activist on the irish health system and expert!

it is important to say that i am an activist.

its important, important to say there are good people who are the owls and the peregrines around.

it is also important to say i am both the peregrine falcon and the owl.
my eyes are extremely good and my talons sharp, like the rat that got caught out in my garden by this magnificent beast the peregrine.

meat is necessary for nourishment, meat is vital to life, the sharpness and alertness warns you both of food and danger.
you have to be both as a sick individual in the irish healthcare system.

we have an owl and peregrine alright and the talons are sharp, very sharp.

when policy is written in ireland, its written.
it doesn't mean more than that.
we do not 'do' action very well, we can not do action at all well.
the meat seems not necessary and the bird is not hungry enough to sharpen them claws, to fine tune and stave off hunger.

the direct opposite is true of the patient.
the awareness, the complete turning of head is absolutely crucial for being sick, the talons may have worn down by illness and disease, but activist mode will keep that which is left, sharp as a knife and will wound like hell the lack-lustre.

my allegories are sharp today ann.

i am vulture mode.
we are a useless set of feckers in this country and the way we observe and also treat health is about as diseased as it can get.
why does no one at all care about healthcare here?
why are we letting the starvation of care (meat catching) happen?
its a conspiracy of the well and the affluent.

otherwise them talons will sharpen pretty swiftly if you get sick here.
its a nasty disease this one, the lack of care.
its a disease of birds flying every which way and are getting confused about which species they belong to, but right now most are ostriches, and most are flightless, eggits.

we are laying bare a situation that is frightening because we have reached that point of almost no return, when systems fail to such a degree the atmosphere hots up and we cannot claw our way back to expertise on a wing and a prayer.
todays Irish Independent shows that a lady being wooed back to do nursing simply said, 'no thanks, your backward.'
this is the reality no one seems to be waking up to in Ireland and no one cares.

did you know that once upon a time the community had a surveilance scheme for the nursing care staff in the community.
this was to keep an eye on all the elderly in a catchment area, this is no more.
instead they have a social worker dealing full time with elder abuse.
but this is a danger after the fact.
if you do not carry out surveillance you are mopping up the mess of abuse after it has occurred.

how much involvement is your primary care nurse in children's healthcare needs and at what stages of life.
well all under a certain age are watched like hawks by the nurses, then more then 800 can be on the list for part time staff or job sharing staff, they also have to do the eye testing in the schools and probably the hearing also.
they also may be involved in vaccination screening and monitering.

with staff shortages where the hell do they find the time to deal with the rest of society.
what happens when the under 6's scheme comes in, how much actual time can be clawed back in for the other vulnerable groups and not the healthy?

when we look at what we have right now its clear.
very clear.
the top of the pyramid has ordered the following or this is the way i see it as i observe, remember like the owl, the head turns on its axis and is casing the joint so to speak.

the HSE has now been told to recycle just about everything.
i heard of a case of a guy, young with cerebral palsy using a HSE frame had to go buy his own, why? the rollator lost a wheel and it ditched i guess, and the guy alongside.
this necessitated a risk assessment.
well i lost a wheel off a powered wheelchair, and i went into a wall.
i didn't even get a query if i was ok, let alone a risk assessment.
but i got an assessment of the banger alright.
it was 11yrs old, had no suspension coils, a lot of duct tape and wheels put on with the wrong bolts.

so thats the money side of equipment.
in this area we have no social worker, except for the elder abuse.
we have no psychologist except a counselling service where you get a blast of twelve sessions and then you can commit that suicide.   i kid you not!
we have no OT in this area
no OT manager, just a half a one.

we have tail chasing and crash courses, and mop up jobs all over the place.
there ain't no system at all.

just don't spend money, don't employ staff, don't answer phones, don't provide.

now this is an interesting one too.
you cannot advocate within the HSe.
that is you cannot create a fuss if you feel a client is in need, you cannot sort of say its all wrong and blah blah blah and you cannot have a meltdown on behalf of a client, you cannot write a report of your own it has to go through managers and the legal department, you cannot allow the HSE to be caught out.
you have to keep the 'family' ethos mafiosi style.
you simply lay low do that little job and do not rock the boat.
the morale is at an all time low and the pressures are great.

i am not to believe they cannot be sacked.
they can actually and they can be got rid of if they speak out of turn, do not tow the party line, that is 'whip whip' style.
you can be accused of being not fit for the job or purpose, there you go, you are sacked.

