it is not difficult to say what the HSE have NOT done for two sick women in ireland

Irish heathcare, the Irish HSE.

studying the 'form'

she is also sick and tired of being sick and tired

a pretty embattled scene we have here, i truly hope our minister for health can effect change.
it is tough though being at the receiving end of er, nothing

how many people know how terrible our genetic services are? they are this terrible!

its tough for the fight for care has now gone on for ten years.
what do you do? Expose them?

its very sad to even know, that all, patients and clinicians, hse and departent of health know this fact!

I think you have to.
you can do this through naming the departments approached and the inaction that resulted.
Lets first look at "needs" these are those that the consultants both irish (with international acclaim) and UK professors,head of centres of excellence.
there has been a significant amount, all top and noteworthy.

the hse turn a blind eye.

knowledge breaks ignorance and should bring change. worth a try?

DESPITE saying they would 'honour' the UK reports - they have not.

who is in charge?
Well Tony O'Brien is of course the Director General of the HSe.
he received some emails from top notables, including the retired chief ombudsman for Great Britian and x MP who is my first cousin - he got the standard letter they all got.  it didnt say alot.
the other departments in charge of areas of great concern were all contacted and no response or input,namely - Department of Primary Care, Department of Social Care, Department of patient care quality ??? and Department of Quality Care verification ( i kid you not!)
there were others too, all notified, Ms. Marian Meany, Dr. Aine Carroll, Philip Crowley, and far more.  these are HSE department heads.

they got a run down of my complex disease and our great need.
they didn't respond.

we met Ms. Meany and felt she was nice enough, but effecting change, nah.
We met someone from the quality division, very nice indeed but not a lot coming from that either. He does want me back doing my artwork - oh ye gods i wish! but i still have to make sure i stay alive and get care. 
i have contacted the department of health who say they have no remit over the HSE, i kid you not. they only pay them their wages, well who pays their wages - we do!

so what have i asked for, well:
requested ten years ago and still being requested by top consultants in uk and ireland;

• ongoing physiotherapy ( the hse have a problem with understanding the term 'ongoing' so while they grapple with that for the past ten years we have got nothing.  we get some now, but have been told it will be in small blocks and then six months nada again.  small blocks are six sessions.
• hydrotherapy waiting ten years to dip a toe in a warm pool yep not seen and recommended.
• metabolic nuitritionist - dont think we have them here in ireland
• neurophsyiological work up - don't think we have them here either, we havent seen one and badly need to.
• rehabilitation (whats that?) we don't do that, only in worse case scenario, eg stroke or spinal snap.
• bed surface begging for five years to sort this, through all the above and my area take note of it - in case you feel able to lobby for us - Area CHO6 - manager there is Martina Queally - never met her and dont even know what she looks like.

its so so easy too not to put a face on a client you might begin to 'feel'and that would not be good.

we have a serious problem here in ireland, unlike the UK where they have been hauled over the coals for human rights violations in europe, we can't get that far -we have no human rights so the europeans cannot intercede for us - so much for being best buddy in europe and we giving them all our money!

ireland hasnt ratified the convention on rights for those with disabilities, human rights which means, we either are shit and not human and dont deserve them or we are not equal therefore shit and dont deserve to be noticed

can i come on board? will you have me?

'at the heart?' I feel i am biting dirt and being treated like dirt.  No heart involved at all, at all

it all sounds GREAT, but - where does it get us patients - at the end of the day, do we or have we ever counted.

i am not going away HSE
soon when i recover enough, you are going to see a lot more of us.  and i am thinking serious campaign with information on the damage this group has done to me.
there is some major stuff on my hse files i would like to get out in the media.

it would make your hair curl.
any international individual who reads my blogs, and are moved will you contact Mr. Tony O'Brien DG and ask him what the hell is going on.
should it take ten years to provide basic care for people with a progressive neurodegenerative disorders and will you ask him while you are at it, does Ireland have a eugenics program on at present.
i believe it has!
i also believe the medical confraternity are being bribed not to treat as is happening in the UK, i believe its happening here.

i simply wont allow you kill me off 

yep! says it all!

Irish Healthcare Public/Private divide totally unworkable for the sick in Ireland

over two weeks ago i became very unwell.
an ambulance took me to a public hospital after uncontrollable vomiting and pain and far more.
seven hours later i had not seen a doctor, my twin was brought in by her neighbour as i lay in agony alone in a back room of the A'E department.   It was now well after midnight.
A drip was put up soon after and i do not know what was in it, but i seemed then to ease in pain anyway. No scans were done to determine if i had a crohns blockage, or a tear or rupture or bleed or whatever.
my twin stayed a short while and got a taxi home, we have to remember she is very unwell too.
i lay there all night, and as soon as day broke i was told i could go home.
this is astonishing as i was so unwell the previous night and had not yet seen either my own consultant at the hospital nor an A'E consultant.
i was pressurized to leave so at 7am i had to literally take up my blankie and pillow and get myself to the front doors and go home by taxi.
not even a cup of tea was given and i had been vomiting at 5pm the previous night for at least an hour or more.

