Monday, January 14, 2019

HSE - further questions on my medical care need answering

Who wants to go on Facebook and Twitter and splatter their details on social media?


The worst year in over ten.  The suffering has been extreme for twin and myself.
I ask 'Santa' that if we could, would he allow me us 'be free.'
Allow a quality of life befitting those with chronic disease.
That I have my medical needs met in full.
I have access to therapies recommended
I have access to expertise, which isn't here.
Ageism is against the constitution where all are equal in law and under the constitution
Who wants to do this at the age of 66yrs?

If you try and mend a broken care system for very sick people behind closed doors and it fails where do you go next in a country like Ireland?

Three years of mediation has produced incredibly little.
this is my nudge to the HEALTH CARE SYSTEM, with special nudge to my local representative TD and Minister for Health Simon Harris.

I believe with 'good will', with a great dollop of maturity, drive, sensible decision making, my life could be a thousand times better and my quality of life uplifted - BY THEM, rather than be placed on the bottom rung of the population for quality of life.

It isn't an accident I am suffering PTSD at a severe level with one of the lowest quality of life within the population - as neuro-psychologically tested by a specialist in the field.

This isn't a massive, complex problem here.
But questions remain and so I place them down to study,  for your consideration and help us twins transcend.

My sister and I are 'rare disease' cases.


  • Why did a CEO claim that 'did you know that the Irish doctors have a different idea of how to care for you to that of the UK doctors?'
  • (I certainly did)!
  • Why was every single MEDICAL recommendation since 2005 never followed through?
  • Why would the HSE Healthcare funder enable two sisters travel out of the country under the E112 agreement only for recommendations made during the 'out' to expertise, never implemented on our return?
  • Why has 'ongoing physiotherapy' never been supplied in any shape or form other than 4 sessions ever six months, the same as at the beginning of illness and now ten years on?
  • Why do the HSE ask of me 'what do they mean, 'ongoing?'
  • Is this not self explanatory?
  • Why has the HSE never found me a Hydro-pool for therapy recommended by many Irish and UK consultants that I avail of hydrotherapy, ongoing to maintain my body - again ten years waiting.
  • Why has the Irish state never really bothered about getting me a diagnosis for the complex condition I am suffering from which at present is unknown to my sister and myself?
  • How many can go through life knowing they are declining without a disease name, even if no cure?
  • Why has the Irish consultant base never  followed the recommendations that our disease process was most likely a primary muscle disease and further tests need to be done - (2016 and still not instigated).
  • Why have I been left to die alone with no real considerations on my care.
  • Why has the HSE not provided a key worker, better social care support and why do I struggle so badly even with the basic tasks of daily living?
  • Why can an important investigation be found in our favour and upheld and the HSE successfully drag this out for well over three years, with a lot of denigration, accusation, slur and no real meat or substance presented on the table.
Can I please beg for the help I need in 2019?
Will doing so deliver more bad practises and denigration?
The needs, the care, the diagnosis and the maintenance therapies, are NOT overly weighty.
They require planning and operational management.
This is not a complex case - in deed its incredibly standard.

I remind the HSE I am not bed-ridden, I am not peg-fed, I am not needing extensive body management or handling.
I am very sick with a complex disease with many facets that do need oversight, but with a good manager, good will, ability to deliver and a good heart and sensible management skills, this can all be delivered swiftly and should not take ten years to sort, and allow to fester.

There are far too many GOOD individuals within the HSE so to me I cannot fathom this morass of a mess.

Sunday, January 13, 2019

HSE deny me access to information on my own files

It is very tough becoming ill.

It is even tougher losing the community you loved and served for decades.

It's grossly tough when you knew you had wonderful supporters in consultants and clinicians who gave their advice on what my housing needs were and what would suit me best when I was a very sick older woman with complex needs and difficulties and more and more using mobility aids.

The toughest about all of this is the fact I was rehoused but so badly I do need answers from the people I had trusted - who will never get my trust back in any shape or form.

I have been very shabbily treated.

Working in an Inter-Agency fashion, the County Council and the HSE were discussing my housing in depth for months.
Sometimes I was present as was my identical twin sister.

All references were given in by myself and some even directly sent by consultants, to the HSE and to the Council, good recommendations, accurate recommendations of my needs, my ways of living, how best I could be served and how I needed to be embedded in the community I loved and did so well in.

Questions have to be asked why major consultants professional opinions held no weight and I was shoved into a tiny backwater of prodominantly men who drank heavily and the HSE claim they never got to hear of it all!

I cannot believe this.