this isn't care, this isn't a health service, this isn't nice nor morally just or correct.
i laugh when i see on their websites, 'the client usually knows more about their own condition therefore you must be open to them and must ask them 'is there anything i can do for you.'
well what they say behind close doors seems to be 'do feck all and shut up and just get on donkey style and do nada'.
we have to do this, they say.

a strange juxaposition of shoes far too painful to wear as i load my wheelchair in wooly slippers and where do i load my wheelchair, at the house of power, which is over riding expenditure on healthcare.

no this isnt mongolia nor is it the buckingham palace, its the senead and a room adjacent to the bar.

we have to save on the budgets, see.

this isnt a bar stool, but i may come crashing, this my friend is my sofa and disabled people once were able to get 'sofa risers' to help them get out of them, but no not here anymore so what do i use - nhs bed risers, which my twin had left over from living in the UK.  we are seriously endangered as a species.

so do nada
again my friend do not worry too much about the stats, that is information on expenditure, they mean nothing, they are makie uppie, yes they are makie uppie.
this is being told by the universities, 'ah sure that means nothing, doesn't make sense, its all made up as they go along.

so is this a care system.
no its called the famous lipstick gloss, its glossy nothing and people's lives are in danger.
this i mean seriously, we are off the watch and people are suffering so badly it beggars belief there isn't war on the streets about the relatives and friends being so denied even basic healthcare across the divides, of community care, mental health, emergency healthcare as in A'E and specialities, and major operations and cancer and neurological illness and degenerative diseases.

 i will leave you with a piece of knowledge called 'meat' that is worth digesting because once that bit is in there the belly the hunger demands more and will hopefully pull the wool away from your eyes, sharpen the talons and grease up the neck muscles.

can i borrow your rolls for a few days, this thing is fucked?

here it is.
according to Prof. Orla Hardiman, there are more neurologists in Mongolia then there is in the Repulic of Ireland.
Now thats sort of numbing isnt it?
how many of you knew that yesterday was "international brain awareness day"  ah sure i barely did, i was conked out with exhaustion with a neurodegenerative disease so rare they haven't a clue what is going wrong.
but hey i got a diagnosis, of sorts, yes i can declare i have mitochondrial disease and i am fucked.
why, because its not what the HSE have down as a disease!
they only have the ones they know.
so this should be fun as to where we go with this knowledge.
we can forget that there is new policy guidelines now launched for Rare diseases in ireland.
i will be dead before that policy is ever implemented.  its only about how to find out where and what the rare diseases are, thats all, we are only at that stage in life for medicine, one is CF by the way and we are a country with the hightest per capita in the world.
but like 'vision for change' which was brought out as a working policy 15yrs ago, well its still a vision, like everything else.  Its gone no where but gathering dust in the NDA which will tell you all about it but wont tell you its dead as a dodo.
you have a right to fear in ireland, you really do.
i just hope you don't get too sick cos reality hits very hard so it does.

the irish 'outer mongolia' healthcare bareness

HSE LOOK WHAT YOU HAVE DONE TO ME, LOOK WHAT YOU ARE DOING TO MANY - IN IRELAND, MINISTER FOR HEALTH, THIS IS YOUR CALL

At the age of 63 I do feel ok to be the moaner and groaner on board the rocky ship, which is ‘Ireland’.

It is fine to point out a few facts regarding healthcare here

I am fine about it.

try being so sick you wake a mess and confused

Yes, my first line states ‘moaning’ and ‘groaning’

But is it?

Who is presently very sick in this gorgeous country right now?

Who is on that trolley, on the waiting lists or facing the organizations dealing with health care on this Isle?

try 'doing' pain and being left to 'do pain'

I am.

Does that make me a grand candidate to have a column here and say it as it is?

It does.

The first dose went a long way in a ‘angry’ spike against this old hag in this dear town.

I am touching senior citizen status, (I believe that is 65 in Ireland and 62 1/2 in the UK).

Therefore my twin sister is technically a geriatric, I am a middle aged woman!

We live in Ireland with a very rare disease but to get healthcare we have to prove this.

This has taken us now about 10 yrs, we have to prove what doctors say, ‘prove it’ means get the doctors to write to the HSE and say it.

No, as an upstanding citizen, I cannot hand a headed notepaper with the reports, results and tests done and defects found to the HSE, I am told,  they have been known to be ‘forged.’

I kid you not.

When a wheelchair arrives at your doorstep after a prelim test at the car park of the local HSE public health centre I immediately get a phone call to hand it back!

It wasn’t meant for the senior citizen but the geriatric.  (that’s my twin sister).

I exclaim that the company sending it had rung me before saying my name and address was on the cite, ‘Yes, that’s ME!”  woopie, mobiliteee!”

