awnyah todaysay: So we had a mediation process to sort the mess - d...

awnyah todaysay: So we had a mediation process to sort the mess - d...: ann writes from her hospital bed i call on the Minister for Health and the Director General of the HSE to look past the bureaucracy gone...

So we had a mediation process to sort the mess - did we? I call on minister for health on this one

ann writes from her hospital bed

i call on the Minister for Health and the Director General of the HSE to look past the bureaucracy gone utterly crazy that women, coming to the close of their days have fought for ten full years for a right to have a peaceful, quite and pain free end to their days.

ann was not up to smiling in so much pain

I call on the Minister for Health to see us as humans only wishing for what all wish for, to spend time with loved ones, peacefully at the end of their days when they are so ill and declining, which is the humane way of seeing two sisters struggling over just about everything for their health care needs.
The Director General of the HSE should be ashamed of himself, to consistently hear the stories put to him about both our case and those which are published in the media, on a daily basis, the chaos, the disarray but what more the utter agony far too many are experiencing at present. it IS avoidable to work in a dictatorship.  Avoidable to carry out a regime of awful, brutal, callous inhuman and torturous bad practise and deny your 'duty of care' the state government has given you full remit to implement best practise in the kindly care of its citizens.
the remit of the HSE is to care for the citizens of this state.  that is its only remit
stop hiring people that are inept and unable to perform their job for which they have been hired to perform.
the campaign of terror against sick people is noted by me, as far too many send me their stories, equal to that of the Kennedy twin sisters, the fight is huge.
it doesn't have to be this way.

the HSE was found wanting, by an eminent independent investigator, the HSE was mandated to sort the mess they had created for the Kennedy twins.
this the HSE was agreeable to.
they put to the mediator and only signed for eight hours of mediation, four of which they sat at a table after years preparing for this mediation with not a sheet of paper in front of them, staring at us as if blanked out by something that we were not privy to.

I do know now, the mediation process was a gloss of 'lets be seen to go through this, but also we will agree to do nada'
that is now what it looks like.

they never intended the Mediation to work.
we came prepared for a better way forward.
they came ill prepared with blank faces and staff at local level who have hurt us to the quick by their bullying, their name calling and highly suspect and irregular behaviours.

we will say here clearly that we have documented the abuse, inch by inch documented it, we have named highly regarded individuals who clearly state in writing that what has happened has been abuse.
one such person wrote 'the twins have been badly served by this state and particularly so in recent years.'

we also have stated 'why are the twins being left, it clearly looks as if one twin is looking after the other.'  this was an internal email.

we have had a statement of fact - Ann if its any consolation i never felt you were a dangerous but a kind person, that to the Director General, was sent to me in an email from Mr. Simon Harris TD the present Minister for Health, we had great plans to work with the people of wicklow to make it a better place and he was helping us.

http://www.herald.ie/news/calling-disabled-twins-serial-complainers-is-unacceptable-says-td-35401611.html

but no, the idea of the HSE had it differently for us in Wicklow, lets say they nominated one twin to be labelled, and called guards on an older women weeping at the health centre, looking for help.
weeping at the age of 62 then, after a full night of weeping over her horrible situation.

it is unacceptable not only to call us 'serial complainers' but to call the guards to a health centre to sort a woman who was prfoundly distressed at 9.15am in the morning and needing help, its also unacceptable to follow this up by ringing the GP and claiming she came down in a tandrum and we didnt know why, we want to tell you we called the gards, is that defamation, data breach or what?  

she was banned from the health centre a week later and told not to appear unless by appointment or giving 24hr notice.

we had a veritable witch hunt going on down here.
i wish to remind all who read this blog, i was a community activist all my life, i helped people, i cared about people and i used action as opposed to words and wordage in any policy document that the HSE is supposedly upholding.
'Ask your clients 'what can we do for you' it states on their websites.
Yep you asked, we told and you answered basically 'feck off.'
it is not that easy if you are wronged by the HSE to 'feck off' and you will find the Kennedy twins will never feck off.
the Kennedy twins are not gone out of your lives, they could have been.  should have been allowed be released for both parties sake.
you could have made it far easier if you had engaged in a meaningful and genuine mediation process.
we had asked for direct payments, to organize our care so that all could be released from the painful discourse we are engaging on at present.
not only that we can prove it is cheaper than the way things are being done at present.
it is far easier for all concerned to trial a new way and make it work, then slog pitch dark along patching up, making do and arguing all the way because its not working.
why continue a path that is broken and long broken not with pot holes but chasms of destruction to the workings of the human psyche, body and intelligence.

you have dug this hole deep and the intent to do nothing is very real and clear to us.
but you did and always did have a duty of care towards us.
you did not have that duty of annihilation of two very good women.
you did not have a duty to destroy what was good.
you did not get any ones permission to demean, to torture, to debase and abuse your position of power.
you did not get my permission to besmirch my name so that you come up all rosy.
I have asked for genuine help from you.
lets look at a few things now, lets look at these wheelchairs i put up,

so its OK to give a gizmo like this which is 13yrs old to a person with a progressive neurodegenerative disorder, a while later it loses its back wheel and the patient goes into a wall.  this is acceptable?

