Sunday, April 30, 2017

little Ireland with little healthcare

it is a very tough country to be sick in.
bank holiday - May Day - the workers holiday, those who toil and sweat get a day off just because they toil and sweat.

there is no day off from torture in Ireland.
many will see that as a very strong word indeed.
i see it as a truthful word that most would shy away from, as a reality here in ireland.

i heard a word the past few days, a scandelous case of 'waterboarding.'

tell me please, if you are treated by the state health care system HSE with utter contempt, and you are fed drip drip tiny bits of help but only coming ad hoc with no real effect to daily living is this not torture.
is it torturous to try and get a care plan in place and trying to do this now for a decade.
it is.
is it torturous that in a country where the government of the day claims we are 'on an up' when most with disability and sickness are very much on the down.

lets look at some of the needs that need addressing and why i see it as torture.

hydrotherapy is an asset.  it now is a standard of care for a myriad of conditions around the world, extensively used and proven benefits documented.
most modern states can provide hydrotherapy for the worst cases and chronic disease cases - not so little Ireland with little healthcare.
did i think it was that difficult to get three quarters of an hour in such a pool once a week?  No i did not.
its impossible.
of course i cannot ask around, i have no clout.  but those who have have failed on my behalf and that of my twin sister.

its not that these pools are exactly butlins on Mayday.
they are used yes, but not hour in and hour out 24/7.
we have lost a dear friend of late, Donal Toolan.
Not so long ago i spoke to him and told him i was finding it impossible to get into a hydropool recommended by at least five consultants.
he told me a few months ago it was the only thing that kept his pain at bay.
we spoke of this at some length, and it is true, we know the benefits.
we now know the benefits to even infants and the elderly.
but we cannot benefit because its not available for my twin and myself.

beds and sleeping also is another indicator we are on a slippery slope, how long is this debate going on?
well a very long time.
what does the HsE do?
well, they throw 'toppers' at you, foam, some three inch thick, some more or some less, some with ripples, some as cubes but in essence they are cheap ways of preventing pressure for those who do not move.
i move too much.
they also produce heat and i cant cope with that.
the glorious letter writing detailing how we have had five to seven chances with mattresses is but a fob off to the reality of five to seven toppers of foam for bedsores which i do not suffer from.
these letters wing their way to the TD's.
then again we have companies and retailers say that the HSE do provide sophisticated beds for the chronic sick in ireland.
but we twins, the ones with the pink hats cannot get the HSE to engage on bed and nighttime at all.
one such lassie came and then disappeared, never to be seen again.
i am in a hell.
there is more than this going on.
far more.
there is name calling, denegration, fob offs, procrastination and injury in extreme.
torture is injury and also lack of care is injurous.
we do not have euthanasia here in ireland but you might as well, for that is what i feel is happening my twin and i.
left to die at home with no health care.
well everyone is asking that.
what happened the Grace case whistleblower?  what happened Maurice McCabe?
what happens in ireland if you spill the beens, we must look to all whistle blowing in ireland and vocal individuals who say it as it is as opposed saying it as they would like to hear.
there is an answer to the extreme pain we are suffering in little ireland its called revenge and inflicted intentionally.
imagine a healthcaring organisation, advocating its citizens be watchful of elder abuse whereever they see or withness it.
hey man, visit, because i can tell my story, its elder abuse.  On a grand scale.
its even happening in the Minister for healths own patch, simon harris, on the minister's childhood estate and the ministers own road for the school walk he would have taken.
but there are two women suffering here.
very much so.
the flourish to help was evident in a history of trying to make things better but now its someones turn to help us, we dont ask for too much just what you would give to very sick individuals. as in a healthcare befitting the 'heavy disease burden.'

if people dont understand why we are not getting it.  i dont understand it either.

its a shit country to live in when sick and that is all i know.
you just want to die in the end of it, you do.