No, it’s for the geriatric, I am to hand it back.

I don’t because I am afraid of the HSE and what they will do, give me nothing.

A real possibility because we are what they say ‘in dispute’

About many things so this is very possible.

In my case it is very real and its proven to be the case already.

Also in my case leading me to brink and breaking point of landing in this town’s harbour, so much has the stress being in fighting a mafia type group of managers and overloads of our healthcare system.

I refuse then.  When I say to them it isn’t going well, they claim ‘you should have handed it back!’

But what then, what will I have, no I don’t believe they would give you something else, especially if you are ‘in dispute’ over many issues.

Try it.   Trust your instincts and you would get this right.

So when a wheel flew off the darn thing the HSE say ‘I told you so, you were not meant to have it, it wasn’t meant for you, we asked you to hand it back, it was meant for the geriatric, not the senior citizen.’

“So”, says I, “you mean it was OK for the geriatric then to go into a wall opposite St. Vincents hospital rather than the senior citizen?”

“its actually OK to give a senior citizen a banger of a machine repeatedly repaired with duct tape and finally when the wheel flew told that the bolts used to hold them wheels on were the wrong ones by the technician, what happens? I  am blamed.

Here’s how.

So afraid of the HSE (rightly so) after the wheel flew and I belted into a priest’s house wall opposite the hospital (which I saw again today on the same route to the same neurologist) I asked a lawn mower company to just secure what bolts there were so nothing more would fly.  The lawn mower company had never seen a wheelchair before, not for repair with all the lawnmowers anyway, so he did what I asked, secured what was left.

By the way the wheelchair I used to pass the hard wall today has no suspension coils whatsoever, so I feel the cracks on the road, cracking up my spine to the disintegrated spinal discs which are compressing for which I am waiting for a nerve block for pain relief.  (you couldn’t make this up if you tried.)

The HSE claim I tampered with it, that is the wheelchair that lost that wheel.

They would.

Someone has to believe this rubbish.

Someone has to write it, say it and actually believe it.

That is why I am afraid of the HSE.

Now, this is a taster of worse to come, and that I ask you to believe in.

I am 62yrs of age.

I have grappled with a rattlesnake now for over four years or more.

Grappled with a very rare and serious illness which is progressive and degenerative.

This holy town of yours is unable to provide me with physiotherapy, an OT locally since arriving here, some psychological support after fleeing my own county after being shot at.

And I now need for PTSD, which a doctor in these parts say I am suffering from.

They don’t believe how ill I am.

No one believes how sick the HSE is, but actually many do but are afraid to speak out.

I won’t be silenced in how I feel about the HSE.

getting warm in a warm place after being cold and out saying "NO" to the HSE

when we say "NO" and we say it often.

But more than that, it’s a deep and worrying fact of life, that people, many people are suffering fall out of falling foul of the HSE.

By that I mean a simple enough word, like Oliver who dared to ask, I dared to say “no”

And Yes, I will say “no” when NO means shoddy or no care in a healthcare system.

That’s what a senior citizen does, who doesn’t wear purple hats and spits and rattles her stick along railings, but rather wears a pink bowler.

i want to find that hole to hide away in.

That’s the embarrassing part.

Nothing counts, if you have not your health.

And Life is not worth living if you spend all your time trying to get basics of healthcare during a time you are attending a Hospice for the dying, no that’s not fake either.

painful realisation....

It’s a ghastly Ireland we live in, therefore I am not afraid to rattle a few bones and ruffle a few feathers, if it galvanizes thought and serious thoughts, I am not afraid, but I would be afraid of the future for all, in this care system that we have at present namely the HSE, remember that, its called wait for it, “THE HSE,” that stands for Health Service Executive.

one day attempting to revive a life again

not long after being bullied to give back the same mobility scooter that gave me life, gave me a means to do 'irish therapy dogs with maggie, and helping the blind and here saying one final 'goodbye' thinking if i made this sacrifice, maybe the HSE would be kinder to me, sorry mate, there are not being kinder.  its not part of who they are.

what more can i really say on this?

This is your service, so have your say.

I am.

MY BIGGEST WISH IS THAT THE SICK AND DISABLED WILL BE GALVANISED TO FIGHT BACK IN A DISEASED IRELAND.

I DONT THINK THE QUESTION IS A BAD ONE, FOR LIFE IS BECOMING INCREDIBLY BAD FOR A LOT OF PEOPLE.  QUESTIONS HAVE TO BE ASKED, WHEN WILL IT END.