this first one was a banger from hell, 13yrs old and too old to be repaired as the parts for it were not being made, yet you felt it suitable for a severely ill individual and caused her to crash into a wall opposite svuh, and you then say 'if you get a new wheelchair will that be it?'  that, from the Disability Manager!
Disability manager - you have a woman who has a rare neurodegenerative disorder, it will not be all, but it is at present or nearly all at present.

say it as it should be named 'a heap of junk'

look at this heap of junk that destroyed my psyche, my body wracked in pain every time i went out on it, look then to what you gave me.
bit of a difference?
yes.
here is the weirdo part of it all.
i have no disposable cash, zero, up to this year i have managed to pay VHI, but do not use it because of the lack of down payments i can give to private consultants, but part of my policy would mean i could have given you 6k towards it.
due to two factors which for two years you couldn't work out for yourselves, you decided to pay for the whole thing yourselves.
'who would own it?'
'what would happen if we had to take it off them for health and safety reasons?'  i kid you not, and they give the banger from heal above which defo was a health and safety risk.
so whilst you deliberated for those two years two women have significantly deteriorated.

we are all human, needing care and consideration - the way to go - MOST DEFINITELY - YES!

we now have these wheelchairs.
it is unspeakably bizarre you turned down 12k towards the cost of these chairs, and deny that 12k being used another way.

it is OK to feel the work of 'best practise' - it is more than OK to feel a human being for once, but all should be treated this way.  the fight was far too hard and made my health deteriorate further.

its unspeakable because we cannot get physiotherapy regularly for degenerating bodies but we could have released money up to do so, that money you refused to accept into the palm of your hands would have served my twin and i in physio for a full two years each.
that's good, that's really good.
that's economical, that's sensible, that's useful and that relieves you of suffering and us of suffering.

you do not like us?
no.
but to be honest, we have tried to work with you and failed.
we have seen and experienced the operational stance you take and think it is vile and unnecessary.
we put a better way forward which we felt would release you from certain elements of 'minding the Kennedy twins.'
we do not need minding, we want a normal life and a peaceful life.
we have informed you of a cheaper better way which many are availing of, you refuse to allow us this last lump of freedom from a grip of a vice.
you refuse to allow us live.
you are annoyed and you are vindictive, you want us to suffer, this is written in the paper of cases in the ombudsman's office, the Human rights commission, Europe and also the Council for civil liberties.
you are just so not getting it.
Ann and Margaret Kennedy just want to live out our days with peace and kindness as companions, with care and compassion with fun loving helpers, and kinder all round.
we do not need this.
i am writing this from a hospital bed, and knowing all the time the utter chaos you have put us through because you felt it OK to do so.
it was never OK to destroy.
you have a chance to rectify it now.
i offer you a smoke of the peace pipe, i offer you a way forward, as always i have deemed it viable, useful and purposeful for all.
direct payments.
no one wants to fight large institutions, no one would wish it on their worst enemy, but the HSE cannot say they are doing their best on this one.  the HSE have been given a vast array of alternatives to our care and having our needs met and never met us half way let alone listened to us.
the HSE just plow the furrow badly and wish never to win the championship, i cannot understand how they do not listen to women of sound mind, who can achieve a way forward and visualise both a better way and a cheaper way to work our care for the remainder of our shortened lives, now very sick and depleted.
i cannot understand how they claim to listen to their client base and consistenly have cotton wool in their ears.
i just cannot believe this is happening.
what i say is being replicated across the land of Ireland. 
there must be a ready supply of cotton wool in many ears it seems.

ARTICLES IN NEWSPAPERS RECENTLY

http://www.independent.ie/irish-news/health/hse-staff-went-on-bonding-trip-as-secret-waiting-lists-scandal-emerged-35441708.html

 http://www.irishtimes.com/news/health/why-it-is-hard-to-punish-poor-performing-hse-managers-1.2971512

http://www.irishexaminer.com/viewpoints/columnists/gerard-howlin/vested-interests-within-the-health-system-adding-to-pain-of-living-on-the-list-442305.html

http://www.independent.ie/irish-news/health/trolley-crisis-has-forced-more-operation-cancellations-35436340.html

http://www.newstalk.com/Macedonian-system-could-slash-Irish-waiting-lists-

 http://www.irishtimes.com/news/health/hse-totally-dysfunctional-says-blackrock-clinic-founder-1.2968005

https://www.thesun.ie/news/535275/irelands-chronically-understaffed-health-service-is-at-risk-of-collapse-as-brightest-medical-staff-head-to-uk/