I struggled at home for a week.  the story of that is in another blog previous to this.
i struggled staying with my twin until unfortunately i had to again at day break get into my own adapted van and drive to a private hospital with my wheelchair in the back.
i have and still do have a lovely consultant i no longer can afford to attend who will be able to facilitate me getting into an actual hospital in ireland for care but that is all really.
i was admitted and spent two weeks very ill indeed and on three different drips.
on returning home i am failing to recover to my ordinary self.
i am in a lot of pain and also have gut issues still, and i am concerned.

in this period my twin became unwell.
she developed a very bad cold and was getting so unwell i suggested that i would drive her to this same private hospital, at least it would not be so chaotic as the public and i felt sure she would be admitted.
she wasn't able to sustain being at home with all this.  For many a head cold or flu is surmountable, for a person with a rare and complex disease process with co-morbid conditions its a nightmare to transcend the slightest  of setback.

we also have little support in the community for these times, the only one on offer for me was to go into a nursing home for a full week and this would have cost the tax payer over 2k at least.  they were offering me a private nursing home in my own village when i was to be discharged.
i needed a few hours help each day to recuperate sufficiently, not 24/7 oversight for another week a sniffing distance from my own home.

My twin arrived at the A'E (ED) Private, and i had to leave her there as i was not well enough to stay with her, i was going to my own GP with retaining issues after my own inpatient stay a short while ago.
 I was getting physio that day during which i got a call from her to say she was being let home!

i was aghast!
i rang back but she is very deaf and i wanted her to urge the team to keep her in, she was far too unwell to come home.

the physiotherapist tried to contact her but we could not get an answer. He too wasn't that happy she be sent home.

When she came home, she had now coughed up (excuse the pun) over 500e in expenses for tests at this Private hospital.
with a spot detected on lung x-rays and swollen lower legs, she now was to go home!!!

NO, she didn't get better and got increasingly unable to cope.

Again, she lives alone and by this time i had also developed her cold and still had the pain and hang-ons from my own health issues that saw me hospitalised only a few weeks before.

night after night my twin struggled horribly, both of us up all night sick, unsupported and isolated against the whole world in sickness, without a person to turn to in this state.
she managed to contact her GP today and she/he advised that she go back to the Private hospital and say she is too unwell to be at home.
i drove her back up, i am now getting more and more sick with the same issues she has.
she was brought into a cubicle and a registrar,  i think, wanted to do the full blast of tests on her to determine her health status.
we both in our distress told him that she had a myriad of tests only a few days previous to today  and it had cost her 500e.

he apologised but said he would have to do the tests again!
both of us got profoundly upset and distressed at this bizarre forking out of now 1k for tests when she should never have been sent home in the first place.

this caused both of us to become shattered and beyond richter scale stressed.

we did ring an older sister who announced 'Extortion!'
i felt that too.
i suggested my twin ring the Insurance company for clarification.  we both now were on our knees.
thank god a nurse came in and announced she was being kept in.
we didn't need that patch of distress.

how do you tell the Irish doctor base we are NOT simple patients that can withstand the usual slings and arrows of health crisis?   
Certainly i was sent home and within a week was sicker by far and a new disease process had now been added to my mounting 'sick disease stamp book collection.'
This happened my twin
It's a madness that we have a system that you cannot be kept in a hospital in a public bed because you are a public patient and the new gold is to get those with insurance to pay through the nose for the bed in the public hospitals to the horror of the people of Ireland and also it is driving the Insurances up so terribly more and more are leaving that cos they cannot afford it, so now we have the added strain of public patients on stream due to a very unworkable divide.

You cannot get public healh care - really anymore, and we have had the whole thing played out on - 'waiting on the trolley list' of a documentary RTE did recently - a horrific tale of tragedy,  a dangerous system and people being left too long endangering their lives, the future and death has occurred in this melee.

you can pay over two thousand euros for private healthcare but then what if you have NO disposable cash and are entitled to a bed if very ill to be covered by insurance but yet when you go to a private hospital they take 500e and send you home!
then they ask for the same amount when you have to go back even worse.
finally you are in that precious bed and everyone is weary.

This is turning into a nightmare.

we also have the chaotic primary care system.  without anyone to keep two women healthy in all regards we remain of of sound mind and sparky but such a system has left these two lovely women suffer horrendously.

its unworkable at present.

this sick individual cannot care for my twin sister who is also sick and vis versa.

we both are entitled to healthcare under both Irish systems.  Public and Private.
we are also entitled to care in the community but are not getting it.

the answer to everyone is - you cannot manage you need to be in a nursing home.

Abuse stories within these awful institutions are daily reported in the media, and we have an agenda through agreed policy to get disabled people out into the community where they should be and not in the nursing homes.

