the disability trail to nowhere fast NDA at Croke Park

due to ill health i was unable to attend the NDA invitation to open discussion on part two of the statedgy for implimenting a disability whatever.

this is disappointing, but reports have filtered back which states that it was pretty much more of the same and being spoken to or down to in the grand old style that is typical of government funded organisations.
this sort of rhetoric of huddling together all the disabled interested groups and organisations and asking their experienced views has been done over and over and over again, for the past twenty years....nb lunacy act 1800 and something still on the books of good old Eire.

we have been asked to write, draft and submit  ad nauseum to the horrible drafting of a disability agreement part TWO no less, that is a 'strategy plan TWO no less'

which basically means its a draft.
just like the one that has hit the dust before this round, and the one the bite the dust before that again.

we are absolutely brilliant at this.
we hand out cakes with one hand at these events and speeches and 'how great thou art' and all that, but nothing ever becomes of this.

nb the lack of ratifying the Human Rights Convention on the rights of people in Ireland with disabilities.
the lack of this shot down a case in court today where an autistic man was hauled off to the police station in cuffs, yep, but because we have no human rights and it doesnt apply in irish law the father who took the case i believe lost this case.

its so idiotic that to be part of something and our gov says its proud of being a part of europe, a part of the EU, the UN and all we still won't agree the Human rights convention for those with disabilities!

so we have no rights.

thats part one of the blog over, and it doesnt get much better.

how it acts out for those who are sick and disabled too.
we are not doing too well.
i am not doing too well.

news filtered out to me over the past many days that there was a suicide within the hse and of course you wont find that in the media.
but it occurred.
i want to know why it did, because if its anything like the brink ship that happens when you are in profound distress as a sickie in holy ireland i can well understand why.

the HSE is a detestable organisation.
raftered up and shored up by a massive legal department, it is need of abandonment and got rid of, grand style and start all over again style.
no one in ireland has the wit to know how to do this, how to put something else in place and how to deal with the dregs that remain.

what we do in essence we sack the vile and keep the good and there are some good but there are pretty vile people there i have to say, they usually are the gate keepers of the cash.

they have no soul, no mercy and no empathy and yet all are qualified in some healthcare field, we are not speaking of accountants or financiers, we are speaking of managers with a primary skill in a healthcare capacity given the remit to manage the finance, something they cannot do well because its not their primary function.
the function of healthcare officials is to be helpful to the sick.
the money minders should not be managers of departments, i am sorry to say they shouldnt.

we do not 'do' management well, but mostly most know already that the HSE have this down to a grand and accomplished scale of zero out of ten.
they just dont seem to be able to manage it.

things like top ups have to stay because someone didnt think of a way out before it was agreed to offer top ups.
junkets on some ridiculous overseas rub shoulders affairs are rampant, most i believe go undetected.
we also have of course, inability to sack a civil servant so if you are shite at your job you cannot be sacked.
but we need to be able to sack em, just about everyone else is if they are lousy at their work.

rules such as these:
they only have mattresses in the HSE which they can give out to sick in the community which are water proof and bedsore preventers.
they do not have the sophisticated skill to tell a person or advise a person how to sleep better when the mattress is causing deep pressure and pain from an entirely different cause than old age, incontency and inability to move.

therefore in a myriad of conditions for people who need to sleep well only bed sores are cathered for.
thats irish.

another daft as a brush rule being if you do not have a diagnosis you do not get care
but then what about the many rare diseases people have who are struggling with the unknown although everyone knows a person is significantly disabled it can bar you from care without the defined diagnoses of a limited known few, and believe me there is a limited known few when many are sick and on death's door sick from an ill defined illness and disease which is genetic in base but yet the defect may not be found soon enough or ever will at all.

that leaves you out in the cold.
heres another, what about having a rare disease that is considered now eradicated therefore it doesnt exist at all, but when was it eradicated, before or after you got it.
well after in my case so i still have the rare disease.

you cannot dumb down everything to a common denominator and then leave the rest off the  radar for attention.
'have you got that in writing my neurologist asks' when he wants to know if my rare disease has been defined as i was told it was from the expert unit.
patients of course are liars, they couldnt tell the truth for love nor money.
we are pathological liars, so if we do not have a name it doesn't exist.
ostrich ireland land of the upturned arses.