Friday, April 28, 2017

the suffering is unbearable for us twins, in Ireland

looking to see 'HOPE' on the menu!
at the Brain conference.
the suffering is unbearable in a country that seems to despise the public healthcare services, and a country where it decides now that the public who havent the insurance are treated with contempt, on all fronts we have no systems in place.

am i missing something here? because this blog is my testament to the very thing they are speaking of.
do we need research to tell us we are the forgotten ones?
do we really need it?
more of the same?
c'mon doctors, and HSE just get your ducks in a row on this one please!
fighting now for well on a decade for a basic care for serious, very serious progressive neurodegenerative disorder we are now suffering very badly.
this is an offense and a blot on the Irish landscape as it claims its 'in recovery'  yet i am unsure what is in 'recovery' i am not.

when Prof. Hardiman (neurologist) puts up such a slide, we take this all on board, its the truth 
Lists are in order, to explain what is so missing in the care for my twin and i and its stark and having a profound effect.

getting sick a decade or more ago we began a muscle wasting problem but since then no physiotherapy that is sustained or ongoing is ever given, we may get a tiny bit here and there but that is all.
there is no consistent or ongoing hydrotherapy and the fact is both of these therapies have been mooted from day one, well over a decade now since first written down.

this is neglect and an offense under the non fatal offenses against the persons act.
ditto is coercion and harrassment, which we have had in spades.
any harm done has been done by the irish healthcare system.

looking to see 'HOPE' on the menu!
at the Brain conference.
this is for all countries, so....(i think)...we with problems are fucked in this area.
what we have not got and should have:

a neurologist
a neuromuscular specialist
a neuromuscular specialist nurse
a neurophysiotherapist and still without a neuropnhysiotherapy assessment ever.
this is bizarre in extreme.

the effect is 'go home and die.' without sustaining the body as through intervention at a skills level that is what is happening and that is what we have been told by 'default.'

we have no night time care.
not enough PA's to cope.
we have no social outlets or stimulation and every where we attempt to get help we are shown basically 'the door.'

care in ireland in the public system is outrageously flawed, absent and our nation is being neglected en masse but those who have them insurances can never see the difference in the care we receive as opposed to them.

single adults are the worst effected, they cannot produce the family as support and are run ruckshod over, women fare worse as we are believed to be more malingerers and feigning illness than men. the famous gender stigma is perverse and pronounced.

can this wonderful Prof. O. Hardiman say it as it is, YES, she can and in fact is as sharp as a button on the state of this nation!
i am designing a lapel button, it will denote the irish citizen that receives no medical care for the disease burden she has, i will put it on teashirts, car and everywhere and i will quote the World Health Organisation and our fundamental rights to healthcare which we cannot get for love nor money and at present we have neither love for the system nor money to buy the care we need.

posh voices, poor services and that is the way we remain, our voice sort of pitches all towards the elitism of posh voices, the posh voice my friends is an echo of past times, i have no issue being the present gurrier, at least we, as gurriers say the flipping truth and support each other and are the salt of the earth.
by the way i am also unhappy with both Leo Vladakar and Coveney for cooking the stats books, exaggeration is seen through by this gurrier.
meanwhile i make my videos and say it as it is.

Tuesday, April 25, 2017

when the Irish simple do not understand words, phrases and ideologies, it has to be explained. Manure Curley Carrot does this.

Wisdom from a Carrot

Meeting the HSE
Manure Curley Carrot-Top

It is a
 old World

Playing the dumb carrot

Ms. Curley Carrot-Top has this definition of playing the dumb carrot – by example lies therein the truth of ‘playing the dumb carrot:

what do they mean by ‘ongoing physiotherapy?

Curley Carrot-Top is not fooled – so tries to offer assistance in the task of understanding.

to   HSE

Respondents to this question have answered the following:

Long term
Should mean it is happening
Webster Dictionary: continuing to exist, happen or progress. Continuing without reaching an end.
Continuous, ongoing and regularly
Continuous. Frequent. Repeated.
·       Oxford dictionary definition:  Continuing; still in progress. Eg ‘This consultation remains ongoing and as a result, no date has been set for closure.’

SYNONYMS (oxford dictionary)
in progress, under way, going on, continuing, happening, occurring, taking place, proceeding, being done, being worked on, being performed, current, extant, existing, existent, progressing, advancing, evolving, growing, developing

Misunderstanding can get in the way….