On the one hand they want us disabled to be cared for in the community (we are not).
 they promote the social model of care (they are not using it but completely and utterly abide by the old model, the medical one).
you cannot get into a public hospital and be cared for.
you cannot get into a private one either.
where the hell do they want us to be???

i am not going into an abusive institutionalised system where once i worked as a volunteer bringing 'arts & empowerment' to the elderly corralled there against their wishes but dumped by uncaring families.
I am not going into a system where daily we hear of the abuse, even the last nursing home i was working in has recently hit the headlines for its abject abandonment of the elderly to no more than the daily 'catholic Mass' and sitting aimlessly the rest of the day waiting for probably a tasteless lunch and dinner and bed early and no escape from this tedium, boredom and depression.

HOw do i actually afford Private healthcare?
I can ONLY afford the policy, i cannot go privately as i have no disposable cash.
I can ONLY use it if the consultant takes me into the hospital as an inpatient.

How do i afford the Private insurance of over 2k yearly -well recently i sold a painting i had inherited that was my parents wedding present from a minor RHA.
it recouped the sum of 710e and that still is way short of 2k.
i have three other far smaller paintings by the same artist, so i am not hopeful i will have the funds for the Private health insurance this year.

this irish healthcare system is totally unworkable.  you be damned one way or the other.
phone call from my twin, she is still in ED waiting to get to a bed.
sick, i am.

IRISH MEDICAL AND HSE TIMESCALES/FRAMES

CALL IT WHAT YOU WILL, BY ANY STRETCH OF THE IMAGINATION, WE ARE NOT EXACTLY IN 'THE FAST LANE' ON THIS ONE.
WHEN WE GIVE TIME FRAMES, REGARDING OPENING OF...BEGINNING SUCH AND SUCH ....STARTING WHEN?
AND ALL MANNER OF TIME SCALES, WE GET IT BADLY WRONG.
BECAUSE ANYTHING SUPPOSEDLY TAKING A YEAR TO IMPLEMENT HERE, USUALLY TAKES TEN OR MORE, ESPECIALLY IN HEALH CARE PROVISION.

THERE IS A DISCONNECT BETWEEN THE WILLINGNESS TO BEGIN, THE NERVOUSNESS TO BEGIN AND THE STINGINESS TO BEGIN, NOT TO MENTION THE INTENTIONAL STALLING TO BEGIN - FOR ONE PURPOSE ONLY, TO SAVE THE FEW COPPERS.
IN THE MEANTIME WE ARE WRECKING PEOPLE'S HEALTH AND COST EFFECTIVELY IT IS WRECKING THE ECONOMIC LANDSCAPE.
PREVARICATION ON DELIVERY IS NOT COST EFFECTIVE, AS DESTRUCTION OF BODY, FUNCTION, DISEASE INCREASE USUALLY COSTS MORE IF NOT TACKLED AT THE EARLY STAGES.

LETS TAKE A FEW INCIDENTS OF THE TOTAL DISCONNECT BETWEEN SICKNESS AND NEED AND HOW FAR THE HSE STRETCH THE SEMANTICS TO PUT OFF THE EVIL DAY TO PROVIDE FOR THE CITIZENS OF THIS STATE...HERE GOES, AS IN THE CASE OF THIS INDIVIDUAL.

SHOES FOR FOOT DEFORMITIES...WHAT HAPPENS WHEN WE DO IT 'CHEAP'
HERE IT IS:
2006: 'ANN IS UNWILLING TO WEAR THE SHOES WE PROVIDE.'
THAT MY FRIENDS, IS BLAMING THE SICK PERSON WITH FOOT DEFORMITIES, MYOPATHY, NEUROPATHY AND OTHER.
IN 2017 SHOES WERE SOURCED, BUT ONLY AFTER HSE CAUSED TOE NAILS TO BE RIPPED OFF FROM CHEAP SHOES, FALLS OCCURRING FROM SHOES THAT WERE TOO HEAVY AND CAUSING 'FOOT DROP,' AND ILL SUPPORTIVE SHOES SHOWING MINI FRACTURES IN THE PES  CAVIS AREA OF THE MIDDLE FOOT.

THIS HAS CAUSED YEARS OF AGONY FOR THIS SICKIE AND I HAVE NO DOUBT THE LACK OF ABILTY TO WALK WELL HAS INCREASED THE PAIN AND THE INABILITY TO WALK WELL AND SAFELY RESULTING IN NUMOROUS FALLS, CAUSING FRACTURED RIB, TORN ACHILLES, SNAPPED SHOULDER MUSCLES AND TORN OFF TOE NAILS.

COST OF THIS TO THE EXCHEQUER, XRAYS,SCANS, PHYSIO, CONSULTANTS VISITS AND HASSLE TO DEFEND THE INDEFENSIBLE.

