Saturday, April 6, 2019

Recipient of HSE medical and community care and BROKEN by it.

I am broken by the engagement with the HSE, our Health caring services.


My twin, left and myself in RESPITE.  we got five days away in a lovely place.  we are assessed as and given allocated respite four times a year.  we never get this of course.  Despite being allocated as needed.
 it is badly needed right now.  (they say I can get it, if I go into an 'old people's home.  I won't as its not appropriate for me.  Rightly so, and I have no choice which to me therefore would be 'enforced'   respite against my wishes.
I was assessed and allocated hours in the home for care.
in three months I have lost 92hrs of care, the HSE claim they cannot find anyone to fill the slot the lovely PA left when she retired.

I am exhausted from this engagement which the HSE was asked to engage in, in 2015 and yet here we are in 2019 with little or nothing to show for it.  In fact its all getting decidedly worse.

I am suffering.
It's very real and we are talking about human beings in this situation, not monkeys or dogs, or cats or zoo animals but real flesh and bones - human beings.

we, as human beings have won the right to live as equal to those who are not disabled roughly this time last year with the ratification of the UNCRPD.    I have seen no change in an anxiety riddled life cursed by the dynamic of dysfunction in my small country.

we have sat at the mediation table for five years.  - this to me is a waste of my life.

Each meeting produces 'action plans' to be done.
we are talking about very little needing done.
we are talking about what ALWAYS should have been done and although agreed in principle should be done, its just not getting done.

The action plans have not translated into Action.

Anyone going to a talks table brings an agenda of issues with them.
This agenda is not on the scale of BREXIT.
Its on a minor scale in the, er, scale of things.
Its two human beings against a very large organisation which was mandated to apologise, sort the issues and 'own' their responsibility.

I woke this morning screaming just that.  I had a nightmare.

I have been sleeping with my twin sister on her put-up bed in her living room as my home has had no heating for months and I am ill and cold.
I woke at 5am screaming. I got tea and toast, and wondered if I would sneak out on my wheelchair and go home with my baby dogs.

Shouting out loud "sort these issues."  I found myself in a small room with a few individuals, all of whom I know within the HSE.  My twin was in the room, weeping in the corner.
I stood screaming at the main protagonist in the charade.  Explaining in my nightmare that I am on morphine and other pain relievers saw me wake in a sweat.

"Sort the issues,"   ringing in my ear.
"Sort the bloody issues."

I feel my life slipping away in a psychological mess and distress, a circus and extreme fatigue and suffering.

Many see it, all see it in fact.  Those who want to see it, that is.
The HSE felt very saddened at my 'impact' statement which I read out at the meeting before last.
But nothing has changed.

Sadness and expressions of it, don't change practical dilemmas.

It will not change, for instance, how individuals - identical twins are continually treated with extreme difference - even if both have the very same set of complex issues, bar one.  One has severe arthritis and needs hip and knee surgery, but this is offset by the other who had a very bad fall and banjaxed her shoulder, and a written report that I have other serious autoimmune diseases which my twin sister does not and require the help (support letter from a neurologist).

My sister and I understand the bad treatment of pitting one twin is distress against the other.
Its the worst sort of dynamic which can cause havoc in a relationship.
I watch my care decrease and hers increase for the past two years.

 I have been in disarray, carers coming in ad hoc and now dialoguing the mess I have lost 92hrs of care allocated to me through assessment of need from February to this April 5th. 

That is a lot of hours lost.
I am so exhausted I have asked if these hours lost, presumably unpaid to who was supposed to give it, is still 'banked,'  could the HSE use the monies to give me a 'Respite Grant' to go chill out and rest, something I badly need.

The Respite grant scheme has been changed.  It's only for Carers.
I can only go into a nursing home aka old people's home and watch patients with dementia holding dolls and teddy bears.

I am not the human being now that I have reached 66yrs of age.

There appears many dilemmas here in this case of identical twins.
Its not a complex case, its relatively simple.
I believe my rights in all of this have been infringed.
we have to see this as a 'human rights' issue now as the suffering has become so great and severe.
we are in an era which claims that we deserve our lives, to be as equal as many others.
I cannot see this playing out in mine.

What I see happening is I am slowly dying in front of the Health Caring Service Providers and they watch on and say 'Too Bad.'  and just hope I die soon.

I have let my local TD's and councillors know about my case.  Nothing changes.

I have informed my own representative who happens to be the present Minister for Health.  I have not felt his impact in this case at all.  He should have acted in his role at the top of the chain in our healthcare services.  Yes, the Minister for Health is the legal 'boss' of Healthcare in Ireland.  


I believe the UNCRPD is been breached on a daily basis across the country.