My question being, too,  after being shot at in this new enclave I have this to say:


  • Why did the Healthcare service leave a very sick person in a dangerous housing situation?
  • What did the HSE do with all the letters/reports/advice/ recommendations made to them and the council, because they are not on the  patient's community file.  Where are they?
  • Why are pages and pages and pages redacted from my view when I asked under FOI to receive community files.
  • Why did the HSE close the file leaving me stuck in an alcholic enclave of men, alone, afraid and terrorised.
  • How could they do it when it is mentioned at a team meeting I was physically and psychologically declining in the social housing unit?
  • How could they do this and leave a sick person to the mercy of the men and walk away in the other direction, knowing I had made two suicide attempts there?
  • Where is the file of the Director of Public Health on this case.   He was a Director of Public Health of the HSE and no file should be erased during the lifetime of the living patient.
  • Why do they refuse to speak of this time, allow me see the paperwork and claim files do not exist when one or two pages can be gleaned on the files I already have.
  • Why did one consultant who made recommendations who now works for the HSE redact her recommendations to the council from my files after I left as a patient between the time she gave in the recommendations and sometimes after I left her.   I was a patient of hers.  these files are legal documents and are not allowed be tampered with.  They are now not on file in recent FOI requests.
  • Files are legal documents, you are not allowed tamper with them.  Redactions of major recommendations for the rehousing of seriously ill patients, whom you advocate for a certain living arrangement to be missing off the hospital file is a serious offence in my eyes.
to Me, the HSE has many questions to answer.

I have suffered badly having such a health caring organisation doing any community work for me.
I have been left penniless, out of my county I yearn to return to, I have no means to make any decision, no means to attempt to get home.
the consultants all made sound judgements, but these get tossed to the winds.
why?
This is our healthcare service.
this is the only one protecting those who are sick.
did I feel protected when they walked away after I was shot at and attempted suicide in a situation where I was way out of my depth and which was dangerously violent.

Friday, January 11, 2019

38,2000 have read my blogs since I began - here is another

I want to go home
2019. 
Happy New Year

The eve of a bright new dawn I was asked  would I like a hint as to what day it was to be the following day!

I kid you not.

Someone had had a 'senior' moment and thought the best way I was to be cared for in the Irish context during a daft period of Christmas/New Year was in a 'state of the art' nursing home for the elderly.

"Happy new year" I responded directly to this hint.

24hrs later I left or fled, take your pick!

I wrote an angered missive to the HSE, yet in retrospect they did me a service - proving a direction I will never take and I also said angrily,  I would rather shoot myself between the eyes.

It's been a grinding decade and more. So much promise when my twin returned to Ireland after 47yrs away.  So much joy anticipated, so much living to be lived and grasped on the cusp of the impossible - disability in Ireland.

I wanted it all, the fun, the happiness, my life to ever begin and I felt all my tomorrows had come together the day my twin returned to her homeland.

I was SO wrong.
The break up of everything, my personal home, my personal community, my way of living, my strategies and coping skills obliterated because the HSE determined I could do better, that is - have a better quality of life if I asked for a safer home to live in.  (they feared fire in an upstairs social housing unit).

I wasn't for turning.

-  but I turned - through heavy persuasion.

Again, the HSE had one of their first senior moment when they didn't seem to be aware I had landed like a lamb to the slaughter in a dangerous situation far greater than fire.

Guns.
Drunks.
Danger
Isolation
Fear
Entrapment
This wasn't my idea of a better quality of Life


I was without the ability to even open a wheelchair inside to full width to sit on or do anywhere there, no wifi, no tv no nada.

Even the ambulance couldn't find me.

So embedded, left and finally shot at, I fled.
Though very sick, I have always explained my needs - so have consultants, far too many - so too have advocates - far too many.
now penniless, the HSE followed, and words from the HSE followed and to the present day words spit out repeatedly against the all the findings of the "Brophy report" they do exactly what he castigated them for doing in making 'wild sweeping statements.'   My life is hell and burdensome.

There is no attempt to improve it, though I fight on, as we all do and must.
There has been the 'talk' and the 'ponderous,'  words such as 'complex case.'  
All serious in this serious complex case of ours, I think is simple from this side of the fence, very simple.

I am not being peg fed, I am not being spoon fed, I am not been lifted during the night, man handled in having to need washing, dressing, turning, nothing like that.

I simply am posing problems they seem unable to solve or unwilling to.  I cannot determine which - yet.  Even after ten and more years.

I am in hell.
That is all I know and I know my age (66yrs) and I know the year (Bravo, Ann)!

I want 2019 finally to end the hell and I snitch a bit of happiness back home where I belong.
The duty of care was to follow at all times directions made by medical personnel who named my living abilities, disabilities and needs - all ignored the first time round and still being ignored the twetieth time over and more besides.