HSE medical treatment and personal history made pathological

i have nothing to hide, nothing to be ashamed of and know i have a chequered history.

it is when this history becomes pathologised then i will speak out.
when i say that all should be aware of something before it ever happens because sure as eggs is eggs when it happens its very difficult to deal with.

I was born with severe deafness and was very shy young lady on leaving school.  i didnt do well when i left a sheltered environment and its because of my profound deafness that both my skills as a diplomatic communicator was nil, but also my social communication was so poor i was left out of everything.
i became depressed about it all.
we were in the 70's then, not a particularly enlightened era (but then what i am experiencing now tells me this era isnt either!)  i entered the psychiatric system as there wasnt any such thing as psychology then, psychiatry was the only discipline open to us who were finding life tough to adjust to.
decades of medications and not a lot of living i left that and went for therapy, i was  fifty.

fast forward again i became very ill and pretty much no one knew what was happening and i was a bit of a mystery.
i was told to take the anti-depressants and with that left at home with not a lot else being provided.
i did receive an apology from the psychiatric services, they tell me i should never have been there.
i asked why was i and if they realized nothing much was changing for me why didnt they change their heavy regime of  over medicating.
they had no answer to that.
with the apology i asked the director of care did she not think it was a bit late, i now was unable to walk much and was on sticks and i then graduated to wheelchairs and more besides.

but i did get far with therapy and began to feel far happier.
nothing prepared me then when i became so physically unwell.

it is ongoing.
there is inuendo as to my past history.
doctors with a specialty of neurology and rheumatology regularly state stuff about suggesting i attend psychiatrists and i do refuse these suggestions and have a right to.  this is seen both negative but to suggest it in the first place is out of order for i am not mentally ill and never was.
the rheumatologist puts down my breathing issues as possibly my underlying anxiety disorder but i never was diagnosed with this either, either when young or now and i see no one now who have the skills to determine this so how on earth are these statements ending up on my medical notes?

they should nt be.
but my history dictates that all within the medical field can say it with conviction when they know once i was and maybe now i need it as i had once before, but i can say i was offered an apology.

no, of course that too isn't believed.

what makes it even more alarming i seem to have some condition that doesn't make sense and no one seems to be able to determine why i am so ill.
now i have already been told i may never know.
but i do want to.
because unless i know the innuendo will remain that this is some kind of fabrication.

when you get notes under foi which you are legally entitled to do, you could weep so you could.
the jury has been signed in, the executioner is whatever medical discipline i have been to and sentence passed without any proof nor without any expert opinions being sought.

the sentence is read out by the least qualified of the courts, the head of the jury but the judge of course has already directed the jury.

i remain pathologized.
and unless i can find vindication from somewhere i don't think i can live in an archaic system where such things are allowed that mistruths, suspicions around sanity, reality and pathology are blurred.

to me there is one way of dealing with a symptom and there is only one way of dealing with it.
you tell a person who is best to advise what it may be.
you ask for help and you are so friggin naieve that these 'experts' will believe you that you trust them to find out why you are having the issues you are having.

but when the doctors fail to care for you, fail to advocate for care and fail to write letters on your behalf and conducting tests to rule out certain things then we know we are in for a terrifying end of life scenario, this is little ireland.
the doctors are mini gods, you simply cannot question them and most don't.

but that doesn't also make it right for them to imply that anything i should say is either psychiatric or anxiety disorder,  neither of which i have and never did.

i was a shy young immature lady in my twenties, extremely deafened and already been sexually abused so i was frightened of entering adult life, again these do not make one mental, nor anything near it.
talk about counting five plus five make five hundred?

but this is ireland.
it could very well be every other country because those who enter psychiatry can never get away from their history.
try being a self injurer as i was then.
well that is instant loopers status, even though i am now in my 60's it still means i am permanently loopers because i show permanent scars.
what say anyone that i got out of that behaviour and took charge?
what if this is what happened, and it did happen, can you ask others to believe you or even by demonstrating responsibility for ones own life can you prove it you have taken charge.
not at all.
you will and always will be the looper.

this is pathologizing an individual to death.
and that worries me because i see i could die from this.
i could be ignored and could die.

it does and can happen and i am an extremely worried woman.
i have that right to be.
i believe i have every cause to be.

HSE and Consent

i want to make a few things very clear.
this is so that others know and understand their legal rights.