Tuesday, January 29, 2019

HSE meeting - a new turning point

I have had enough
Turning tables around CAN produce a 'turning point.'
Perspectives change and a new way begins which opens up new thoughts, ideas and people are seen I hope more as human beings, rather than 'done unto.'

we started the day and week with absolute dread.
This has been a fierce fight, for many basic healthcare needs to be met and more so too, perception of us as human beings who are only wishing for healthcare appropriate to the disease process.

given we still have no diagnosis any turning point is welcomed in this 'frey'

the tables in the room were turned, from a board room meeting to a class room style teacher at top and pupils watching and listening.

ALL listened!
the orchestra conductor was a seasoned consumer of the HSE care services.
Seasoned in debate
Seasoned in understanding inch by inch the methodology used.
Seasoned in the language used, against her and the absolute 'fed up with that woman' approach which creeps in when all consumers want is care, sometimes only basic but sometimes very sophisticated, e.g. diagnosis for rare diseases.

the conductor asked me to read out how I felt.
So I did:

How I feel

I wake early these days and go to bed late.
I am usually in pain, always depressed.
Dreading another day of more of the same only words will capture how I actually feel.
Helpless, hopeless, fractured and traumatised.
Suffering goes without saying.
Struggling is not my lifestyle choice, but its added to this list.
An agonising wait for the 8am postman and the jump in terror as the envelop slips through, dogs bark.
I open with sweat bristling my forehead.
Will this be a day I have to flee up to twin in collapse or crying.
HSE ‘stuff’ Doctor ‘Stuff’ yet again.

Isolated from all I had known, I am lost in hostility all around.
‘Leave grey stones’ scratched still on the van.  Where the hell have I placed myself.
Beaten and broken, I look out with empty joyless eyes.  I have long gone from loving life at all.

I attempt to live and thwarted daily.  HSE etched on all surfaces, even my brain.
My physicality deteriorating four years off seventy I just want to go home, be where I long to be and amongst safety, security, peace and calm.
I never expected this or asked for it.
I am in a hell.
I attempt to soothe some hell from my twin sister and I try to phycialy fill gaps which I know I cannot do anymore, more tears, more pain in my limbs as I know I can’t do all that is expected of me.
I want to sit on the pavement and just weep.
I beg inside for the spiralling pain to leave me, someone to save me from it and let it all go away and I get back to what I know.

I chose art for a reason, beauty, skill, aesthetic, it comes naturally that I use vision over verbal communication, I do what I do well, and I want to leave the rest.
I never used language to any great degree, I couldn’t.  I didn’t hear it enough to form good sentences, but then I heard enough to understand and others firing at me language and prejudice needs answers I couldn’t give, articulate and I was left in a heap with no skills at all, I felt beaten down to a pulp, and its ongoing and I am bereft.
This is how I feel, it isnt a one day wonder, its permanent, and its persistent, its painful.


Terror is a word I would use to describe my level of care across the board and the basic assessments and dismissal

The snot and tears ran in uncontrolled rivulets down my cheeks, my soul was bursting in grief, my heart thumping in agony and I was weeping as if it had come to this head - to them.
to ask them, to listen I could not take any more.
they listened.
the sensitive bit was the pensive responses which indicated for once - at last - I was heard.

I tried desperately to stem the stem of body fluids around my nose and eyes, with a lovely scarf I wore, wiping hopeless and more followed more, in drenches.

I do believe they felt shocked and saddened that so much was inside needing to be heard on how I felt.

its been a long time like this - ten years.
so its a lot to get out in a short two minutes.
its shocking really that any very sick chronically ill individual, sits there bearing her soul to basically strangers who hold so much weight in their capacity to give the medical and social care mandated by the state for community care.

if this does anything now to move forward a pace of care provision that is swift I would welcome it so much.

I am after all four years off 70yrs of age and ten years of stalemate is not something that I am happy about.

nothing more than bone tired
life moves on not goes backwards, those years now are lost to me and my twin sister where quality too was snuffed out in this tragic fight for the care and needs to be met.

to be met with anguish and jumpy anticipation by me on the next accusation and the next derogatory statement and the many in the past going back so long.

it has to be unpicked and examined.
because it is so endemic even doctors begin to take up this small island approach of gossip, recently hearing a consultant had investigated me, yes and found information from 2009 which is unreal.
given the state of the nation, the over worked consultants, the panic of so many people in a public healthcare system which is failing so many a consultant has that time to ring three different entities on one patient and then write humdingers to the patient says a lot to me really.

but baby steps have been made.
today my head is singing.
the menieres is bizarre, the tinnitus is a band gone wild.
the exhaustion is a dancing awfulness on a moving body that wants to collapse.
I felt beaten down to a pulp, and its ongoing and I am bereft.
This is how I feel, it isnt a one day wonder, its permanent, and its persistent, its painful.


Terror is a word I would use to describe my level of care across the board and the basic assessments and dismissal



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.