I will give them a chance to shine, I think they would like that.   They would have to want to.  I cannot do that for them.
Its not impossible.  We are not sorting out the complexities of the USA, for instance.

There are many good people working within the ranks of the HSE.
So why can they not sort two sisters 'OUT?'

The battle now for basic medical care and a diagnosis, treatment,  therapies and social care has been pitched for too long.

I was left during 2018 to help in the home equal to that I was receiving in 2005 when first ill, and some parts of 2018 saw less and yet I decline by the day.

Home is where I want to be and where the 'WHO' talk of as being a place a person is familiar and comfortable in, within her own kind and what she is used to.

2014- We are sick here in Queens UK and we are sicker to day - give us the care we deserve
I need care, a European policy and directive on both chronic care, neurological care, and rare diseases care has been embraced by Ireland, but the shining has yet to come as in 'C'mon, HSE shine on these policies, and shine them on my horizon please.'

Shine through on paper in all fields and disciplines is no good, the books are closed and fail to reveal the light of it all.

This isnt what I had planned for my life as I lay in a UK hospital bed and returned to Ireland to - Nothing.
Shine where it needs to, on the citizens of the state who beg for the help.

I beg my life will change this year before someone or other is standing over my corpse.
(an event I envisaged towards the end of 2018 lying on a trolley in A'E with chest pains for over an hour without even a name tag.   Lying there thinking that next time they saw me could be in the hospital bushes having made the grand escape.  

Luckily I bypassed the bushes, made the escape and asked them 24 hours later - "did you miss me?)"

Naw not at all, doesnt matter if I had my own senior moment and a fit in the grounds ending pitched headlong into their bushes, aged 65yrs, a senior.  (it wouldn't look good for the doctor stake holder hospital that).  Yet they didn't care a toss, and didn't miss me either.

Please get me home.
Please get me a diagnosis.
Please get me treatment and care.

Bring on the sunshine, kindness and care.
Out black spot with the constant abuse and derogatory remarks and the prejudice against me.
It had always been YOUR shame, the way you treated the Kennedy Sisters, always.
It's a big black spot of the state on fragile lives, ending their lives in such trauma.

It's a crime.
its their crime against two sixty six year olds.
I hope they shine.

Surely to God someone in the organisation is capable of that?
I may be wrong, I may be wrong, I may be very wrong.

Truth is, (do they like the truth? NO,) they have destroyed me, my life, my hopes and taken away the best part of ten and more years, the lot of them - to date.

 I want to go home....I want to go home...I want to go home....HELP me achieve this in 


2019




bring back this van to pick up my already packed boxes in prep for getting back to where I belong...








Friday, September 7, 2018

suffering and trauma continues unabated

The launch of "Living well in Wicklow" 2013 by
TD Mr Simon Harris, now our Minister for Health.  Getting him to discuss health with his nice neighbours the twins is impossible.
That is my twin sister, now a shadow of her former self but eager beaver once to make a difference in our new county where the minister for health hails from. 
it is stormy here.
there is nothing 'normal' about my life anymore. 
'she has an expressive smile'
(so said a cynic of a consultant)
me as the flower girl!  i do smile, it's a nice one, its the body that is fucked doctor

i do not speak about having a disability or being a very ill person or being a rare diseases patient in a small country.

i am talking about the impossible task of living a normal life or even remotely akin to normal as i struggle against the odds to get what we call the recognised 'fundamental rights' which we uphold here, as europeans.

i struggle to get the acknowledged pathways of care for 'chronic diseases', (yes, we have a plan in Ireland for that), neurological care and pathways (yes, we have a plan for that too here) and 'Rare diseases plan'  (Yes, this was launched by the then minister for Health Dr. Leo Vladakar), who is now our Taoiseach, head of government and country parliment.

My local TD and representative of the citizens of this town and county is a neighbour, is the Minister for Health, i voted for him.

the Department of Health which he is head of claims that the Department of Health has nothing to do with heath and i am to contact the Health Service Exec.

believe me i find this strange - the World Health Organisation claims that the Healthcare system in Ireland is run by the Department of Health, and if you look at some of our wonderful graphs and pictograms, there is a pyramid of tiers of importants and structure within our healthcare system.  Who is at the top, like the star on the top of the spikey christmas tree?  The Minister for Health, of the Department of Health who claim to me a citizen, they have nothing to do with Health.

that to me is very spikey.

an update will find that i now am seriously ill, with a progressive neurodegenerative disease which is progressive and includes myopathy, complex autoimmune diseases, dystonia/parkinsonism and severe deafness with congenital rubella syndrome (not considered to be the cause of the rest of my medical mess of a body of mine.