YOU DO have rights in Ireland, they are there and lets not be blinded by the facts that are placed out there  in the lives of many a sick person here in ireland.

I am going to concentrate on the ones that failed me and for which i suffered very badly and because of this i want to warn others of various ways of finding out your rights.

Ok, so you or your loved one is sick or disabled or elderly and wish to apply for an adaptation grant to your home.
up until recently this grant applied for all with a disability, not just to certain brackets as those who use a wheelchair.
these included those with sensory issues, learning disabled, asperger syndrome and mental illness, they also covered problems within the living spaces that are not confined to the bath areas, they include adaptations to the whole home, whether it be the bathroom, the space, the lack of space and the various type of illness disabilities you are applying under.

If you are sick and disabled you do need advice, but be sure you know its advice you need and remember NO state body can ever tell you what you have to do to your home in order to avail of this grant aid.
there may be stipulations, but the ROLE of the Occupational therapist, and you are advised to get one on board, is just that ADVISORY, its not compulsory, there is no compulsory order for you to biff out your home according to his/her plans (HSE OT) and especially without your consent.

they have no rights in law to decide what you have to do with your home and there is no law to disallow  you be present during discussion regarding your own home.
this is actually totally illegal.
they CANNOT ban you from being present at any meeting that takes place when your home is being discussed, this is illegal.
(it is also illegal if they attempt to keep you out of decision making regarding a relative, a sibling or about care or otherwise, you are the important person when it concerns you and your own family, you are not allowed be usurped by the HSE for any reason whatsoever, at all times you have legal rights to be present at meetings and your consent is enshrined in law.
they cannot ban you from the health centre for any reason whatsoever, this is a public place.

they cannot send in any plans regarding your home, any reports regarding your home without your prior approval, your input and without due regard to both your wishes and your disabilities, in total your wishes and disabilities, not concentrate on one.

Remember at all times you DO NOT have to get the public OT on board even to do the advising, you can get a private OT, and there is a short supply of public OT's so a private one is just as acceptable, at least then, the state will not collude against your wishes.
remember, its happened to me and it is illegal.

Fact 2 regarding dealing with the HSE

try and get a second person on board to help you at all times when negotiating around health and health care, there are many good organisations out there and many good people usually alongside a second relative its good to have these people on board, but remember most are being paid by the HSE so trod with extreme caution.

we have both the Centre for Independent Living, Inclusion Ireland and the Disability advocates within the national advocacy service.

also refer at all times to the Citizens Advice Bureau and if in doubt make an appointment to see a solicitor there at the CAB offices in your area or contact Free Legal Aid.

Keep every single piece of correspondence you make with the HSe.

Date all documents you write and keep a copy filed accordingly.

Register every single letter you send and if you speak with an official follow it up with a letter regarding content of this vocal dialogue.

Never meet a HSE official on your own, ever.

Insist repeatedly on getting copies of your file notes under FOI you have this right and you have the right to have this sent to you by a certain time frame and if you have not you are legally entitled to know why and make complaint about this and seek legal advice.

remember too, know the limits placed on you where you can complain to because consistently the complaints processes are not adhered to, half undone if done at all and there is also a legal time frame you can take a case of injury against the HSE.

that is not to say all issues you have can be dealt with as you wish they could but other avenues remain open, you can contact media, make vocal and video recordings of your experiences after the fact, you can place on video your feelings about the wounds and the hurt and the injustice as they are being played out, remember to to 'voiceover' time, date and when and where they occurred.

one day your voice will get heard, those who persist will be heard.

as i write this i am very aware that i put my URL on the bottom of every single email i send including to the HSE.

they come in here i have no doubt.

they know me and they know that i will never let up until justice is seen to be done.

do not get despondent, do not believe just because we have not sanctioned the Human rights convention for the rights of those with disabilities that in law you have no rights, you do.

you have them under the Constitution of the land, look this up in every case of mishandling of your affairs.

you have the 'fundamental rights' which Ireland is a signatory and within the EU you have also rights because we signed up to the EU charter and many laws there, apply to us too, we have rights.

The human rights commission is considerably watered down under the present government and in my mind are in complete and utter disarray.

the Ombudsman's office ditto, its been weakened and there is less cohesion there too i feel.

