Monday, August 14, 2017

most basic right and need - is to sleep

 basic rights and need of any human being is to be able to sleep well.
Most of course do not succeed.
Most will give themselves every opportunity and set up in order to achieve a human right when the body repairs itself and sets one up for the following day.

this is even more important if the body is ill, chronically ill and disabled.
those of us who are so, need our 'beauty' 'health providing' sleep.

it is when we sleep that the body repairs itself of damage, decay and battle.

what if the night is the battle ground as well as in my case.
five full years this battle ground is both day and night with the healthcare provider.
IT IS SOMETHING YOU CANNOT EXPLAIN, JUST LOADS OF FOAM THROWN AT ME.  THATS ALL - ITS CALLED 'FLINGING'
lets say, most provide themselves with a good bed and mattress, its a given you all want to sleep on the best for the 'rest.'

i am no different.
the only issue being the HSE took all my assets by their mismanagement of my case.
therefore when all the savings i had were used in fleeing a housing situation from hell (which never should have happened) i have become more beholden to the state for every need, including the bed.

i prepared for my future, in the sense i never envisaged what did happen and i never thought i would be penniless.

thus is the stuff that they take and so they do not give a damn that this has happened.

i squarely tell the HSE, if they had left well enough alone i could have been fully independent.
i am now not so.
i am dependent.
and that also includes providing for a sick body.
i flung the last item back in the health centre, i was at wits end.
THERE ISNT A LOT YOU CAN SAY ABOUT THIS LOT.  JUST A LOT OF FOAM, THATS ALL AND THATS IT.
the thing they flung at me to sleep on is not suitable and never was - yes they have given me similar, so similar that they have 'in stock' two types of mattresses for the sick, air beds and foam toppers and mattresses.
these do one thing only, relieve bed sores.
something i am unlikely to suffer from as i trash like hell in my bed.

so they give me heat creating surfaces, that are ill supportive and painful and do more harm than good.

i do a small video today.  i place it here to show my mood, it isnt good.
the frame of a very small hospital bed is in my bedroom, there is no mattress and there is no body lying there.
i am taking up space elsewhere on an equally bad mattress but certainly better than the one given to me by our healthcare provider.





Wednesday, July 26, 2017

the little people - the enemy of the state - IRISH HEALTH CARE

The ABC or the ABC and DEF of Healthcare and HSE

so sick in ireland
I contend that to understand the crisis of the Irish healthcare system it is mandatory to be poor, vulnerable, a woman and single or have spent a dash in psychiatry as a patient.
All will qualify you to understand the Irish systems we have at present and indeed getting worse.

You only need an extra tutorial in having an Insurance policy that is next to worthless but it will teach you a little extra that adds to the PhD.

Lets be fair to the Public health care system and say the crisis is not with the public.  That is, the vulnerable, poor, sick, single, female or those with a smash of experience in the psychiatric system.

Lets be fair too, it’s not the fault of the Private Healthcare system that they too are under pressure.

I wish to place the blame first so we get that out of the way – and thus pave the way for the ‘voice of the expert in all of this – the poor, sick, single lady who once spent an errant jaunt in the mental health system of Ireland’ (which also requires a lengthy tome in its dysfunctionality).

The blame is governance and inequality and a certain belief beyond which we seem unable to go.

Governance has to be blamed for if it was good, we would not have such a crisis and such a mess.

I also put squarely the blame on allowing the divide to exist or co-exist of inhumane inequalities in the rights to having healthcare in the country where the constitution claim we all as a nation have equal rights, yet we do not.

There are no equal rights.  It isn’t there and there is no legal structure in place to say we have the right to healthcare at present.

You can have healthcare if you are wealthy and the rest is by a sort of ‘stroking’ and discretion.
Be wary though of upsetting the consultants, they have the full power to deny your fundamental rights to having anything at all, and they will make you sweat for everything despite a tad bit of lick arse.

The divide between public and private care is huge, but now increasingly the flocks once in the public sector are swamping the private sector.

This now leaves many of us with no place to go. It is also made wider with the ability of Insurance suppliers demanding exhorbitant monies for policies riddled with loopholes and ‘get out’ clauses for the care you need.

We should never put in place a means to get healthcare by payment alone.
The country is not a wealthy one per se and I see this as a cohersion by the state through fear.  We have every right to be fearful.
To say if you can pay you will get healthcare falsifies the principals, which the state was founded upon.
The country a republic, was for all the citizens of the state.  We had been through oppressive oversight from superior empire state control.  We recognized the right to be free.

Yet we, now, do not recognize the right to be free of inequality.  We do not see healthcare as a republican ideal and nor as refusal of freedom from oppressive oversight.