i have had this now a long time, and the fight began then, it continues and very little achieved.

lets look at where we are at.
there were needs to be fulfilled by the healthcare system as top of the clinical medical teams are consultant medical doctors. 
we do not have any centres of excellence for any known group of diseases, in ireland.  we have none that fit the criteria set by the European networks for centres of excellence.

we have no real expertise in anything but we do have some excellent doctors here, just lack a cohesive plan of expertise for multidisciplinary care for very specific and difficult conditions.

but when we are sent out of the country to centres of excellence, where actually you can get no better opinions, reviews and medical advice, sent out for the advice, the reviews and considerations, what comes back to the country is ignored.

why send us you may ask if it is ignored.
i ask.
i wont find answers.
i will get one from a CEO "did you realise that the Irish doctors have a different take on how to care for you to the UK doctors?"

Yes, i reply i do its called "go home and die!'

i have rights to medical care under the european plan for care and i have rights to use even centres of excellences throughout the union.
but i am not being allowed use the unions policy on cross border care and use expertise when i need it badly.

the Irish state will not implement what is recommended by those who know far more than we ever will, and i will be dead before we ever have one place, hospital, unit, discipline that will be declared 'a centre of excellence' matching 'european standards to meet that criteria and designation.

with 17 separate conditions, and this is not with the neurological decline included i receive the following:

no therapies whatsoever.
hydrotherapy was first requested in 2005 - still not being offered.
neurophysiotheraphy assessment - never had it, recommended in 2015, isnt it time i had this after all this time being so sick with a progressive disease?
is it not time to do an assessment of need for this do you think?
can we vote on that?

a guided neuro-therapy programme taking into consideration the co-morbid conditions, (the consultant means here, that i tire very easily and have a metabolic disfunction that can be evaluated on a test we do not perform in Ireland at all, no one even knows what the name of the test means, and that is our consultants).

to be honest a therapy of maintenance would be better than nothing, nothing isnt therapy, and my body knows this and feels it.

i receive no real medical care, its sort of pitch in the dark and statements such as 'it is probably...'  but "Probably" is not a diagnostic term, its a vague sort of 'well, it could be or it could not be or it could be related to or it could not be.'
Do you get my drift?
it drifts onwards out to the horizon and the world is not round but flat.

chest pains in ireland doesn't look like the ambulance programmes you see on the telly in the country nearest us.
it doesnt mean you are air lifted, whizzed off to be in any intensive care or coronary heart department and instantly attended to as in life and death situation.

what happens is, you can die here because the nearest ambulance is 80miles away.
you can be put in a corridor next to - wait for it - 'the chest pain assessment unit' on a night there is no consultant on duty of any description whether it be nephrology, neurology or cardiology. nada.
he could be at the yacht club and if there is a prob.  the registrar will ring.

nope doesnt happen.
what happens, you are put in a corridor, you are not labelled as a human being with a name and left.
i was waiting for two hours before i asked a young rushed doctor when i will be seen by a doctor, 'who are you?' he asks.

good question.
a tough one too if the person who i am becames a cadavar in the state of post pasting to the next world and end in the morgue with no id, they are going to have a field day finding out who the hell was that lady on that trolley in the corridor about three rooms down to the left, right again and then left and behind a door and in front of a man and behind an old lady and opposite a sick young lady with her partner and next to the station with three nurses at it looking at screens but blocked by a wall with no window to see that the lady has had cardiac arrest and no one sees it happening and no buzz words or sounds marks the alarm that a dead is impending will all drop everything and bring the electric pads just in case to blast the chest of her before she is a nameless blob in the morgue.
we cannot afford to lose staff in detection work.
what does this patient do?
i walk, still with the chest pains.

and it takes me a further hour and a half to get out of the hospital.
i walk from A'e pass what is a war zone of bodies absolutely everywhere, no consultant but many very young registrars or even students drafted in to fill gaps in the missing expertise, of which we have little here.
i walk with my blankie, they are now not providing pillows and blankies so i come prepared to my hospitals with a blankie at least.
i walk and no one batts an eye lid, i just walk past the war, and i move into the next, thats the war zone ready to implode in the waiting room which is filled to the gills again of the sick and ill and battered and cut and split and bleeding.
out the door i go, walk around the building in the dark and try find a phone to get a taxi.

this is a woman who has a muscle wasting disease, no wheelchair (ambulances here wont take your wheelchair into the hospital with you), two sticks and a blankie walking the dark alleyways of an Irish hospital seeking the escape route plan.