The equality tribunal is not equal, unless you have pots of money to fund a solicitor you have little right to equality in law here because the hse will descend on you with a ton of bricks and can legally run all  over you in the space of a minute because they have a very weighty legal department and its the largest employer in ireland so in terms of equality its very unequal and you are but a fly in the ointment.

remember too there are places to go to find out rights.

NUI galway and a disability and law unit and many there are incredibly helpful.

most disability organisations will be able to tell you how to cope with the hse and manage your dealings with them.

but be warned, its a very very hard road, and they want you to give up.

they want you to fail.

it is about being true to yourself and your integrity.  if you have been harmed the truth will come out, someone it will and someone will bring it out even if you feel it never will be heard, it will.

never be afraid.

many are in the same boat.

and to make sure you are going to improve the state of hte nation, do not vote this present government back in because what they have done to the legal system, the human rights commission, the equality tribunal and how they weaken the citizens who have least ability to fight is a crime against the citizens of this state.

angry, you bet i am.

about consent:  this is the national policy regarding consent on all levels of healthcare;
Know your rights.

National Consent Policy

What is Consent?

Consent is the giving of permission or agreement for an intervention, receipt or use of a service or participation in research following a process of communication about the proposed intervention.

Why is Consent important?

Consent must be obtained before starting treatment or investigation, or providing personal or social care for a service user or involving a service user in teaching and research (all defined as ‘interventions’ for the purpose of this policy). This requirement is consistent with fundamental ethical principles, with good practice in communication and decision-making and with national health and social care policy. The need for consent is also recognised in Irish and international law.

Other than in exceptional circumstances, it is important to note that treating service users without their consent is a violation of their legal and constitutional rights and may result in civil or criminal proceedings being taken by the patient. Such exceptional circumstances relate primarily to emergency situations where it is necessary to intervene in the absence of consent in order to preserve the service user’s life or health, or where the service user lacks capacity to give personal consent and a decision is made in his/her best interests.

What are the requirements for a valid consent?

In general terms, the constituent elements of a valid consent are:

Decision-making capacity
Disclosure of information
Comprehension
Voluntariness
Agreement
In everyday health and social care practice, circumstances arise which may challenge frontline staff in seeking informed consent from service users. These may relate to, for example, carrying out an assessment of the capacity of the service user to give consent, uncertainty regarding the age at which consent may be given, what legal issues arise regarding children of unmarried or divorced parents, children of minor parents, wards of court, and so on.

What is the aim and scope of the National Consent Policy?

The National Consent Policy provides one overarching HSE policy to guide staff. The need for consent, and the application of the general principles in this policy, extends to all interventions conducted by or on behalf of the HSE on service users in all locations. Thus, it includes social as well as healthcare interventions and applies to those receiving care and treatment in hospitals, in the community and in residential settings. How these principles are applied, such as the amount of information provided and the degree of discussion needed to obtain valid consent, will vary with the particular situation.

Further information

Link to National Consent Policy and guidance documents

Who can I contact for more information? 


Quality & Patient Safety Division

OWN UP....WHO STOLE IT?

today is Tuesday 3rd November 2015, doing a bit of mathematics here i am on this planet now nearly 63 years!  just think of it, thats a long time.
ok then.
i will tell you another fact of MY life, its not a life!
ok then.

If this is the FACT of my Life at 63yrs of age i want to ask my friends who come peek in and see what i have to say, to have their say on it all.
it matters.
on many levels it matters.

well, for starters MY Life matters to ME if not to anyone else, it does to me.
It matters because experience outside of my own might be the very experience i need to move this 63yrs on to 64yrs as a happier adventure.

the criteria for your ADVICE as in 'the bloggers agony aunty and uncles write back' are many.
To be considered....are.....
1.  the blogger is sick....i mean....very sick.
2.  the blogger tires easily....that effectively means she is flat on her back, sleeping alot
3.  the blogger gets depressed....(no, one of your suggestions cannot be head straight to the psychiatrist, can't stand the breed and believe they are more dangerous than the Life itself).
4.  the blogger is cash strapped....in common language....the blogger is basically out of cash.
5.  the blogger has a sister, twin in fact.
who is..
1. 2. 3. (same applies) 4. and 5.

This blogger needs to regain her joy, the joy of life, the joy of being, the joy of where i am, where i live, etc.

so its a tough task i have set you all.