It is NOW mandated that unless you have money you will not be cared for in this state of the Republic of Ireland.
If you are vulnerable, female, single, and poor you are open to abuse which is a societal tactic the Irish are so well used to by now having been abused for centuries before the foundation of the state.

We cannot yet call ourselves free if we cannot ride ourselves of the culture of abuse.

When we have waiting lists for a consultant leaving sick on lists for years some lists touching six years in fact before you face an expert we should know we are in deep trouble.

When we see that if you can pick up the phone give over your insurance policy number an appointment can be arranged at best within a week or at worst within a month.  We know we are in trouble.

The idea you can use austerity as the excuse that cuts have to be made is also erroneous and wrong.
If you cut healthcare now you are shoring up even worse physical and mental health problems in the future.
Each person ignored and denied healthcare will get worse quicker and some do not get better if left too long, at all.  This is a burden on the state but has been sanctioned by the state.  The state will eventually pay out far more to support these very sick individuals sooner rather than later and more so rather than less so.
This, the state has been informed about.
They know what they are facing by the lack of healthcare now and the crisis we have allowed presently means all this is to become.

The biggest fall out to the crisis of healthcare has been to the individual sick.

I class those at risk being the vulnerable, isolated, unsupported mainly single women and mentally ill as being particularly prone to being virtually attacked for being sick and demanding of health care and requesting their needs be met.

Countless examples of abuse of power can be named and documented through articles we see daily on disability forums, online journals and through other paper media.  The litany of abuses are rife, and you will find those subjected to abuse are the category I name alongside the intellectually impaired.

There is a great degree of ‘cherry picking’ now within the confraternity of the consultants base.  They can and do without sanction, dismiss a sick person for being demanding, demanding to have personal needs met and their own personal healthcare put in place.
In a structure of chaos mistakes are being made daily in the system and wise patients staying on top of their personal file can see where mistakes are made and if they are serious will mean you face the consultant with these mistakes,  you are then subjected to prompt dismissal and labeling and abuse.
These are all tactics to protect the powerful against their negligence and their need to keep a well paid job and do a job unhindered by the pesky plebs.
If they do a bad job there isn’t anything you can do we are rudderless through legislation for our rights.

Again we have no legal structures in place to face a very powerful body of men usually, who do bad things against the innocents in this state.

Within the structure of healthcare we also have a very close knit community of specialists and they have the means to process information which can be subject to deep suspicion from the client base.

If you are personally wronged, and you face the consultant they can pick up the phone and lambast you to anyone.  Its proven the bad blood built up between sick and their doctors is one which should never occur but does all too regularly, simply because you ask to be cared for, the system is chaotic mistakes are made and the system is chaotic there are no rules anymore or guidelines or doctors to deal with it all.
Mistakes should not be made, there should be a mechanism to resolve painful issues of relationship dynamic and all move on to greener pastures.

This doesn’t happen.   There is no mechanism to allow an easy working bond between patient and doctor in Ireland.
It is wide open to vast abuses of power and there is a gulf of ‘them and us’ I have not seen in other countries at all to date.

The culture of ‘tell all’ to your peers here is huge.
Anything can go from the lowly small time pros to the big shots at the speed of concord and so a single lady very ill can be perceived in a shot as a person to be avoided.
No one will ever believe her.
They tend to blame at a rapid rate, the usual culture of abuse so very easy to use, so readily instinctually drafted by genetic processing down the generations of abuse by others visited upon the Irish state and mentality.  Oppression was viewed then as being so well done by the british we have adopted it.

We have allowed the abuse of power seep through the pores by osmosis and allow it to be an acceptable tool to oppose your little worthless patients and it allows alarming power.

The level of power now of consultants is huge.
In fact this power is so great not only consultants have it as a tool but everyone in the health system has it.
Backed against a wall of dysfunction there is no tool left for the state to use other than abuse the power they hold over the citizens.
fighting back is the only way

It denies us any rights to fair practice.

The human rights and equality commission has been decimated of personnel and function in recent years.
We have no real human rights for those who are disabled and sick.
There is no legal framework to fight abuse
We have not even got this fully enshrined in the constitution.
You cannot face them in any shape or form, nor can you go to the courts and do it either because the court system is also based on money and ability to pay for the justice you deserve.

You cannot go to Europe because they require you to exhaust the avenues open in the state of origin, but if you cannot use these as the first steps you cannot use European laws and no one here will assist the poor to do so.

We have now in Ireland a state that allows a basic ‘free for all.’
Over and above those who are secure knowing that they can walk in and get help because they have power or money the rest can rot in hell and considerable pain and anquish with no quality of life at all.

It doesn’t even work in the private sector either because having a policy is not necessarily a safe guard that you will get the help you need.

The policies are wrapped around ‘add ons’ and ‘exceptions to the rule.’