LACK OF BED SUITABLE FOR A PERSON WITH A PROGRESSIVE NEURODEGENERATIVE DISORDER.
HAS LED TO SEVERE NEGLECT, LACK OF SLEEP, INCREASE IN PROFOUND DISTRESS,INCREASE IN PAIN AND HORRENDOUS NIGHTS.
SLEEP DEPRIVATION CAUSES INCREASE IN SICKNESS AND ILLNESSES.
DESPAIR INCREASES DEPRESSION AND THE ANGST IN ENGAGEMENT LEADS TO VERY BAD BLOOD AND LACK OF TRUST ON THE ONE HAND AND HATRED.
NOT SORTING ISSUES WITH SICK PEOPLE BUILDS UP AN AGRO SECOND TO NONE, AND ITS GRIM FOR BOTH PARTIES, BUT LETS BE CLEAR - LYING TO THE TAOISEACH THAT I HAVE BEEN SUPPLIED WITH FIVE DIFFERENT MATTRESSES IS NOT A TRUTH YOU SHOULD BE UPHOLDING BECAUSE YOU HAVE NOT PROVIDED ME WITH FIVE MATTRESSES, YOU HAVE PROVIDED ME WITH NON SPECIFIC,NON DISEASE APPROPIATE BED TOPPERS,AND THAT IS NOT A MATTRESS, AND THIS IS NOT A SKILLED PROFESSIONAL SERVICE, THEY ROTE THAT ONE OUT TOO - AD NAUSEUM AS THEY CONTINUE TO DEFEND THE INDEFENSIBLE.

 2006 - 2017  AT LEAST FIVE TOP CLINICAL CONSULTANTS AT THE TOP OF THEIR FIELD IN NEUROLOGY SERVICES IN IRELAND AND THE UK CLEARLY DEFINE THE TYPE OF AUXILLIARY CARE WE SHOLD BE HAVING, 'ONGOING' PHYSIOTHERAPY, AND HYDROTHERAPY.
BUT
WHAT THE HSE WANT TO KNOW IS, 'WHAT DO THEY MEAN BY 'ONGOING?'
MOTHER OF GOD I KID YOU NOT.
THIS TO ME IS PLAYING DUMB, AS ONE OT HAS ACCUSED ME ON FILE OF DOING, WHEN I AM SHARP AS A FLIPPING BUTTON AND SURE AS HELL, MEETING HIM TWICE HE ISN'T IN A POSITION TO SAY THIS.  DUMBNESS, BUT ME SAYING IT FOR TEN YEARS WHAT THE CONSULTANTS RECOMMEND IS PLAYING DUMB BY THE HSE PROFESSIONALS, WHO DO NOT UNDERSTAND THE TERMINOLOGY OF 'ONGOING' AND WISH THIS TO BE CLARIFIED BY THE CONSULTANTS IN 2017.
MY GP IS OF THE OPINION ITS PRETTY SELF EXPLANATORY.
WHAT ELSE ARE WE PLAYING DUMB WITH AND AT HERE.
DATA BREACH.

COPPER FASTENED IN THE ACTS OF THE DATA PROTECTION THEY CLAIM THEY HAVE IT SUSSED.

DO THEY?

WELL INTERNAL EMAILS ASKING FOR HSE PROFESSIONAL A'S KEYS TO HER FILING SYSTEM, FROM HSE PROFESSIONAL B BECAUSE HSE PROFESSIONAL A HAS GONE ON HOLS AND PROFESSIONAL B WANTS TO SEE WHAT SHE HAS SENT THIS WOMAN NAMELY ANN KENNEDY.

 SO SNEAKING INTO ANOTHER PERSONS FILING CABINET WHEN THEY ARE ON HOLS AND EXTRACTING DATA VIA A SECRET KEY IS NOT PROTECTING DATA AND IS AN IRREGULARITY SECOND TO NONE IN MY BOOK.  YOU DON'T GO POKING INTO FILES IF YOU DO NOT HOLD THE OFFICIAL KEYS TO THEM FILES, YOU ARE BREACHING THE DATA PROTECTION ACT.

OK ECONOMICS ON EFFICIENCY.
2014 TO GREAT APLOMB, WE OPEN THE RARE DISEASES OFFICE AT THE MATER BY LEO THE LION GREAT, THEN MINISTER FOR HEALTH.
WELL, THE RARE DISEASES OFFICE IS NOT OPEN TO THE PUBLIC AND CONSISTS OF A HOLE, DEPRESSION ON A WALL WITH A RACK OF A FEW LEAFLETS, NOT EXACTLY LAUNCHING MUCH WHEN IN 2017 A 14 POINT PLAN TO BE IMPLEMENTED UNDER THIS RARE DISEASES PLAN HAVE GONE UNDONE, UNTOUCHED, UNACHIEVED, BAR A RACK OF LEAFLETS,COME TAKE AND GET THE KNOWLEDGE, BUT WE HAVE NO 'REAL RARE DISEASES PLAN'  A ROUSE TO THE PLEBS.
AND A MEDIA COVERAGE OF SNAZZY SHOES FROM A WHEELCHAIR PERSPECTIVE AS I SIT IN THE FRONT ROW WHEN THE 'RARE DISEASES PLAN' WAS LAUNCHED IN 2014.

