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.
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
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.

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 


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