Find my life and give it back to me.
i have lost it.
many years.
i know its not under a stone or yet under the gravestone or headstone.

its just gone missing a while for a bit.
a bit too long, like.

i kinda want it back.
so i am asking for a road map, as in Treasure Island style, not for money, for my Life...Back.
Ideas.  A task force for Ideas.

the world is spinning as we speak and as i know it is, so too is time.
its running at equal earth shattering speed and before i collapse with a menieres attack i want to live a bit better.
Joy its called.  Well, i think its called that.  it was called that the last time i felt it.

but it may not be here anymore as also i think i am not the only one losing their joy, but then in real terms, the task is to help this one blogger find hers.
it may seem selfish to ask for my life back please, but i think its important.

It cannot be found under a stone (i don't think) because it was never there, before now.
it was up there with blue skies and sunny days, in the head department.
its gone to me boots.

What can I DOOOO.....................................to get my life back?.....................Please.

If your life depended on it, will you suggest how to find my life, give me the road map.
(or two even)
there is a shortage of road maps.
I have two on the ledge above the drivers seat of my van, but they are no good.
i need yours.

have you got one to spare then?
i hope the hell you won't say 'no, i haven't.'
i hope its because you are not the equally selfish git and won't allow me in on it or into a type of Joy thats gone missing from my road, map and life.

i want a sort of "how to build"
I want a sort of "where to travel"
I want a sort of "how to find friends"
or something like, Life on a shoe string,"  "Life with no life at all"  "Life with dogs"  not "its a dogs life life, but with dogs"

I want the sun over my head (not strong now cos i don't like strong sun) but there nonetheless.
i want blue skies too.
Not gray, and don't bother telling me i am asking for too much because we are heading into winter, one that the experts advise will be the worst in living memory.
i tell you it couldn't be worse.

I am going to give you a few pictures to sort of help you on your way with the Ideas and road maps.
everyone likes pictures.
everyone loves pictures.
so after i show you some pictures to give you ideas, i then want yours.
as in send back your ideas for me by way of comments and you could get another picture.
you will get a 'thank you blog'  (doesn'

I understand, yes i do, i REALLY do!

And i love you very much...

DON'T YOU WORRY ANA, I HAVE YOU BY THE PAW

BACK TO BASICS - WHEN THE HEAT GETS TOO MUCH - WE CAN SHARE THE FAN

VICTORY WAS SWEET, JOY BRIEFLY BUT WHY OH WHY DID EVERYONE CRASH OUT AS WELL AS WIN THE BLOODY MATCH!

THAT'S A FLOWER, AH I TOLD YOU I LIKE FLOWERS.  DIDN'T I?

WHEN I GOT SICK FRST I HAD MY TEETH, JOY AND TWO DOGS, THERE IS ONLY ONE THING I CANNOT EVER GET BACK - THAT'S THE TEETH!

SHE'S OK, TOLD YOU THAT, I WILL KEEP HER, THE ONE ON THE RIGHT, SHE IS A 'REAL' DOCTOR!I AM ON THE LEFT, ITS  MY JOB TO ADD 'COLOUR' BUT THEN ITS YOUR JOB TO TELL ME HOW - AGAIN!

I TOLD YOU, YOU CANNOT REFER ME TO THE PSYCHIATRIST, - I TALK TO DUCKS - SO?

JOY IS.......STICKING FAST TO WHAT IS GOOD FOR YOU!

JOY IS BEING ON THE TOP OF THE WORLD
(THATS A HINT)

JOY ISN'T - CRASHING THE VAN AND NEARLY ENDING UNDER A STONE.  JOY ISN'T PUTTING THE PICTURE IN SIDEWAYS AS IF IT (THE VAN) HAD TUMBLED, WHICH IT DIDN'T, IT JUST HAD A FATAL COLLAPSE, (SO TO SPEAK), IT DIED, ACTUALLY.

t have the same ring as 'thank you letters,' but then we are actually out of that time zone now for good i think).

i am praying now that the ideas will be good.

I like photography, people, sheds, nature, sea, driving, the sister and my dogs.
those are hints by the way.
i like sometimes, diy and upcycling and repurposing and tidiness.

I want a new van and a proper usable wheelchair.

after that my life is in your hands.
well before that my life is in your hands.

i will await.
for your Ideas.