gp's saying 'did they not hook you up to a moniter?' mystified, but in reality we all know our A'E's which now are called ED as if we are one of the more sophisticated kinds.

we are crashing the parties of the real ED's as seen on telly calling ours that is a stretch too far.

so i am still here, still no medical care, still cannot get out to centres of excellence, still cannot fecking move for care.

still no bed.
still no wheelchair review to make it more comfy for my battle riddled back in a bucket, sophisticated yes, but not person centred as it stands.
no therapies which were recommended in 2005, 2009, 2010, 13, 14, 15, 16 and 18 i kid you not, ongoing physiotherapy is met with:
"what do they mean by 'ongoing?"
that is our HSE exec, and professional asking me the lingo definitions here.
well i ask my facebook page and get versions from the US of A and the UK and further afield and the Oxford dictionary is at everyones disposal and so too is any google app as anything from toenails to nails to bad teeth and coronary heart disease is now cured through google mostly in ireland, for you cant get the real mccoy here.
i use it all the time to bring me knowledge cos i cannot get it in a human being here.

so progress is in my self invented eye-medicine, that is i-medicine, in wiki style.
i am hating all this.


its taking its toll on my health and sanity and terrifies the flipping life out of me.
meanwhile i am taking the odd photograph which are turning out well indeed.

but apart from that, life isnt living, its barely existing and arguing with the HSE is not a past time, a hobby or an education, its a disease and a profession at this stage.

thats progress report. 

Saturday, July 14, 2018

Neurology - medicine - Autism - THE LOT


BORN EQUAL ACCORDING TO THE CONSTITUTION

I am BACK!

writing blogs were the last thing on my mind in recent months.
BEFORE 'ILLNESS' I WORKED AS AN EQUAL CITIZEN, PAID THE SAME WAGE AS EQUAL FOR A JOB WELL DONE.

I COULD CREATE EQUALLY WITH THE MOST CREATIVE.  I PAID RENT AS EQUAL TO OTHER ARTISTS AND I HAD A QUALITY OF LIFE EQUAL TO ALL. 
THIS IS MY STUDIO I LOVED BEFORE I BECAME ILL.

I EQUALLY HELD EXHIBITIONS AND SOLD WELL.
THE ONLY INEQUALITY DUE TO 'DIFFERENCE' BEING, I WAS ISOLATED, LONELY AND HAD ASPERGER SYNDROME.  IT DID NOT PREVENT EQUALITY IN CREATIVITY AND ABILITY.

SHY AND RETIRING I DID NOT 'COURT' AN AUDIENCE AND PETRIFIED IN THIS SITUATION.
dealing with healthcare consumed me to such a degree I really felt as if I was drowning.
I came to the veritable 'full stop.'

Breaking a wrist did not help.
Doing my back in compounded my sense of despair.
Fighting a large organisation for basic medical and auxilliary care and supports had now become a 24/7 nightmare and a hell on earth.

My life as it once was had passed by ten full years - I want it back - I still want it back.

NOTHING PREPARED ME FOR THE MEDICAL DISREGARD.  I BECAME ILL AND SENT HOME - LEAVING ME LIKE THIS FOR TWO YEARS IS NEGLECT.  I MANAGED TO GET TO UK AND DIAGNOSED FIRST WITH SJOGRENS SYNDROME AND MUSCLE MYOPATHY

VERY SICK - ABANDONED BY ALL
AN IMAGE SNAPPED BEFORE CROHNS SURGERY IN 2002, VISIBLE SLASH MARKS ARE EVIDENT.  THIS DID NOT HELP IN MY PHYSICAL HEALTHCARE AVAILABILITY.  I DID OVERCOME THIS, BUT THE RIGHTS OF EQUAL TREATMENT NEVER MATCHED MY ABILITY TO BE EQUAL.

CIRCA 2009 I WAS VISIBLY SICK.   STUDIO NOW GONE - THERE WAS NO MEDICAL CARE AND NO UNDERSTANDING

THE HSE DECLARED MY SOCIAL HOUSING UNIT 'A FIRE HAZARD' AND SUGGESTED I ASK FOR REHOUSING - EVENTUALLY PERSUADED NOTHING PREPARED ME FOR FALL OUT.

RESULT - MEDICAL MISMANAGEMENT AND HSE DYSFUNCTION - RESULT - FALLOUT ON A MAJOR LASTING SCALE.

YOU SHOULD NEVER PUT SICK AND VULNERABLE PEOPLE IN VIOLENT SITUATIONS WITH ALCOHOLICS WHERE SHE WAS IN DANGER

HOW THEY TREATED ME PRODUCED THIS IMAGE.
HOW I REACTED IN STRESS DEFINED ME TO THEM IN TERMS I NEVER IMAGINED

TEAM MEETING - HSE VERY AWARE OF HOUSING DANGERS - BUT IN THE END THEY CLOSED THIS FILE ON A VERY SICK INDIVIDUAL.