I HAVE TO TELL 'JOURNAL.IE' THAT NOTHING HAS CHANGED, I STILL DO NOT HAVE ORTHOPAEDIC FOOTWEAR FOR DEFORMED FEET, REMEMBER THE ARTICLE?  REMEMBER ME?

ONCE I MADE A STATEMENT OF INTENT AND DESIRE
ONCE I SPOKE OF LOVE AND YEARNING

NOW I MAKE A STATEMENT OF TRUTH WITH A LOT OF THOUGHT AND LONGING -
CAN SOMEONE TELL ME IF I CAN BE ALLOWED TO LIVE AGAIN - CAN SOMEONE SEE MY FACE ON THE MOBILITY SCOOTER ABOVE WHERE THE CHIHUAHUAS ARE IN THAT BASKET AND I AM LAUGHING AS I LEAVE MY TWINS HOME WITH A PLAN, TO REJUVENATE AND SO TOO REKINDLE MY LIFE.
BUT I AM THINKING THE BIG THOUGHT
"WHERE THE HELL HAS MY LIFE GONE"
"WHY HAS IT GONE"
THE HSE TOOK IT, THATS WHY

HSE again and Ireland of the 'modern age'

many commentators may find my blog less than uplifting.
truth isnt about making people happy but ideals do.

when you can say something positive about humanity and treatment of the sick and poor and the downtrodden then we can feel uplifted and rightly so.

until then many a blog begins pretty much in the same way.

Lets look at this slightly differently, with maybe less of the moan, more of aspirations, hopes, chances and change.

it is about wish listing.  It is about accountability and taking charge, taking responsibility and 'sorting the mess.'

this goes without saying.
media now is reporting daily abuse in all our centres for vulnerable people.
its hard to feel uplifted if change isnt coming.
I feel further investigations and enquiries are one thing, they also cost a lot of money.
but education, more educated and more populated places for the care homes would be the better way of spending money.
also the need to sack managers and wrongdoers instantly without question has to be the way to go to stem the tide of constant abuse.
very few are being 'shown the door.'
and less at the top are being sacked, most of what we hear in recent months are sackable offences, closures until messes are sorted and someone owns their own responsibility to sort the mess, throw out the abusers and bring in a staff that actually want to do some caring for a change.

education too is important because you know most with a disability were either born that way or acquired the conditions they have, these were not inflicted through malice, but rather through love, therefore we have to honor the love we committed to in bringing a child into the world for better or for worse.

most cases of mishandling within the HSE takes an interminable time.  arguements and denial go on for months on end, entreties to people to help is met with the statement of lily white and stock answers to all.
the adeptness of this is huge.
they themselves have learnt well to cover their tracks and behaviours, so this endemic response is another aspect of the HSE that they must begin to stop.
instead of doing this, protracting the course of solutions through denial is in no ones favour and expensive for all.
a lot of people become involved in each case and its like a rolling stone gathering moss.
more and more people are in this 'racket' of shoring up each other.

to bring a bit of sense and hope to it, i really think ireland has to consider how procrastination in decision making holds us back to be in a better place.
also to consider that making excuses are seen as just that by most, making excuses.

you usually cannot cover up wrongdoing no matter how much you try people usually are sensible and either laugh on the sidelines or get angry too.
but most of all for vulnerable people who need a lot of changes made in their lives for happiness and health are losing valuable time to engage in a type of quality of life that the HSE talk about within all their websites.

i have found it shocking some of the stuff they put up as 'policy' because its a lie, facing the world through the internet with the diatribe i see, is lying to those who may in the future consider Ireland a home to be living in.

i would rather people know the truth about healthcare.
it is becoming a known fact here in ireland that its not sustainable, its not safe, indeed its very dangerous and becoming more so.

telling the world we are a great little country is one thing,
showing rolling hills and valleys is not showing the rolling stones gathering moss.

its not showing the deep levels huge institutions will go to and actions taken to avoid one thing - owning responsibility, changing ways, and changing lives for the better.

this is what healthcare is about.

quality of life is everyones wish.
but trashing a person down so low that the depression on waking daily is so terrible you wish you were dead or didnt have to face more of the same and unfortunately the writer of this blog has faced this now for well over a decade and i am not getting younger.

i want to feel hope and feel that i can live again.
i want to feel that blogging anger and pain and the truth of the politics of healthcare in ireland can change to dialogue about maybe the arts, film, and the creative use towards everyones life, including my own.