Postcard from ‘Sunnyside Up’

Dear Mammi,          .      Ms Carrot
Wish you were here.  .      c/0 CHO6
The sun is bursting   .      Dublin
Bright in the skies    .      code unsure
Burning me to a      .      (try the
Frizzle.  I left the   .      postman- 
Lotion in the bath-   .      very
Room.  Guess there  .      reliable)
Is no point in         .
Sending it on.         .
You wont recognise  .
Me when you see me  .
Me skin hurts, I may  .
Need you.              
Love Curley  

A postcard from ‘Sunnyside Up’

Dear Mammi,           .
Its pissing out of     .     Ms Carrot
The heavens, stayed  .     c/o CHO6
Indoors, goose bumps.     Dublin
Like the measles.     .     (I know the
need your soup.      .      area code
Second thoughts –    .     but too cold
Maybe not.             .     to think (so,
                               Ask local
Love Curley                 postman
                              (they know

HSE Logo 

Dear Mr. Minister for Health (Teachta Dala),

Them twins are getting a ‘skilled professional service.’
This is the definitive version.
And if you believe that – you will believe anything.

Yours sincerely

Acting head of Disability
Area CHO 6
(‘acting head,’ secunded from Mental Health – the real one is on pregnancy leave.  Rest assured, she has paid her stamps and is full of entitlement).

The manure bunny trap = venus fly trap

There has to be song in this one, if there was it goes something like this, (goltrai), I do believe.

John Steinbeck once wrote that "they're a dark people with a gift for suffering way past their deserving", about the Irish. I couldn't help but agree with him on this quote.

John Steinbeck, who be the Derk People?  Is it the HSE or the suffering?
Manure Curly Tops Carrot’ will explain the Dark side of the dark people who inflict suffering way past OUR deserving.

‘Barney McKenna - I wish I had someone to love me

Christy Moore – Natives

"For all of our languages, we can't communicate"

This is for the education of the Minister for Health and the DG of the HSE, it clearly is needed in spades.

Emphasis is on the spade or the shovel digging for this.

(shovel is drawn here and a spade for comparison)

Fake news
by Manure Curley Carrot-Top:
the Irish meaning of:
  10th Anniversary of the adoption of CRPD: 2006 to 2016

  The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects”  of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.
The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.


Down with that carrot says the Minister with ‘special’ responsibility for those (in Ireland) with a disability.

E.g. In other words, plain (Irish) speak “Fuck THAT!”

Safeguarding Vulnerable Adults
All adults have the right to be safe and to live a life free from abuse.  All persons are entitled to this right, regardless of their circumstances. It is the responsibility of all service providers, statutory and non-statutory, to ensure that, service users are treated with respect and dignity, have their welfare promoted and receive support in an environment in which every effort is made to promote welfare and to prevent abuse.” ‘Safeguarding Vulnerable Persons at Risk of Abuse – National Policy and Procedures’.
In December 2014, the HSE launched its safeguarding policy for older persons or persons with a disability that, as a result of physical or intellectual impairment, may be at risk of abuse.
The “Safeguarding Vulnerable Persons at Risk of Abuse  - National Policy and Procedures”, which applies to all HSE and HSE funded services, outlines a number of principles to promote the welfare of vulnerable people and safeguard them from abuse.  These include a requirement that all services must have a publicly declared “No Tolerance” approach to any form of abuse and must promote a culture which supports this ethos.

 Down with that carrot says: 
(HSE logo here)

(HSE Logo
The Director General of the HSE and Mr.Pat Healy

In other words, plain (Irish) speak “Fuck THAT!”  add HSE Logo here please!
“A Strategy for Equality”
“We, as people with disabilities, are shouldering our responsibility to ensure that disabled people are “included” as full citizens in Ireland. It is now time that everyone else joins this process, so that we can all live and participate together as equal members of society”.
This Report is an equality strategy which will, if implemented, set about removing the barriers which stand in the way of people with disabilities who want to live full and fulfilled lives. It will also benefit greatly the parents and carers of people with disabilities. The Commission’s strategy involves legislative solutions, proposals for new policy initiatives and new structures for delivery of equality services within a framework of rights, not charity. The Commission has developed a model of service which places the user of those services at the centre of the process of service delivery, from the planning stage right through to implementation.
So says my friend Paddy Doyle on his website

In other words, plain (Irish) speak “Fuck THAT!”  consider a HSE logo here too please.


Social Care

(the reality of “sunny side up)?”

The Social Care Division was established to support ongoing service requirements of older people and people with disabilities. It is a fundamental step in moving forward with the design and implementation of models of care across both these Care Groups to support and maintain people to live at home or in their own community and to promote their independence and lifestyle choice in as far as possible.
National Director Social Care:  Pat Healy
Ph: 01 635 2308 
Social Care encompases

In other words, plain (Irish) speak “Fuck THAT!” Logo of the HSE may be added here.