A PICTURE PAINTS A THOUSAND WORDS.  WE SOLD OUR ONLY ASSET, TWIN WITH PARKINSONS DISEASE SLEPT ON MY TINY SOFA FOR EIGHT MONTHS - WE FLED THE COUNTY DUE TO FINANCIAL CONSTRAINTS.  THE HSE ONCE SEEKING QUALITY OF LIFE FOR ME ABANDONED ME.

I THINK IMAGERY SAYS IT ALL.
THE SUFFERING THAT ENSUED.
I dream of the time I can paint and write.
That tapping out distress, tapping out begging emails and letters ceases and that harmony will prevail.  The care I receive will end with quality input from medicine and quality output at what i am best with - my creativity.

Lets look at where I am at.

Regarding engaging with the HSE, its as dreadful as ever.
To me thoughts around
'Who do they think i am,' 
springs to mind as i have spent long hours looking through community healthcare files.

WHO THEY THINK YOU ARE is actually more important to them than:


  • WHAT IS WRONG WITH HER
  • WHAT IS HER DISEASE PROCESS
  • HOW DO WE ACCOMMODATE THIS
  • HOW DO WE STREAMLINE HER CARE
  • HOW DO WE 'ENABLE' RATHER THAN DISABLE.
  • HOW CAN WE RELEASE HER TO BE AN ACTIVE CITIZEN AGAIN
  • HOW CAN WE SUPPORT HER IN HER END YEARS.


but actually the predominant features of the Healthcare system as I see it today is far from lived reality.

It severely rebukes the disabled and chronic sick individual.

Healthcare in Ireland is based primarily on loving, liking and behaving.

You actually have to be a certain person.
You cannot be anything other than 'perfect'.

the model for a viable patient and disabled person runs something like this:


  • ENGAGING
  • COMPLIANT
  • WILLING
  • NON CONFRONTATIVE
  • LIKEABLE
  • AGREEABLE
  • NON DEFENSIVE.
  • NON ARGUMENTATIVE
  • A PERSON WHO NEVER OBJECTS, or SAYS 'NO,' 

BUT MOST IMPORTANTLY IT IS THE PERSON THAT NEVER:

  • SCREAMS
  • SHOUTSUSES NASTY WORDS
  • NEGATIVE
  • DEPRESSED
  • DISTRESSED
  • CRYING
  • BAWLING
  • YOWLING


Personality presentation COUNTS.
It is fine for many if the road is less hard and easily travelled.

It is terrible if the road was never easy, if it was fraught with lifelong difficulties in general communication, and integration. Ones ability and issues around stress in engagement, skilled communication compromised over that of a person who was always able to be a party animal and had many friends.

These types usually find a middle ground to negotiate difficult times.

So here is the personality the HSE are failing to understand within this client.
It is actually important to know!

For starters - no where in the files has it been noted that i have had frontal lobe brain damage from a young age.
This therefore is a profound medical omission.  it distorts the medical definitions and overview of this patient and client

It has not been noted that i have brain lesions too from birth issues around being born with Congenital Rubella Syndrome.
this being omitted from medical and community files or only briefly stated without qualified explanations is medically denying a reality for this patient.  It denies the person a right to the full patient profiling.

it has never been understood that i have only 20% hearing.
Lack of medical comprehension to these things is inexcusable, modern science, understand of deafness and impact has grown in the past decade and is understood and weighted as having 5 times disabling effects than ever once considered (World Health Organisation has upgraded its disadvantage)

this is a massive deficit.
you usually do not classify in percentage terms, but its easier to understand it in those terms.

you cannot tell a person because you have great fluency, a nice accent and no issue with actual pronunciation that she is anything other than deaf.    

Deafness began around seven years of age, so i had 'understood' language until then and the decline though significant in the early years became worsened in later years with 'menieres' onset and 'mastoiditis.'

So personality is further complicated with a very late diagnosis of Asperger Syndrome, this term now has been melted into the Autism pot as part of Autism and being on the Spectrum.

but denial of both brain damage, deafness and autism is pervasive on community files.
Denying the medical evidence is medical neglect and abuse of power.  It twarts the picture. It does not represent the patient. It effectively wipes a reality of complexity, medically defined, therefore files are incomplete. 'Weight of disease/complex issues,' is not reflective for the person nor for consultant or community care professional.

It is never written down in community team notes as being 'important to note' which i think it is!