You may be able to afford the famous policy but cannot afford the consultants fees and can only get back a certain amount, or may be restricted what your policy will cover.  It’s a very cleverly designed document allowing the insurance companies to maximize their gains allowing them the right to minimize their costs offset by the cost of the policies.
They are racking in the money.

stats will show where we stand and its not looking good.  It is becoming harder and more chaotic

the stats say it all, watch out for holy ireland in these, expert documented stats
This country is not being served well by this awful divisive divide.
It doesn’t work.
It will and cannot ever work.
once we were happier, hopeful and engaged.  at my twins conferring for doctorate i see her being bullied and butchered by the irish state healthcare systems. This is not what she was used to in the UK, ever.
I can tell you for sure, she doesnt think it fortunate to come home to the country she loved and left 45yrs to abusive practise and a terrible dangerous healthcare system.  she has instant regrets about coming back.

Health is one such thing that cannot be a commodity or a money making racket.
It has become an obscene racket and at any cost to state, power, abuse, insurance, economics and dynamic.

It doesn’t serve best healthcare.

People like myself go through life on the edge.
You are very sick and powerless.
You have an insurance policy and yet it gives you little and you can use it infrequently.
You have to rely on a public service which is discretionary and you can be years trying to find a way to even get a diagnosis because consultants can withdraw the ability to allow a diagnosis if peeved by their patients, see above.

left to lanquish in pain, forgotten and poor

not a figment of imagination, you feel it and spot it instantly.
This has now occurred for two women facing a consultant with his faults, his mistakes and his lack of interest.
you seek it here, you seek it there, you seek it everywhere.  at the end of the day a grind of a fight for medical and community healthcare services is taking its toll on us two.  this is nothing short of neglect and abuse.

you get through one  but face another around the corner and another never ending fight.
It means in essence he couldn’t care a toss and its no more than a paper exercise, he wants an easy life, make money and move on.

You are but a speck in his eye.
There you will remain.
The bond of trust long gone in Irish healthcare by two women in wicklow.

Ireland is sinking into an immoral depravity and we all see it and feel helpless.
All the scandals of the day are laid out in plain lingo from the Gards to the mother and baby homes, Irish water but never healthcare.

permanently tired of it all, but with great company

you are barely able to function at time so harsh is the trauma.  comfort comes in small parcels, furballs.
We have been squashed in protest.
We feel imbeciles to protest.
We feel feeble in protest.

The people have been crushed.
They are now accepting the crumbs from the table because there seems no answers.

The only answer I see to the collective response of abuse of power and inequality is through protests and civil disobedience.

The poor people of Ireland ejected the greatest power of world dominance the Imperial state of the British Kingdom, we did this so we can do this too.
some kind of bird of what?  as i trawl the darkness in the corridors at night in a strange hospital.

We are not feeble in thinking.  We have great powers of persuasion and we are cute as the devil.
We are so cute I tell you we can persuade someone to believe that possibly the greatest kingdom that ever lived is that of the Irish ‘land of saints and scholars’.

there is a madness in your head, the despair thats in it.   There is a madness on the heads of those who rule and there is a stuffed icon of Irish in the hilarity of pretence, we are but stuffed.
Scratch the surface we are neither and never were.
We were poor, we were dirt poor, we survived through a system of leeching off the one even poorer or buttering up the one better off then oneself.

Either way we got our way through devious means, and we continue to do this at the highest levels.

The problem is, when downtrodden and sick its hard to fight that hard in modern times and powerful influences.

We have lost our moral code and ethical beliefs that all people are equal and united.  Some definitely count now more so than others.


you were a mess when you came to london last year, the consultant reminds me. this after my first 'out' he noted i had improved but declared i was a walking wreck so sick was i.
my first 'out' under the E112 gave terrific first diagnosis and furthered the knowledge of what is wrong, but still no definitive answers, such is the journey of those with rare diseases in ireland and the awful battles we have to go through
lighting up the light in our three weeks state at a major hospital in the UK, still more work needs to be done they say - ireland ignores this advice for the past two years.
the singing ambulance man in a top centre of excellence in London UK


it is imperative you leave ireland to get the help you need, what if you are stuck and cannot get out again?  our situation right now is Medical entrapment, emprisonment by the state consultants.  we cannot get out at present - another fight, daily grind of fight

in a UK hospital in a bed opposite myself is my identical twin, our need is the change of the diagnosis, which is our right according to the medical council of ireland but that is not what the consultants believe.  we do not enjoy medical imprisonment in a state that doesnt care a toss.

We are moving and shifting to a dangerous place.
We are moving away from the common good to the common bad.
We are moving over a precipice and it’s not a pleasant and easy ride.




