Tuesday, May 30, 2017

slainte care Ireland

the committee on health at government buildings launched a 'new way,' 'new approach' and i believe called it 'Slainte care:
From This....TO.....

From This....To This.....
We are calling the system Sláinte Care and are also proposing the launch of a new health card, called a Sláinte card.
“That card would give people an entitlement to access universal healthcare locally in their community, GP care and reduced cost medication.”
in better times, hurt and damage and harm done to me was only a great big damning series of events...in the future..that is as i speak now.
Absolutely everyone would welcome a new way of 'doing' the healthy thing, but lets see its deliverable in my life time.
we have a new dawn...Slainte!
god knows i have had a terrible time in the past ten years.
lets have a lick rather than a bark - Slainte!
right now i have no healthcare provision for what is deemed a 'heavy disease burden.'  if the government is committed to this, let them be committed to uplifting the hurt and the damaged and those suffering from the system that is presently in place.
Genuine care from this is welcome.
First though, is 'mending'.
Mending in a very meaningful way.
speaking to a disability advocate at the close of day i said i never thought what would happen me when i got sick would happen.
i never thought it possible actually.
i reminded her of what a life i had led until i became so unwell with a progressive neurodegenerative disease and we recounted what has happened since.
genuine committment to my healthcare would be what i want now, we launch but let it not only be for the future, but begin now.
those of us who have a 'life limiting' condition need to feel they can end their days with care befitting their disease burden but also honouring the future by beginning in the present.
by starting again, by bringing on board new ideas will be the educated, the bright new future and we all want this to happen.
I have seen too much suffering.
Any person who becomes sick puts faith in their healthcare professionals, when they fail you in such a manner that is dangerously damaging, they have failed you on the trust levels too.  A reminder to the disability advocate being - "How can i learn to trust again?"  also "Can they allow me to live again?" that would be the test of maturity and committment to change.

If the pettiness and the enslaught continues now for my twin sister and i the naming of Slainte will be pastiche and hypocrisy and nothing more.
we are awful good at launching new directives, new plans, and very poor actually in implementing them.
So many been, gone and dusted as launched, few implemented as modern and new, they are but 'launched.'
We have had the whole recognition of considering patients as part of the agenda, that is 'nothing about us without us.'  This has been said by the healthcare providers for a few years now.  On the ground the truth is anything but consideration of the patient, the client for which the largest employer of the state has been created.
we seem to forget that having over 100,000 workers for the health of the county has costed us lives, we have created an unhealthy healthcare system, despite giving the wage, the lifestyles, the mortgage and the pensions to so many civil servants to look after the sick!
Any change is welcome, but it has to be sincere.
We now have enough policies, programmes, visions and plans to paper palaces, lets see the shine on them come to glow in the Irish sun (yes, we get it from time to time).

i want to wake up and begin my day by being grateful i am alive.
i want to wake up with the plan to engage meaningfully in the god given day that is mine as i am a living entity, called human.
i want to wake feeling that humanness.  I want to be purposeful, present and joyous as the dawn rises.
I wake at present with sickness and dread in the pit of my stomach, the hope of being kept alive already deadened at dawning.
I wake at present tearful, painfully aware of my physical decline, my pain and the psychological fall out of damage done by the system we have at present in place.
oh wouldnt it be wonderful to wake, sick but well.  Sick but assured of the living part of being a human being equal to all and at least equal to 100,000 civil servants who depend on me and others being sick for them to have their own quality of life in wage assurances and their 'no sack' policy (i don't believe in this bit actually).
I want to be able to teach about justice, and truth.
i want to be able to say the truth in safety
to tell the people of Ireland never to forget that speaking truth is healthy and that truth will be a strength to uphold a nation, not allow my truth damage my personal life, because others determine that by myself speaking my truth they are aggrieved in some way that it may damage something belonging to themselves.  What damage i do is actually saying it 'warts and all.'  For this, i should be thanked.
My truth should never damage me, my twin nor any other person, it should never be fake truth and i demand that it be acceptable to speak the truth...
why?  Because fake truth, fake news, licking arse, bowing and cringing under abuse, being beaten to a pulp by bad practises of malpractise isn't the way we should run a small nation.
Everyone should be able to stand up and make another be accountable for wrong doing.
Too many are left unaccountable, we have it from all society in Ireland and it doesnt do our reputation any good at all.
Bring back those who will say it as it is.  To know that 'the emperor has no clothes,' is no shame to the emperor, he just goes to his wardrobe and gets the best pants in town.  Simples, in my mind.
a very universal injustice we have to change and march forth to change this pyramid of distruction
its called 'see it, believe it, change it and march forth.'
Am i hopeful.
I have to be.
the guinness is raised daily with the word Slainte, we value the guinness the world over, lets now value the Slainte.
I would value healthcare given to help me cope with my heavy disease burden.
i never felt it was too much to ask of 100,000 workers in this state, surely to god a few of them should feel the same.