PREVARICATION IS CAUSING HARROWING CONSEQUENCES TO THE MASSES, AND CONSISTENT BLASTING TO THE MEDIA HOW BLOODY WELL WE ARE DOING WHEN THE FACT IS - 
NOTHING IS BEING DONE AND PEOPLE ARE SUFFERING BADLY.
YEP.

SO CARE PLANS, FROM UK TOP CENTRES STATED AS 'PROMISE CROSS MY HEART, HOPE TO DIE' WE WILL HONOUR WHEN THEY ARE BACK, AND PREPARE TO DIE AND IT ISN'T THEM THAT WILL BE BECAUSE THIS WAS A ROUSE AND ABUSE COS NO CARE PLAN DONE BY THE UK HAS EVER BEEN IMPLEMENTED, FROM A SOFT NECK COLLAR FOR NECK PTOSIS, TO ONGOING PHYSIOTHERAPY AND HYDROTHERAPY AND MORE BESIDES,NEVER BEEN IMPLEMENTED.

DON'T PRESENT THE HSE WITH PHOTOCOPIES OF THEM REPORTS THEY WILL JUST ABOUT STOP SHORT OF ACCUSING YOU OF FORGING THEM, BY SAYING THEY CANNOT ACCEPT AS 'THESE SORTS OF DOCUMENTS HAVE BEEN KNOWN TO BE FORGED.'

I KID YOU NOT.

SO IN THE SPACE OF TEN YEARS A HECK OF A LOT OF MONEY HAS BEEN SPENT ON EMAILS, LETTERS, DEFENCE LETTERS JUSTIFICATION RESPONSES TO TD,'S IN ANSWER TO THE NEGLECT PERPETRATED ON CITIZENS OF THE STATE.
THE ONLY MONEY THE HSE ARE WILLING TO SPEND IT SEEMS IS ON THE LAW DEPARTMENT WITHIN, OR FANCY LETTER WRITERS WHO CAN WRITE A GOOD LETTER AND STOP THE ADVOCATE.
WHEN THE DEPARTMENT OF HEALTH INFORM ME THAT THEY GO BY WHAT THE HSE HAVE TO SAY, DOES ANY ONE GO BY WHAT THE HSE HAVE TO SAY?

 WELL WE KNOW WE CITIZENS DON'T AND NEITHER DO MOST EUROPEAN COUNTRIES, BECAUSE NOT A LOT IS BELIEVED FROM THE HSE, 'FACT!'
BUT THEN SHORING UP MAFIOSI STYLE, IS VERY IRISH I HAVE TO SAY.

TEN YEARS ON, SINCE I GOT SICK NOT A SODDING BIT OF HELP HAS BEEN OFFERED IN ANY CONSISTENT FASHION WHATSOEVER AND WHAT IS GIVEN IS SO SPORADIC AND INCONSISTENT, ITS NOT WORTH THE EFFORT TO IMPLEMENT, PIECE MEAL AS THE LONG DELAYS IN ACTION IN BETWEEN THE BITS OFFERED CAUSES HARM.  

 DELAY MEANS NEGLECT AND LACK OF CARE INCREASES DISEASES, BODILY FUNCTION AND HASTENS DECLINE.


BUT TO THE HSE ITS CALLED, THE ECONOMIC WAY TO GO,IN FACT CAUSING DECLINE MEANS NEEDING MORE AND MORE CARE IN THE FUTURE,SO ITS NOT COST EFFECTIVE TO PUT OFF THE EVIL DAY OF OFFERING CARE, THE COST WILL BE DOUBLED OR TREBLED IN A FEW YEARS OF WASTING THAT TIME AND THE HSE ARE IN DENIAL.

DOCUMENTATION IS THERE, TREAT NOW SAVE COSTS IN THE FUTURE AND MEGA  COSTS IN THE FUTURE.

DUMB THINKING IS NOT PART OF WHO I AM, BUT FALSIFYING THE TRUTH OF WHAT A HEALTHCARE SYSTEM IS DENIAL.

IF WE OFFER NO CARE TO THE SICK, WE CAN SAY YOU ARE RECEIVING PAYMENTS UNDER FALSE PRETENCES, YOU ARE STEALING FROM THE TAX PAYERS, AND OFFERING NOTHING FOR THE WAGES AND INPUT YOU CLAIM TO BE OFFERING.

 WHEN YOU ARE OFFERING NOTHING AT ALL, BAR FANCY LETTERS TO SHORE UP THE SELF DECEPTION AND WHEN YOU DO THAT, YOU ARE ABUSING YOUR ROLE IN THE PROVISION OF HEALTHCARE. THE ONLY REMIT OF THE HSE IS TO PROVIDE HEALTHCARE.  

IF YOU DO NOT, YOU ARE GUILTY OF STEALING AND NEGLECT AND INHUMANE PRACTISE AND SQUANDERING THE ECONOMICS OF THE FUTURE,BY BEING SO GROSSLY UNECONOMICAL IN THE SHORT TERM.