its a better life to be doing that.
this is not chosen as a burning drive to inform, its chosen out of the hurt, pain and damage the treatment of the HSE towards two sick and older ladies has caused.
two women who wonder if they are able now to get their lives back into shape.
has far too much happened for them to pick up their lives and live again or will trauma led the way to the grave.
one two institutions can decide whether the triumph and hope of two women who are well in mind can be a part of society again, as they wish to be and how they wish to be.
they must decide how quickly they feel we deserve this and how they can redress what has happened.
they are now the HSE and the Irish Government.
both must decide that treating people badly is never something that will go unspoken about, because always it will be heard.
as in this instance.
no one in their right minds would hold this in as acceptable.
the people who want to make changes to the dynamic of change within ireland healthcare have the duty to speak out on abuse, damage hurt and wrong doing.
this is called Civic duty to show they care by speaking of all they know, if its wrong it must be heard and put right.

this is called a modern society caring for all.
i am waiting, waiting for a lot of changes to the Irish healthcare system and also i have to say for a deep change in thinking about the least able, who no, didnt bring down countries, but who are here because its about human beings been born daily warts and all, and all have a purpose and intent.
its not a judgement that the least able are actually worsening the lives of the rich and middle income bracket, its the opposite, the rich and middle income bracket dont care enough about the people most vulnerable.
the angry cry to become motivate and move a mountain is one i place on everyone who reads this blog to do.
engage in wrong doing and put it right through protest its the only way when no one wants to be shamed into how they work.
we must protest wrongdoing to vulnerable people every where we see it.
duty

HSE corporate plan, vision, programme, policy er, more of the same?

Analysis of ‘the HSE Corporate Plan 2015-2017’ and ‘the six step programme.’

I picked up the ‘Health Matters’ magazine, (Summer 2015 edition)

I note the following people are on the 'six step programme' where "the HSE plan is to keep the Service User at heart of all it does".

This 'Health Matters' magazine is for the professionals, we do not get access to this, other than when it’s lying around.

The panel includes you M and also MM , MMM and also PP. There is too SS

All of whom I know.

MM is the 'service user representative’ that is sweeping, for I know him as a disabled person, not representing me per se, so how does he represent the Service users?  

The fact that MM has always been at the helm in this area and who never speaks to my twin and myself, who refuses to, is she also keeping the Service User at the heart of what she does, this woman has been overseeing our care, which we describe as four years of  "HELL ON EARTH"

Make no mistake about it; it’s been hell on earth.

We have implications all across the board on transparency with the make up.

Dear M, I leave you out on this as too PP, but certainly the rest I have known to try and get help and none have been forthcoming but all have been positively obstructive and in our terms, abusive and causing damage, physical and psychological leading to decrease in health, care and increasing trauma to such a degree I fail to sleep at night and have not done so for four full years of this hell, none are well meaning by any stretch of imagination.

Pat Healy The Director of Social care states we must keep at all times the Service User at the heart of all it does.

This is supposed to be what has been happening since the Social model of care was adapted in 2005/7.

We are supposed to have a part in our own care.

The problem being, we have it in principle and then when the HSE is 'found out’ it promises, to repent and be good little men and women.

Is this six step programme new from the Social model or more of the same, meaning, paper taking ink, or what service users consider lipstick and gloss?

I supposed the biggest failing in convincing myself (for which the magazine is not aimed at) being the Director General's piece at the front, the intro.

A beautiful piece of scriptwriting, but not HSE policy because as a service user, this too is on the Patient's charter, Fundamental Rights, the Disability Act 2005 and now the Six Step programme not to mention we are instigating the new Draft plan for disability services, when we have one already in place which has never been implemented and took ten years I believe to get to that point and now we are having another consultation process for a new draft plan, which will take me up to my death possibly and still not having something stated as policy fifteen years ago never implemented - the Social Model!

You look at all this as an intelligent individual and say to yourself:  'do they really believe this stuff?

Or, 'do they think, really think we came up with the mushrooms?

So back to the beginning on the Corporate Plan 2015-17 (is this also a new plan apart from the social model 2005, the fundamental rights, the Barcelona accord, the Draft plan never put into place and the new draft plan to be under the consultancy process of all disability groups not to mention the six step programme and now the Corporate Plan 2015-2017.

We have come up with the mushrooms!

'We need first rate health services available to people where and when they need them.  This plan acknowledges the need to provide people with the best outcomes possible, as this is what they expect and deserve.  It is also what health services staff wish to provide.'   For centuries now, this has been the ethos of healthcare provision, not only in Ireland but the whole world.

This equates to giving every healthy child under six the access to free healthcare when every person over the age of 70 who ALWAYS have healthcare needs do not get this at all, and far from it!

