they are state of the art wheelchairs, and have come at great cost to us, up until now we struggled in bangers which ended in the following:

• ann has smashed into a granite wall opposite the hospital she was making for when the wheel fell off (they had been affixed by the wrong bolts so the report stated)
• margaret had been taken for a very unwanted ride into a massive cluster of nettles, missing a steep gully by inches when all manner of things were found wanting on a ten year old lethal banger of a machine.
• ann has slithered twice away into sides of paths for no good reason other than the wheelchairs were basic and only meant to go collect milk and bread not go and enjoy the nature of the changing colours of autum.
• we have had split tyres and left stranded in the capital, stranded in a different county.
• full panels of a wheelchair falling away as one was crossing a road.
• a wheelchair jack knifing off a ramp because the arm became lose suddenly as one sick older lady was guiding it in, she could have been seriously injured, same woman who ended in nettles rather than down a gully with the wheelchair on top of her.
• throttle knob coming away in sick persons hand when guiding it out of a van down a ramp.
• left without a means of getting out and about for a full summer.

we are getting super dooper wheelchairs and everyone in holy ireland will be jealous.

i think they will be rightly jealous but this doesn't tell half the story once they see what we have finally got.  there is far more to the story and many may not understand it when we tell them, we are a funny country by half, so we are.

the government of the day is baying for private healthcare provision over the public way these days.

they are presently running the public services to a non-existent state of affairs.

i do not approve.

i believe in public healthcare because i believe all should be covered for healthcare provision, getting sick, being frail and being disabled are not actually career paths any of us chose to take.

nor do i believe in having healthcare for those who can afford it and none for those who cannot.

so what is the story that is profoundly sick in the above story here.

both myself and my twin have clung on for dear life to our insurance policies, our father started these off for us when we were tiddlers and we kept them up in 'the good times,' and we did have that even if i personally never worked, but i kept this policy up and stuggled to do so.

we did this at a loss of many other things - we do not socialise much, we do not drink, we do not smoke, we do not go out for meals, theatre, films or party.  we have also no dependents which is useful too.

we live a very frugal lifestyle because we have so little funds, but we do keep paying into this insurance policy.

why - because we are fearful.

what the policy doesn't give us is a means to get our needs met, we do not go to private consultants (we cannot afford the down payments), we do not get private physiotherapy (we cannot afford it and the pay back through insurance is only 13e out of every 50e spent) , we do not use the private healthcare system because our policy doesn't allow us to.  The policy is a hospital one, meaning if we get sick and are in hospital many things will be free, but we have never been in hospital in a many a long year to be able to avail of this policy.

but what IS in the policy is a fund to the value of 6 thousand, which we can use, to get appliances, the appliances are few and named, you can get false eye balls for instance and you can get wheelchairs.

my twin and i wanted to try and enjoy what was left to us, and we call being outdoors enjoyment.

note the above types of entertainment which most will avail of and we do not.

we are solitary and isolated and partly by choice but partly not.

we viewed the wheelchairs as 'outdoor wheelchairs' to bring some quality of life into our lives, which are bleak and getting bleaker.

but these are more expensive than the usual chairs even the sophisticated chairs are expensive, but most powered wheelchairs are anyway, if they are to be worth the use they are intended for.

the funds available through our insurance was offered on a plate to the public healthcare provider, this was significant actually, half the cost of the wheelchairs.

the public provider refused this money.

now my bank balance reads as a big fat zero.  thats scary and only recently found this out, and i am scared.

but while i am restoring some paintings to sell to keep up my healthcare insurance out of utter terror of the public health care system, you cannot have it both ways.

the Government of the day and the HSE cannot have it both ways when offered from the coffers of an insurance policy half the sum total of these wheelchairs.

why did they not accept this money when they consistently tell us they are broke and i mean slash down broke.

because they couldnt really get their head around two questions they asked themselves, and these questions they usefully put on my HSE files:

who would own this wheelchair?

what happens if we need to take it from them when and if they become unsafe?

grappling with this now for well over two years they couldn't come up with the answers, (even with a full department of a legal team).

so what do they do, they buy the whole shebang and so avoid answering them at all.

i mean, answering two questions to me is 'simples.'  it shouldn't have taken two years to be so unable that they abandon the questions entirely.

it could have all been worked out on paper, as a collaborative affair, saving the HSE thousands.

as they couldn't answer the questions, they lost a small fortune which could have freed up funds for other care and services.

so don't look on these wheelchairs as a kind of excessive expenditure on us when in reality half the cost could have been funded by us which would have left the playing field level and the cost as average to them for very sick people.

what has turned out to be excessive for them could have been average for them.

i tell you my readers of my blog, it just stuns me the logic of all this, absolutely sends me in a spin of incomprehension of the thinking behind their logic.

i want all to know that not sorting out problems, answering questions and doing it all a different way is costing the state a bloody fortune.

so when you see us out walking the dogs via a wheelchair for legs and see an elaborate affair, don't be jealous, be angry.

not at us.

but at them.

because lord knows we tried to be fair, we tried to halve the burden.

if they refused. they refused.

it wasn't that we did not offer, we did!  it wasnt our money, it was our insurance which we have been paying into since we were born first by my dad and then by me, struggling never working but still doing this out of fear.

my biggest problem now is that my bank balance is zero, i have to try and sell something, and i mean this.

my next biggest problem is my mind goes blank when i consider state wastage of money.

its like being shot with a stun gun so it is.

V4 is coming my way.

its a bit of a tank, like as in war.

if they dance all over their generousity i am putting the true story behind this one out first.

before they begin to glout over their wonderful generousity, which will surely come, so the facts have to be put to the public because when questions start to be asked as twins go out together, the questions will be answered not in two years hence but in one month prior to receipt of wheelchairs.

it isnt that funny.

its outragous in fact.

its very wrong to run a country in this fashion.

its arse to me.  it remains arse to me.

but its also a very traumatising system.

but of course you have heard most of that part and i see no end to it.

today i was suicidal, but as this blog is long i cannot dally on the feelings in my brain because of PTSD, i am not having a good time, but i am setting things straight here and preempt a situation surely to happen in our holy country.

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