Abuse as a method of control (HSE IRELAND) and other large Irish institutions

Abuse, used to degrade, demoralise, defame and cause harm is unacceptable in any society.
Abuse which is used to cause so much harm as to make a sick or disabled person contemplate suicide, make their physical or psychological health deteriorate, to me is a crime.
lets call a spade a spade.
those who bully and harrass another, usually a person who is unwell or vulnerable to such an extent to cause lasting harm should be up in front of the courts, with or without the 'ratification of the human rights convention for people with disabilities.'
ALL agencies who conduct a systemic, abusive system that is akin to torture and inhumane treatment should be before the courts.
those who condone it as a methodology should be before the courts.
those who sanction it, accept it and turn a blind eye is complicate in a crime.
it is a crime to abuse your fellow human being causing serious harm to their quality of life, their basic rights to be equal in their own country, if denied them, is a crime.

we are in such a situation in Ireland.
i am writing from my bed where i will be until i can get into a hospital bed.

i am writing after hearing of yet more abuse of a sick and disabled woman.
a woman of high intelligence brought so low she began to even doubt her own self and her confidence was ebbing fast.
i am writing as a woman who has doubted, severely doubted my ability to continue on in the face of such systemic abuse by the state of ireland and the healthcare system.

why do you think my fight, my main fight has been one where i receive the 'permission' to get out of a system of abusive power over my whole life and existence.
why is it that, some can have this right handed to them by virtue of them being well, and therefore not needing a healthcare oversight.
so if you are well, you will not be harmed by the state in terms of your health.
i chose, and i demand a right to have an equally happy, fulfilling life as an equal, that is even before the ratification of the rights of people with disability in the human rights convention.
NO country should stand by and accept what is going on here.
when its systemic, it is endemic.
programme after programme we hear of the tears, the pain of the suffering of ireland.
we hear of severe deformity of bodies, as bodies fail and the government of the day deny them the right to walk tall and yet this is seen as a financial issue.
its a human rights issue and one of equality.
while those that can pay can have a straight back, those who cannot and when the healthcare system is in such crisis can have backs that curve to a degree of 96 degrees, this is shocking.
we have the other groups, the adults, who have become sick and disabled, some shoved into nursing homes in their 30's for want of supports in their own homes.
and we scream from the rooftops that Ireland at least have accepted the 'social model of care' and Ireland believe that we should have care in the community and in people's home.'
how can we get it so wrong?

how can we have policy after policy saying all the right things, but the workers at the HSE command demanding you silence the sick, abuse the sick and ignore the sick.

it is not 'legal' to whip away staff from a sick person's home, leaving them unable to cope by themselves entirely.  it is illegal to deny them the right to have a bath and the right to get into a bath because of some vindictave stance of a disability manager who after wining the right to have your own bath then denies you the right to use it for two years, but you can use it if you put yourself in danger.

how did i save this famous bath, saved for its therapeutic values when no therapy is ever offered.
i saved it through the present Minister for Health who intervened.

how did i overcome the wording of being a 'dangerous person'
i have not.
it is wrong to defame an individual, claim they are such and never give them a right of reply and let that hang on files and in offices this side of where i live presently.

it is wrong.
anyone considered dangerous has a right to either be proven as such or disproven as such.
in the present situation you can be dangerous one minute and then fine the next, they (the HSE) can call the guards to the health centre, this is over and above how wrong it was to call us 'serial complainers'  it is also wrong to call the guards on older people who come weeping to the health centre, depressed, crying and suffering only to find the police have been called and a week later banned from showing your face at the public health centre.
this is what is happening in ireland.
you can actually be banned, from seeking help!
you can be instantly labelled in macrabre style, and never find a way to have a right to a reply, correction or vindication.

why do you think i do not want to work with the only healthcare system we have in ireland if its so wrong to abuse in such a manner.
why do you think i chose to do my very upmost to gain my rights to live equally, as normally as possible, the way i chose, away from abuse.

Direct payments WILL come in, but right now i am suffering so greatly i want mine now, because i believe wrong has occurred in my case.
i believe i should be set free from abuse.
i should be allowed to live out a shortened life in peace, away from abuse and bitching.

i have to end such a damning blog on the people within the HSE.
remember, we are thinking about workers who are trained.
i want to ask the very reasonable question = how are these people being trained?
i also want to ask the very reasonable queston - if some can be kind and caring why is it that we keep the abusive players in the Irish healthcare system?
we have very kind and wonderful individuals, all wishing to do their best for their clients and help their clients.
but we then have the complete opposite, those who never get close to their client base, who forget what their jobs were originally (all before becoming managers would have helped in the caring professions).
if you are divorced from sick people and jingle money you are never going to see your clients as people, human beings, you will see them as a STAT someplace.
and then we have the way we think in ireland and the way we have a communication system from hell.
eg 'copying and pasting' accusations from one department to another, and from one organisation to another.
we have done alot of people serious harm by thoroughly bad practises, which are unsophisticated, confused, chaotic and unprofessional.
mistakes get made when the teams are not professional.
most of Irish mistakes in the Irish healthcare system is through dreadful training and dreadful stigmas, accusation lych mob style dynamic always only asking the questions after the horse has bolted.

I want the HSE completely and utterly out of my life.
when i am told that the HSE is all we have.
then give me the good ones, i want to sack the terrible ones.
i also want ownership back of my house, my home, my psyche and my relationships, they can't have it everyway.
stop the abuse.
give me and many others the peace we need and want to end our days with our disabilities.