i am all for....walking free in the knowledge that those honoured to care for the sick, vulnerable, elderly and disabled will freely give it without sanction of abuse as a top up.

Friday, May 12, 2017

oh for water to swim in - when very sick

2009-2017 i have sought out - water!

i seek it here and i seek it there and no where is it to be found - in ireland.

I seek out a special type of water ....its called warm water.

I see it first in the public pools ....eg:
and a hotel

All were too cold for i am sick

i seek it secondly in a hydro pool, most are developed here in Ireland either privately or in hospital settings.

Hospitals first:
A rehabilitation facility who first stated i needed it in 2009 said in 2017 that 'we do not fit in.'  that is, they can't allow us use this pool.  it is about ten miles away if that.

i sought it at a hospice i attended for a while, they allow mother and baby groups, but not an x-hospice user.

I sought it again at a school for disabled children - no joy.

I sought it again at a centre for learning disabled people - but it was only to be used for learning disabled.

i am attempting to get into a rehab facility as an inpatient, but it will mean i get to use that pool once a day for half an hour!

in all this time, i have been completely unable to get water to do gentle exercises for a muscle wasting disease process.

i tried two hotels, both will not allow a 'pay as you go' fee, but you must join for a full year.  i have not that money.

if my government cannot offer me physiotherapy nor hydrotherapy, how am i to fulfil my ideal need that i keep my body in the best possible shape as i degenerate with a rare neuromuscular disease.

if i cannot get water, warm water in a pool, do you think the state should fund me to get to a pool weekly in a private facility.

Or am i not worth it?
and my twin not worth it?

is this the beginning of state organised euthanasia and private healthcare now in little holy ireland where the rich can pay for their hydro and the poor can seek, and seek and seek and simply not find.
2009 -2017

Hydrotherapy and Physiotherapy (ongoing, no less) was first mooted in 2009 by a consultant in rehabilitative medicine, further suggested as a care plan in 2013,2014 and 2015 by specialist consultants in rare diseases units outside of Ireland.

Ireland is not looking after its chronic sick patients.

Saturday, May 6, 2017

Complicated Ireland purposely complicated Ireland

it is such a complicated little island.
everywhere i look now i see that not a lot is 'simples' any more.

Lets take Health, ah but it would be me to chose that first as my baby subject of interest, so much so i think i will work on getting a PhD on 'quality and quantitative research on Irish health care management.'

its about management i believe and its not simple, but complicated.
who was the wise one who did the daft thing and separated the Department of Health from the HSE?

it hasn't worked, that's the first observation which is not really rocket science actually.

Management, it is NOT the fault of Simon Harris TD Minister for Health that its all going pear shaped, its a monster in the shoebox affair we have in health care Ireland.
so many things are lacking and so much is both secretive and non transparent it beggars belief.
you would be forgiven in believing the Health care service isn't about health at all in this complicated country of mine certainly its not operating as one.

in the hope of sorting the chaos, mess, dysfunction and mistrust they bought in a bevvy of new management, an extra layer lets say, to sort this mess, chaos, and our distrust of the HSE as an organization - to bring back both advancement in actual delivering health care and the nations trust in the HSE.
it did neither.
so that knocks two of the so called answers to pressing questions.
whose fault is it?  - it is NOT Simon Harris TD!
how well did new Management layer work?  - one word - malignant
Management again and on this one we take the role of the client/patient with management and the hospitals.

very heavy stuff this is and contentious for its complicated by both the Department of Health and also the HSE.
the HSE does a heck of a lot of policies and guidelines and structures, and visions and graphs, and projections and so forth adnauseum 
in most if not all, it claims WE COUNT YOU IN!  as part of the deal the patients, clients are part thereof the structure, dynamic, projections, guidelines et al - we are there in partnership (that's a great one so it is), we are there to be heard (nope) and we are there to be helped (nope) but also the HSE is there to be empathic (nope), be a listening ear (no) to listen to the needs you have (no) and to put in place a person centred care plan and package that is individualized to the disease burden (start laughing, i have).