HSE ARE BEING DISINGENUOUS TO A FAST SWATHE OF THE IRISH POPULATION, WHO ARE SICK, DISABLED, ELDERLY AND NEEDY.

GET REAL, THERE IS NO SUCH THING AS TRUTH WITHIN IRISH LARGE ORGANISATIONS, GIVEN A BRIEF TO DO SOMETHING AND YET DO THE EXACT OPPOSITE.
MIND BOGGLING ABUSE OF POWER GOING ON

inhumane HSE treatment

I am completely worn out and down by this endless, endless struggle with the HSE.  i consider it demeaning, degrading amounting to torture and inhumane treatment.
i want to talk on one issue which demonstrates a complete lack of care and its impact on me and also that of my twin sister.
HAVING A GOOD MATTRESS FOR SEVERE, CHRONIC, PAINFUL AND DEGENERATIVE PROCESS IS 'VITAL' TO GET THE BEST QUALITY OF SLEEP POSSIBLE.

my twin and i have fought to have this one basic issue addressed.
despite representations on our behalf, the HSE consistently counter this with 'they receive a professional skilled service.'

we remain without a mattress that suits the level of pain, the level of disease and the level of dystonia, muscle wasting and all manner of symptoms we have to endure.
but endurance now has been for far too long on awful surfaces to sleep on.

consistently throwing a few inch thick 'toppers' for bedridden older people who do not actually have our condition is wrong.
they are insufficient to meet the chronic nee we have.
we then 'trialled' a mattress from a retailer, and have had this for months on end, its not working.
the hse then gave me a real mattress, but again its not working for me.
they add bits to this, they add toppers, and covers but its not helping me as its too harsh for my body and i have told them this over and over and over again.

i research all the time.  i consistently see that through many retailers in Ireland the HSE do provide quality mattresses for very sick people, so why are they giving us hell for year after year and providing basic items inconsistent to the degree of night time distress of pain, discomfort and heat intolerance and unbearable sleeping surfaces.
recently i was in hospital and very ill indeed and the hospital actually hired in a mattess, it was a Hills Rom Primo, it was divine, with only tiny issues to address i contacted the company on my release.
they suggested the Duo2 as i explained the complex issues of my twin sister and myself.
i asked how much would it be to hire these and trial, i am at my wits end.
i cannot afford it.
i have put it to the HSE begging to allow us trial and see if these are suitable and put closure of chaos of beds issues now going on for over six years.
the agony of procrastination and many sleepless nights, does now amount to torture and neglect on a grand scale.
the company reassured me the HSE has supported severely ill patients with these mattresses, yet they consistently messing with us.
only yesterday a guy came out with a HSE official and tinkered further with the bed from hell, and started to go into all sorts of technical 'pumping' up for the HSE official as only those flogging their wears will do.

i stood by knowing and being ignored, his efforts have been in vain for me and the bed mattress is goddam awful.

what am i doing at present?
i am like a bed vagrant, switching from this awful shite mattress to the sofa, which is softer and cooler or to going to twin and attempting the spare room one which is bigger and i can stretch out dystonic posturing as my bed is tiny and cramped.

i am climbing the walls over all of this.
the toppers and mattresses are banking up in my spare room, disgarded as useless for me and i have asked the HSE to remove them.

How long can we ignore pain and sleepless nights which is vital for the optimum health of very sick people?

Do people not consider six years too long?
if i could, i would get the Duo2 tomorrow and be shut of the awfulness of this agonising begging and begging and profound need to have a sleepful sleep rather than dreading the time i have to lie on a surface that within half an hour has me sweating in extreme distress and discomfort, before i drag all the bed clothes to the sitting room and decide to give up or get into the van and arrive at twins to go to her back room.

its insane, its torture, its inhumane, its neglect on a grand scale.
please share this blog.
i am going through hell and i want this to end
yes, i have asked the HSE to trial the Duo2.
what more can i do.
i now know they have provided these for other chronic sick individuals, but the knives are out for the kennedy twins.
help us if you can.
wits end i am

a true understanding of terms such as 'vulnerability' and 'abuse' and 'context'

Understanding the human being as a entity, seems to have died and our humanity has become a robotic sense that we exist but yet we no longer are placed as individuals.  We no longer hold levels of spirit and soul, compassion, empathy, sorrow, hurt, joy and comittement.
when people are vulnerable, we all recognise this word, but hardly absorb it or its real definition and the consequences on both society and the individual.

it is not enough to know the lexicon of words used.

Vulnerable, isn't the same as 'weak' or 'weaker' or 'less important' or 'needy' or even that they/we are without capacity.