This is actually where and when it is needed, that is services available, with of course minimum costs and tight budgets.

So the healthy get it first not the most needy, which is basically what this means or is a contraction in terms?

The next staggering quote and paragraph in this same piece from the Director General is I quote  ” A healthier Ireland with a high quality service for all” states simply what we want to achieve.  I recognize this is an ambitious vision.  There is a gap to be bridged if we are to achieve this vision. And in reality there has to be this gap as the plan is about what we want to achieve in the next three years and not where we are at today.'

There should never have been a gap, How did this gap occur, it certainly wasn't a sinkhole suddenly appearing.

It was created and caused, up to the present day and increasingly getting worse.  We know this, we see it in action.  Its happening and its unstoppable.

Ok, we had another vision at one point...it was called 'vision for change’ how long ago was that for the mental health services?

Yes, what happened that vision, this new vision is for three years time, that last vision was I think has been ten or fifteen years still a vision, but that vision was given seven or five to be achieved, vision is still a vision, and we are still speaking of having to change thinking about mental health, sure I thought that was what 'vision for change' was about, cos I participated in the formulating of it, as of course a mental health service user!

What more, the mental health budget per capita is going down and down.

It was last year I believe, the whole budget for mental health was absorbed into the full healthcare budget and not kept for mental health at all!

This is called 'robbing peter to pay back Paul.'  Absurdity isn't in it.

I have not come up with the mushrooms to believe that in three years time (when I hope I will be alive) to see a healthcare realized and not just a vision as in 'vision for change' the first one, for the second one will be exactly the same.  This isn't visionary, it’s delusional.

To achieve this Mr. O'Brien states is 'we have to rebuild relationships, truly engage in reform and service improvement and have trust that things will get better as I believe they truly will.

How are we going to achieve this we ask Mr. O'Brien, who answers this in the next paragraph, its called  'the Mission statement' which outlines how 'we can accomplish this vision.'

Here it is:

The values of Care, compassion, trust and learning....

This isn't a new Mission Statement I would argue.

Its what is taught (learning) in every discipline in every college of higher education teaching the disciplines and has been there since the disciplines have been devised and developed, I name medicine, physiotherapy, occupational therapy, psychology, psychiatry, and far more besides.

You enter healthcare to provide care.

It’s a mission statement in itself.

So how is it now we need a value to the mission statement which is call 'healthcare provision’ its there in the name itself.

You have lost all this because of burocracy gone mad.

You have lost it because you chose to blame the patient, the client and just about everything and everyone bar yourselves, for sure you have this love for all of us at your heart, the core of your calling.

They say trust has to be earned.

To date, and only in recent years have I lost it.

But these years we were already working under the Social model and the Patient charter and the Fundamental rights, so if we have all these as principles and basically  'mission statements,' how did my trust leave me, because they construct the model according to their own ends, not to mine the client, which is what the mission is about and the mission of 'the social model,' 'the patient's charter, and 'the fundamental rights!'

Mr. O'Brien, to me is speaking to an audience not to me.

The relationship I have with the HSE couldn't be worse.

It is a violent one.

It is not benevolent and bears no relation to the ethos of what the workers in the healthcare services are supposed to be trained in, caring, please see mission statement of the six point programme ' (care, compassion, trust and learning).

We have a system intent on making the patient/client appear the instigator of dysfunction rather than the other way round!

We have the healthcare providers which maybe Mr. O'Brien is speaking about on the level of managers etc who are being now trained or should have been trained to be that builder of relationship actually breaking it down and breaking it down by breaking the clients and patients down.

This is far short of 'the six step programme 'keeping the Service user at the heart of all it does.

I wish to remind Mr. O'Brien that maybe its unwise to use a six step programme which is half the twelve step programme for recovering alcoholics, and as their twelve steps programme reminds all, that once an alcoholic always one!

"We will try to live our values every day and will continue to develop them over the course of this plan"

So what happened 'Vision for Change"  "the Social Model of Care'  'The disability Act 2005’ the Barcelona Accord, the Fundamental rights and the Patient charter?

We should also remind Mr. O'Brien, it’s a bit like confession, we promise not to sin no more!

Who was found out on that one?

Each value is defined by statements that explain how we can recognize, demonstrate and live these values, it is essential we work together, determined to try our best to live and practice our values every day.

They taught similar in the seminaries.

It takes a lot of points to get to most of the medical courses now in Ireland and it has done for decades, yet still we are having to explain in baby steps how we actually do things, such as 'keep the client at the centre of all we do.'