The understand of 'wholeness' of complete observation of persons with chronic illness and disability cannot be found either, within the medical field.

When clashing dynamic of how a patient 'operates' in the 'functional' way of 'communication abilities' we inevitably have a disharmony.

You are not going to ever get a patient with such complexity to match your ideal.

Society has to be observant of 'difference'
it has to adjust to facts.  HARD FACTS being, disability is what it says on the tin, it pours out with the communication skills which are appropriate to these deficits.

You cannot ever make an autistic person into a neurotypical.
You cannot put brain matter back when its atrophied.
You cannot remove brain lesions.
You cannot give renewed hearing when it has died, and is effectively - dead.

When a patient therefore becomes sick, we have disharmony and only one person suffers in this.
The patient.

People like myself and of course many others have their own ideas of how to care for any individual.
There is a golden norm we wish to aspire to and its called: 

Best clinical practise for all

I personally have my idea of how i should be cared for. I am not without intelligence and I am very practical, sensitive, and knowledgeable.
That has not been damaged by the deficits i presently have.

i believe in Morality and Ethics. 
'Difference' should not bring in its wake inferior medical care and inferior community supports.

I am now 65yrs and this too can come badly against you as you are expected to go home and die off, irregardless of how unwell or disabled you are.
Again, i cite any country as a Morally Bankrupt society if it inflicts such suffering on the most needy as care should increase not decease for our older citizens of this state.

i don't intend to allow this happen and will demand equal treatment for equal illness as the rest of the youthful citizens.

Treatment of those with 'difference' has meant an inferior care system for us.

It is blatant, obvious and painful.

It crushingly defeats the strongest of us.
It attempts to deny and anihiliate the personality of spirit, spunk, genuine good intentions and the care for the greater good of the individual.

Arguing for best practise in a badly communicated way is considered consistently as - 'she is aggressive, abusive' and a character/personality is defined from professionals meeting this as:
 'here we have a disagreeable person'.

It says nothing of how that person deals with stress.
But then if you do not put on the files medical evidence the person deals badly with stress and distress we are not heading for a winner here, ever.  
This, I consider medically screwing the evidence for the benefit of the professional rather than the patient.
  
It is medical malpractise to obliterate the diagnosis

the black and white picture is very black for the consumer in Irish Healthcare.

Try going to a consultant (alone) with a diagnosis of Autism, Severe/Profound Deafness, and issues around communication, deprivation of social inabilities due to a life of isolation when you withdrew from the world for decades.

Try carrying on an equal discourse on disease, care and diagnosis with this set of 'communication difference'.

It is impossible.

you are not meeting my sisters here.

You are meeting a 'born with disability' person with newly acquired disability and chronic diseases of considerable complexity.

Missing this point entirely because I am articulate, forthright, intelligent and speak proper, misses the deficit marks entirely.

I speak sir and equally.
I am sir, different.
You will not applaud my screaming when so distressed its unbearable.
You will not applaud my meltdowns when you rubbish my illness and presentations.
You will not applaud my loud snide remarks, abusive phrases when you have brought me to the end of my personal rope and i am beginning to loathe every fibre of your being.
Denegrating me as a person who intrinsically never wanted this discourse or disease and who is pissed to the eye balls with the reticence and the rejections and the put downs will cause a reactive response every time.  You caused it, Sir!

You will not appreciate me telling you that for too long you have insulted me, defamed me, anihilated me.
You will not appreciate it when I attempt to tell you that although I scream and shout, I would not consider myself who you have decided to label me as.

YOU decided that without my input.
YOU decided that because it is convenient.
YOU have decided that without looking at 'cause and effect.'
YOU have made this judgement without looking at well observed, tested and diagnosed issues you have failed to note on the files with medical correctness that files should be complete and give the full picture.

There is no warning that difference will present in this individual from the start.

No doctor or community care officer has ever written such words of these as part of 'history' for this patient.

This woman in senior years presents with chronic disease and with a complex neuromuscular disorder of unknown aetiology.
Her social history has been peppered with disadvantage, isolation, exclusion and sadness.
She has rarely engaged with the general community on a level expected of a citizen who is accomplished in communication.

She is intrinsically vulnerable and has experiences not many encounter on a consistent basis.  She has a history of sexual abuse, further impacting on trust levels especially with men.

This woman has an autism spectrum disorder, is severely deafened and shy and has a communication fitting her ability.

We must therefore at all times remember her lived experience we may never understand or have experienced.