Friday, July 21, 2017

Public v Private Healthcare in Ireland - the great divide

Galway University Hospital did not get the seal of approval from any of its working consultants there, deemed it dangerous.

wexford thousands are on a waiting list for 6-9yrs to see a consultant

over 150 doctors are upgraded to consultant status, even though they are not qualified to be at this grade.

Ann is in public healthcare and has a story - her story.
its an extraordinary position to be in.
aged 64yrs i have been seriously ill now for most of a decade.
i have a progressive neurodegenerative disease process which is rare, it has no name and yet visible deletions on the mtDNA have been found and alongside this many other issues have been found.
I suffer the following:
Hypothryoidism
CRS (congenital rubella syndrome)
severe/profound hearing loss
Glaucoma
Macular degeneration
Dystonia
Parkinsonism
Myopathy
Crohns disease
Gluten intolerance
Raynauds
Sjogrens Syndrome
Menieres disease
Pes Cavis deformity
Rheumatoid Arthritis
Oesteoarthritis
Gall stones
Kidney stones
My guts are failing and on nerve stimulant
Dermatitis.
I have had one stroke 
(no one told me i had this in 2013, i only discovered i had when looking at hospital notes through FOI)
Ovarian Cyst (no one told me that either)

Comments made through the public health system and its consultants:

"You don't have parkinsons disease, you just want it."  this after a positive DAT scan.
"i am going to do tests and PROVE nothing is wrong with you."
"a movement disorder from some past trauma."  (they mean here a psychological event causing a psycho-physical result, rubbished by a top Irish female neurologist when she heard this comment, thankfully!)

I have had consultant not treating me as inpatient for a week until i was psychiatrically assessed.
a consultant letting me out of hospital after a three hour surgery, major surgery for crohns disease with an infected wound, bursting three days later.
3am this wound burst and a big wad of cotton wool plastered over the gaping wound, 6pm the ambulance came for me!  i was in an old people's home, i was 47!  no one would give me after care in the family setting.
doctors walking out of the consultation room because you ask to go to a discipline recommended in the UK centre of excellence.

now lets look at care, yep.
CARE!
I have no neurologist.
I have not seen a rheumatologist in over a year and a half, i have had a major flare in that time and had to get my knees aspirated when i drove myself to a hospital so ill that after a week everything 'blew' my knees swelling horribly.
most of my teeth are now gone through decay through gum desease brought on by sjogrens syndrome which was not diagnosed for two years in ireland and only diagnosed when i managed to get out of ireland.
NO neuromuscular tests have ever been done in Ireland.
recommendations for further tests on muscles have been made two years ago to the Irish consultant but nothing has happened.
recommendations for:
hydrotherapy
ongoing physiotherapy
neuro-physiotherapy and guided program by such.
neuro-physiology work up
intensive work on muscle strengthening, gait and function
Botox advised in the UK not done
Psychologist advised by neurorehabilitation centre in 2009, only recently received - 2017.

wiped off the lists of these disciplines:
gynaecology - even though i have an ovarian cyst and fibroids
ENT - even though i have menieres, chronic mastoiditis, deafness and persistent ear infections
refusal to be sent to an Endocrinologist, advised in 2011 and still not seen by 2016 but went privately to be told thyroid replacement not stable, it has taken over a year to set a replacement dosage that will stabilize the production of hormones.
ill fitting shoes provided for pes cavis, causing toe nails to be ripped off, fall causing fractured rib and also two complete tears to my shoulder muscles, inoperable.
i have troubling symptoms requested to be investigated in Uk getting worse.
i believe its Vascular.  A recent public consultation when finally getting to a top specialist in ENT surgery said the symptoms were not caused by my menieres or mastoiditis.

do i actually have any medical cover right now.
No, i do not.
i have good cover for my crohns and guts.
That is it.
Nothing else, no neurologist, no tests, no support, no therapies, no oversight, no speicalist nurse.  Nada.

Now, if i was in the Private system.
All would be dealt with speedily, i would never be waiting over two and a half years for a surgeon to investigate troubling head disturbances.
there is a great divide here in Ireland between public health care and private.
those in the Private system would barely know what is happening in the Public.
those in the Public system know it to be frightening and dangerous.
its a scary place to be and a scary country to be sick in.
we now have the worst healthcare system in Europe.
there is nothing we can do about it on a personal level.
It does not stop me telling my readers how awful it is, how terrifying it is, to know that at anytime sloppy medicine can kill me off in a second in this country.
I can even have a registrar stick a steriod into my head under the skin in A'E, a registrar who had no patients allocated to him so new he was to the hospital.  this injection caused a blood clot.
Had he or my primary consultant (now lost) not been aware that my clotting rate is double that of the normal cohort.
well if they did, they ignored it.
I think they didnt bother to read my notes.
amen to that.
i say.