Its sort of basic I think when we are in the health caring professions, or have the services, "lost the run of themselves, or lost their way or missed the points and came in the back door?

It does get better I think and we see real hope towards the end of the monologue from the Director General, here it is:

The corporate plan envisages significant changes across the health services by 2018.

These changes will include:

Creating an empowered and accountable health delivery system through the establishment of the community healthcare organizations, the Hospital Groups, and the reform of the Primary care reimbursement service and the National ambulance service.

Building and designing models of care, which are patient-centred, evidence-based and clinically led the whole service.

Can we take one of these to suggest a point - Primary care?

Primary care as a concept is new, but not that new, so its relatively new and now we are talking about reforming it!

In my area we have no Adult psychology services - in the community, no social worker, for disabled people, no OT in this community care area.

Why?

And the post for psychologist has not been filled because of the embargo on recruitment.

We have no OT, I guess for the same reason and no social worker for the same reason or because there isn’t one anyway to fill it.

They have all jumped ship or asked to take voluntary redundancy, early retirement and whatever.

Reform is the operative word.

So you dismantle an organization so fast over three or four years and then speak of reforming it?

You tire of this.

It does take some longer to tire than others.

It didn’t take me long.

To dismantle me, my trust and my care has been an earth shattering traumatic life changing event which took all of three years, most of that in one area alone namely greystones.

This is testament to what happens, Irish style, to an individual, in Irish healthcare when they are sick.

CAPs used instead of names for confidentiality reasons

the twins spoke out at the Ist Assembly after that wonderful event

we were at Ist Assembly in athlone, afterwards we were interviewed in a relaxed manner in in pantomine gear!

we have a real message though:

http://www.irishexaminer.com/ireland/video-sisters-have-lot-to-give-despite-condition-336924.html

IRISH HUMAN RIGHTS AND IRISH HEALTH CARE PROVISION - HSE- DUTY

it has been far too tough

Those who are honest and brave, will never go away.
those of us who care are equally unable to stay silent or disappear.

those who feel utterly tortured will find that voice to speak the truth.

this leads to being hated.
it is the net result for speaking out.

the type of hatred in this instance is cruel, vindictive and unwarranted.
to say a few truths about ones own health care should be met with acceptance and solutions because a health care system based on sick people is a healthy health care system.

this is the face of a sick woman they left at home for years before she had to flee her country to seek out proper medical care

again, try this for over two years before managing to get to UK for care as inpatient

one based on utter demonising of an individual for both being sick and loud is corrupt.

How it came about in Ireland is any one's guess.  My guess is we as a nation 'hate to be found out'
we are small, lack the gravitas of major more populated states, we lack belief in ourselves and confidence.
when you lack these things then you slither in an attempt to hold face against (as a nation) the world scrutiny.
we are after all 'the land of saints and scholars.'
we are neither.

We are on the verge of being questioned about our Human rights towards the vulnerable, the sick and disabled.  towards the low wage earners and the poor and homeless.
the voice of strong clout has spoken out, Emily Logan Human Rights Commissioner has been saying it a long while now.
Austerity measures cannot under EU law deprive those least able to afford anymore cuts to their ability to have a basic standard of living and care.
what Ireland has done is exactly this, it has broken this law, this EU law.
we are in effect violating the code of Human Rights ethics and we can claim to be the good ole christian for ever but to be vicious towards the least able shows a shoddy country at work.

we must uphold decency even in the face of hard times.
we cannot be cannibalistic just because the economics of our country goes down and goes down through greed, none at this level could have had an effect or dint in the finance, high finance of Ireland but we are paying for it.

Emily Logan also pointed out that the Disabled groups suffered the most in the past many years now of Austerity as we see our cost rising alarmingly and our inability to act even as a basic right to move about in the community, participate and be an active citizen worsens by the day.

Many of us and my twin and i can exemplify this effect of austerity on a personal level and personal life.
we have been taken to the lion's den and butchered.
there isn't an easier way to say it.
we have been slaughtered.

it is nothing short of evil to demand this scooter back when it was giving me quality of life when so much had been taken from me already -

giving up my dearest friend was the hardest thing i ever did - i was bullied into it by our HSE.  this machine was taken from my home by a man who danced on it as he drove it to the pick up van and into the hold, danced on it showing off his glee in expertise.  i watched my beloved being taken from me - after just paying out 450e to mend it.  EVIL HSE