Best practise demands the following dialogue:

  • She comes to me today nervous, terrified, with little trust but expects as is her right to be treated well and fairly.
  • we have a duty of care to respect her, do all we can to 'enable' her have a quality of life as all life is sacred.
  • we will endeavour to give her back her dignity and quality by enablement not denigration of body, soul and spirit.
  • we treat her with a preciousness because she is special and requires a sensitivity from us she may never be able to equally give in return.
  • we must never abandon her or make her feel pain due to her communication disabilities.
  • we must never make it worse for her than it already is.


Alas my friends they, the medical professionals and the community care teams, have made this person's life HELL ON EARTH
Labelling has been so defamous that its shocking.
Denigration is the order of the day.
Abuse, torture and neglect comes on a power that many who can fight back would have been able to stem long ago.

HOW THE CARING PROFESSIONS SEE ME
To me today as a person thus described above, my lived experience of those who should be better able to enable has been profoundly traumatising.
It has cut me down to worm status. Given me a level of despair and depression I never thought possible.
It has halted me in my tracks and stunned me as if shot with a stun gun.
i have been very heavily beaten and thrashed.
Denial of healthcare has been the result.
Many know that part of the story.
How many know why it has happened?

Ignorance.
Plainly I see this all as inability to deal with 'difference' and inability to accept that people are different.
The ability to need a person to be a certain way before you can treat them is profound here in Ireland.
It does lead for an easier life if a person is a 'yes man/woman' and pliable and grovelling and compliant.
It is not easy to meet an intelligent woman with high standards, expectancy but who has a different way of engaging in a conversation she finds almost beyond her ability.
What happens then is anger, really on both sides as one trashes a person trying to be heard on a consistent basis resulting in a person who has had enough of the abuse and lash out.
That part should make perfect sense.
You cannot have it any other way.

Anyone abused should react!

Do I respect those who abuse me?
No,  I do not.
You will never make a saint out of a person who is harmed.
You will never make me act saintly in the face of abusive practises.
You will never make me accept your perception of me and you cannot expect me to be in your terms 'normal' when its abundantly clear what we are dealing with here.

It is MY personal situation from hell.   The anihilation is real.  It happens because of the expected response from a disadvantaged person with so many health issues.  You cannot ever conceive such a heavy disease burden.

Two consultants to date has named this as it is.
one said in writing 'she carries a heavy disease burden.'
The other considered me amazing and said to me as he wheels me away from a colonoscopy room, 'you have such a lot to deal with.'

Tears dribble down from the corner of my eyes.
Will you look into my eyes and observe my distress of this 'heavy disease burden' and unrealistic expectations of the healthy and powerful over one single person who is doing her best.

The added problem is, I have now reached 65yrs of age.
I am expected now to go home and die and go home with even less service than I ever managed to garnish for myself.

YOU DEFINITELY FEEL IT!
So we have inequality here being played out on a grand scale.
I DID NOT GO THROUGH SO MUCH TO LIE DOWN AND DIE NOW.
I AM NOT GOING AWAY WITHOUT MY FIGHT TO MY LIFE, QUALITY OF LIFE AND EQUALITY OF HEALTHCARE AND SERVICES.
This person will not accept this.
I demand equality, despite all.
You are not allowed discriminate on the grounds of age.
You are not allowed discriminate on the grounds of disability.
       route it out where ever it occurs.

Ten years of denying the therapies and treatments mandated by the medical consultants who mapped a plan for me has been denied me and my identical twin sister, i hasten to say.
I have yet to have anything implemented and now aged 65 it will be harder.
I want all to understand this - I will fight on, in truth and justice.
i will face this with my inability of communication but I will intellectually be able to tell you that it is against the law to abuse your power, to defame and to cause harm.
All of which you have done to me.

it is morally and ethically wrong
but more importantly - it is acknowledged as a dynamic as being against the law.

May i ask all the community care professionals as i end this discourse -

WHERE HAVE YOU HIDDEN THE MEDICAL EVIDENCE I GAVE INTO YOU WHICH NOW SHOULD BE ON MY MEDICAL FILES, BUILDING A PICTURE TO ENABLE YOU TO CARE FOR ME AS A DIRECT RESPONSE TO THE REALITY OF DISEASE, FUNCTION AND DISABILITY -

THEY SHOULD BE ON FILE, THEY ARE NOT.
WHY?
IT IS NOT POSSIBLE TO KILL OVER A 'STRONG SPIRIT WOMAN' DESPITE HER DIFFERENCE AND INABILITY THROUGH DISABILITY, I AM INTRINSICALLY SOUND!

I DID NOT GO THROUGH SO MUCH TO LIE DOWN AND DIE NOW.
I AM NOT GOING AWAY WITHOUT MY FIGHT TO MY LIFE, QUALITY OF LIFE AND EQUALITY OF HEALTHCARE AND SERVICES.