Vulnerable is a kind word, for placing a person who is either a hurt individual, a person unable to withstand the slings and arrows those with more shaped brains and stronger psyche can withstand.  Vulnerable people can be a creation or product of an abusive society, family dynamic or sexual abuse, or being born different through no fault of their/our own.   They also demand attention.  Attention means too, that vulnerable people are not 'set apart' because they are such, but need just further attention and awareness in order to slot into the greater scheme of humanity.
Vulnerable people are not devoid of soul, spirit, intelligence, humanity nor are they useless, ineffective or uncaring or a piece of humanity that have no feeling as if some intrinsic part of them doesn't even exist, so if it doesn't exist, therefore 'how would vulnerable people know they are being abused!'

there are many classes of vulnerable people so the broad term of 'vulnerable' can apply to a learning disabled child or adult, a person who has had a protracted period of trauma which they cannot ever hope to recover from, or they present as someone 'different' or 'with difference'  that set them apart and can face a life of the inhumane bullying done to them by this very difference being either obvious or oblique.
so in real terms, its not simplistic to use the term at all.

Doctors can and are in some cases vulnerable.  Many highly placed individuals in society present on the autism spectrum for instance, their intellect has therefore offered them their value and place in a sophisticated strata of society and humanity, but it can never remove us or them from the ideas around what we consider a vulnerability within, that has to be cushioned against abuse, because brilliant people may not be that good at dealing with a trashing.

Abuse now is another word.  this particular one is rather loosely and over-used.
over use of the words, abuse, or abusive or verbally abusive, is emotive and destructive.
for the line blurs and it loses 'weight' in translation.
when Abuse occurs, its profoundly damaging, its not a slight on character or emotion, its very damaging.

it is wrong to use this term on the same continuim  or degree and place for instance a person who has been traumatised through rape or sexual abuse and who may scream blue murder if further threatened by society in a different context that reminds them of their initial abuse, or places them terrified of further abuse.
screaming and crying from a traumatised once abused individual, can be used against them.

they are pronounced 'verbally abusive' and phones are slammed down.
Guards can be called if a vulnerable traumatised woman who is verbally 'abusive' present in such a distressed state to 'State caring' (HSE) individuals, but then how do you determine this level of stress and vulnerability and the effects on that persons psyche so such lose using of words such as 'verbally abusive/aggressive, can be humanely applied within context of that persons past, or present or communication deficits, lack of sophistication or communications through difference?

it takes 'sophistication' and it also takes 'intelligence'  and 'up-skilling' within a work force who has at its heart a modis operande to work with the sick, vulnerable, needy and frail.

it is NEVER up to a vulnerable, traumatised individual with difference to attempt to smooth passages of work life ease for a professional!

Professionals chose their career path, and although no person should be having a hard time in the work place, it is up to  the professional at all times to work professionally with compassion and understanding.

to understand 'vulnerability,'  'abuse', 'communication skills' and 'difference' means very  much understanding these words, past the definitions, because the words themselves are all understood, but can be translated either intentionally, or with intentional harmful effect on an individual.
understanding of these words means true understanding so that if a person is any such thing, you have to see them in context and this context is like a large pillar of balanced bricks, placed one on top of the other, if you pull one out of place, the whole shabuddle falls down into pieces on the floor no longer even recognisable as a strong pillar before your eyes.
taking the bricks away, a type of coping strength of bricks upon bricks, is tearing a person down, brick by brick, until a quivering mass on the floor of the professional's society's remit of care.

to damage in such a profound way is unprofessional and abusive and its never up to the abused to attempt 'repair of process' when the damage has been done.

Repairing takes effort and committment.

This blog has been written in context.

Recently viewing HSE FOI files, i see that a certain social worker has written a dated list of 'verbally agressive/incidents' in tabulated format, one after the other on sheets of paper.

I am that verbally agressive, abusive individual! I claim that a rocky start in adult live which included clerical sexual abuse, and rape, who has known frontal lobe brain damage and lesions on the brain like dandruff, plus is severely/profoundly deafened, had a very rough start to trying to attempt fit in in a modern society which had already huge expectations.
i also was on the autism spectrum, and more of this anon.
but to see on files tabulation without any context of history, degree of trauma, effects of trauma and abuse is very very wrong, unprofessional, and denies me, a known vulnerable individual, any right to say it otherwise, for the professional has 'spoken.'

Learning about the dynamic of trauma and stress on communication is also a skill and i do believe the professionals we are producing and who hang on in jobs within the HSE of professional clout and with remit over vulnerable people who castigate their client base and begin either witch hunts or labels or defamation need to be routed out and re-deployed away from their clients as they are damaging professionals, and ought not to be within sniffing distance of people who are sensitive or traumatised.
professionals who overload an individual and add to trauma are perpertuating abuse, and committing further more damaging abuse on that person.