ANY health care system that denies sick people a means to mobilize in the way they chose so that they can smash out a piece of enjoyment for what time is left to them violates Human rights Law, codes of ethics and morality.
Any health care system who denies a sick person a suitable surface to sleep on when suffering a chronic pain complex and muscle wasting is evil, for sleep deprivation is torture and isn't allowed as a means of extracting information from prisoners or criminals.  what the Irish do is turn a blind eye that i cannot sleep on the awfulness of a surface no one has tried to sort in all of four years i have begged for help.

i fought to save this bath only to find the HSE would not provide a means to use this therapeutic aid and with snapped shoulder muscles i have to slider down using grab rails monkey style, instead of easing pain then it increases it and creates further damage at the base of neck, shoulders and spine, HSE is wrong to have been so vindictive.

to deny too a person with snapped shoulder muscles a means to lower herself down into the water of a warm bath to ease her pain, dystonia and insomnia by the throw away remark that 'its your fault you have that bath' is again violating the ethos of care, this is health care not some other department in our state.

when others say in any defense 'why should they provide'
i will tell you why, because its in our law and statute books that they will provide for the least able through a public health care system!
we have no other.
there is no other.
you cannot in Human rights terms just throw away the key!
you uphold European Human rights law, you uphold the WHO dictates for sick and vulnerable and you uphold the UN charter for the vulnerable groups throughout the world.

if a tiny country such as ours, feels its OK to gravy train the money out of health to another jurisdiction and banks and leave their own to suffer i suggest they just hand the full country and its operational guides back to where it came from, because we seem to not be able to manage our citizens in a decent and humane manner.

we are no longer the land of saints and scholars.
we are descending into that pit of corruption that is endemic now around the world.
people just do not seem to care anymore.

but personally speaking, Ireland cannot claim to be the good country it is when the truth is out and the voice of those capable and brave enough to exclaim 'the emperor is wearing no clothes' has been heard.
i want to see more of this bravery.

but to be honest again to be honest.
what happens a good person who cares enough?
What happens an honest person who is good enough to voice concerns over abuse?
Abuse so endemic in Irish terms.
Abuse is riotous, out of hand violations against the sick, the poor, the vulnerable and the disabled. Abuse make U the least able for austerity.
Abuse has broken our FUNDAMENTAL RIGHTS and we experience violations against human decency, professional responsibility.
There is LAW.  WE HAVE  human rights law and Human Rights is this country, we claim we adhere to these and uphold the policies and directives internationally.

We who are honest are punished and this has been the case.
Name calling on files.
Slander
The HSE LIE, are slick and adept at 'cover up.'
 we will shout from the rooftops that lies have been the lynch pin and methodology in the ways a large institution such as the HSE operates.
it is soulless and similar to the Mafia.  their way is equal.   If you do not honour the 'family' you will be shot and those who speak against us will be shot down in the street.
we are effectively doing this to people who stand up to the hse.
we have NO HEALTH CARE ETHOS of care in Ireland.
simples.
and the answer for change is simples too.
you sort one problem and move on to the next.
not neglect one and have years of emails, letters, phone calls reports, answering questions, legalese, and more time wasting because that is money wrongly spent to be crass about it.
to sort a problem is the honorable way to treat a person.
not start down the road of vitriol and attack of them and a barrier growing of self defense in the face of the indefensible.
We now have to answer serious questions on our Human rights in this country by Europe this month.
we will be asked how we behaved in law and in actuality and we will be asked why we did what we did to the less able.
we will be asked why the 'convention of rights for people with disabilities' has not been ratified in Ireland, and Ireland remains only one of two who has not done so.
we will be asked how on earth can a country operate against its own citizens in such a vile manner.
and if truth is needed for this  ask my twin and i about this truth.
we know about this.

THE MAD KENNEDY TWINS WHO HAVE THE ABILITY TO SAY IT AS IT IS - IT IS CALLED
'OWNING THE TRUTH'
'SPEAKING THE TRUTH'
'CARING ENOUGH TO SAY THE TRUTH'
'HURTING TOO MUCH'
'PRFOUNDLY TRAUMATISED -FOR
'SPEAKING THE TRUTH'

because i believe we are brave enough and possibly MAD enough to say it as it is.
Irish clothes on in the fields as good only, but we are naked in abuse of power always and we have been for most of our existence, we seem not to be able to turn the country around, to what the perception of it is, 'a land of saints and scholars'

there is one morality and it is this, each person has a right to life.  when we are older and sicker we still have a right to life.
we do not have to be abused in such a vile manner.
we do not deserve it.
we are like your family - i say to the HSE managers.
we are no different.
we just happen not to be as advantaged as you.
we are beholden to you for our basic care.
what we feel like is fodder to be walked all over.
---------------------------------------------------------------