Most within the HSE know of my past, that of clerical abuse, deafness, brain damage, and autism.
I am still being abusively treated with no let up at all.
the 'groupthink' has now become an 'embedded' acceptable practise against an individual, who has no rights of reply and a person who consistently tries to 'repair' her reputation, through her wish to educate her abusers of state of her starting point.
THEY know my physical and emotional psyche and damage of the past, but yet, all the while, the disconnect of 'context' with 'labelling' is massive, so great,  its an agreed pathway for professionals.

they actively seek out this disconnect and refuse to connect the dots of data from past to present to promote an image/dynamic of prejudice against me, a person who can never repair a professional stance for the client has no real strength against 'groupthink.'
If its that strong not even the strongest individual would have enough strength to fight an abusive force such as, within the HSE our health caring institution.

how abusive is it?
it is very abusive.
the very fact that a social worker can actually go through files and rewrite ONLY the times Ann screamed and shouted in dire distress and put on the top of the page 'incidences of verbal abuse/agression' and no more is very dangerous indeed.

such things too as denial of past, of diagnosis etc is rife.
we look at the diagnosis of being on the autism spectrum, a late enough diagnosis but one made all the same.
the files show a complete and utter shambles of inability to grasp this nettle.

From callous 'throw-away-remarks' after meeting me for five or ten minutes 'she doesn't have Asperger' claimed by a person who has some training in psychological dynamics.  
Other statements on file are direct, 'she has been diagnosed with Asperger'
she went to see Dr .....blank blank and blankedy blank....and she 'claims that Dr. blank states she does fit the criteria for having an autism spectrum disorder.' (name of this doctor has been erased, which is beyond my comprehension)
we then have, 'can we have Dr. So-and-So look at this report to see if he can verify if it is correct?'
Well, the Dr. in question never assessed me and claims 'it doesn't look much of a report and we do not know if the person, Dr. blank has the skills to diagnose this condition.'
so we then have a HSE official inform the HSE to ignore it altogether.

this is wonderfully professional.

the Dr. Blank in question is very much a Dr KNOW, and is considered as one of the tops in her field and recognised as such.

to be debating as clustered non skilled individuals, a paper sheet of investigation that took more in than a brief summary of final report, is bizarre.  it is an nervousness around 'skills.'

to tell the HSE to 'forget it mate on this one!' is utterly bizarre in extreme.

the diagnosis was made through the proper sophisticated known skill of a doctor with a high speciality remit to make such a diagnosis, for unskilled members of the HSE to huddle around a piece of paper and finally ignore it, is bizarre, in so far as the doctor of psychiatry didn't seem to even know the investigator, another bizarre part of all of this.

Can psychiatrists as a group, know the skills of other professionals, if they do not know this client and never assessed her, but yet deny that of another professional who did?

what i am getting here in this blog, is 'the irish way' of redefining the object.
redefining to conform to their own context which is exceedingly limited, is dangerous.
redefining out of context of any sophistication is dangerous.
labelling out of context is extremely dangerous.
tracking through the system, that is from local area to general managers a dynamic of redefinition without professional skills is called 'groupthink' and allowing a pervasive, massive injustice to prevail and tarnish an individual to such an extent as to ruin her life entirely is called in my mind, not only an evil, because its inexcusable.
we are talking about professionals we entrust to care for the weakest in society.

we never expect them to twart, tar or misrepresent the truth of an individual, nor do we expect them to brandish lists around, from one discipline to another about a single individual with one intent.
To destroy.  To destroy good character and personality to their own end, not for any real professional skilled analysis, but to misrepresent in a crass manner and disallow the voice of intelligent representation of individuals, namely myself.   I claim to own this intelligence, enough to represent my own psyche and character, i have always admitted and can show qualified clarity around my own history, dynamic, cause and effect and trauma and stress and communication and deafness.

to date, the lists endure, the assassination has been done, the bricks of strength that allow this human being to be part of society are being slowly dismantled by an institution i call corrupt of moral justice and intellect, which cannot now define the difference between a truth and a lie, a right from wrong and admit mistakes and to have the ability to move on once doing so and try reframe an individual in a far more correct way.

consistently they wish the reframing to be done by the abused person, not them, who have been so abusive.
moulding me into submissive compliance and to submit myself to more of the same, is an evil in itself.
i hold massive truths about myself, a believe in my integrity as a human being is strong, my ability to not be able to lie is actually for me, counter productive, but i am unable to lie.
to be able to say it from the hip as truth unwashed down, is a disconcerting confrontation with those who have a subtle agenda and are unused to clearly saying it as it is.

i present as a 'problem'  i SEE too much of a crooked dynamic, but i cannot mould my ability to be blunt to being that of skilled diplomat and no matter how hard they try to make me into someone i am not, what they see, they will get.

but what they chose to extract from that without context, then they are presenting with the PROBLEM and how they project that problem onto their client is devious, mischievous and very destructive, but NOT to the Organisation.
Only to their clients.

they have squarely now redefined me and are incapable of reconstruction or plastic surgery.
they are incapable of meeting a wonderful individual, who they prefer to redefine and call the guards, rather than face the truth of their dynamic and accept the responsibility.  Mishandling vulnerability and cause and effect, is unprofessional, and a lot need retraining to regain skills lost in the nappy stages.

i rest my case, i will hold true to my personal integrity but the damage has been immense of my psyche, my ability to trust the HSE in any shape or form.

it isn't up to me to build a relationship from rubble of war, its up to the HSE to build my pillar of strength, put back them bricks that held me firm, and start again at seeing me as i always was, not what they wish to define me as.