From the ordinary man in the street, even the road sweeper to the top of the pint, the cream, we will name Prof. O. Hardiman who is shrewd, knows what she is talking about and says it as it is, but all know, the sweeper will say the same as Prof. Hardiman, but won't be heard, won't be believed but he will 'understand as equally well, the dynamic, the chaos, the melee and the dysfunction of delivery of health care in Ireland - no brainer that one.

why are we cynical and dejected and let down and lacking a health care system at all.

Make no mistake we have no health care system, there is no system in operation, i mean SYSTEM.
a System i guess is how you deliver, right, there is none.
from hospital trolleys, to overcrowding, religious debacles, religious divide and public/private divide, cuts, austerity, savage cuts and then billions added and subtracted, moved from one area of health to file a gap in another and a drain of resources as in personnel as they go elsewhere to take up better paid employment and better working conditions.
so there isn't a system.
management too jumps as equally precariously as the money pot, or honey pot.  A manager may be in charge of mental health one week and fill a gap in Disability manager the next, and we have 'acting head of...' and then that person disappears for another to take her/his place and the jack in the box pops a spring just about every hour of the day.

no wonder no one knows who is running the show.

try making a phone call to a department within either the Department of Health or the HSE.

the main issue is you can have a clear picture of who you think can answer a question you have, that is 'the protection of vulnerable adults and children' is overseen by the director of the National director of the protection of vulnerable adults and children' but no, that department deals with policies and planning not the individuals.

the individuals are dealt with at source, base line, very base line, the local areas.
these are not skilled people who are also plucked from somewhere to fill this gap.

you can have a guy in charge of this in your area and decide without ever seeing a vulnerable adult that a case, by degree is harmless when in fact many who understand psychology will know, no case involving the abuse of vulnerable adults or children can be quantified by degree of harmless or harmed.

the management structures lack stability, style and insight into real people's lives, they barely meet them and get whopping big briefs to deal with cluster groups of sickness when they may never be trained or understand how to begin to approach it all.
a manager coming from mental health can clearly say when suddenly co-opted into management of disability 'when you get the wheelchair, will that be it?'  a bit of a strange question to a person with a progressive neurodegenerative disorder.

the understanding of health and safety for disabled people too also goes sort of pear shaped with a mental health practitioner manager who decides to leave the above woman without a bath chair aid to get into a bath for two years, no insight that with muscle wasting, leaving such a lack or gap means the person can or could or may crack their head open if they lose footing or grab of the grab rails.

there seems no insight, and that is massive problem within health care services.

if you do not understand cause and effect you will fail hopelessly to manage well.

Managing money.  this is a huge issue.
we have all and sundry claim the biggest wastage in the funds is that funds are wasted within the HSE.
we have this from the driver of the vans delivering the same bed a second time to the same person when the bed was supposed to have been a very different bed, from the repair man who comes for the umpteenth time to mend a wheelchair on its last legs by adding maybe a bolt, screw, or duct tape, yes i have seen this used copiously.

many at the coal face will name 'wastage' as being the biggest issues for failure to deliver proper care and appropriate care to the people.
if you waste it, its gone, nothing has been used for the main purpose intended.

I asked a question the other day about money and the HSE.
we all know that its a bit of a mantra these days to hear there isn't any around, none, as in Nada but then how many groups, organizations, individuals and managers have been told 'there ain't no money'  so if all of the disadvantaged, the sick, the disabled, the elderly, vulnerable and the td's are told there isn't any money in the HSE to deliver what they are mandated to do, where is the money going?
because i have never heard anyone saying their needs are being met.
they very much are being under met and many are on their knees, begging, to the point of sit downs outside dail eireann and far more.
others say it goes in the wages.  we have a top heavy managerial structure with too many captains, whose underlings, do not even know what the answer to a question could be, they get floored when asked a question if you ring the appropriate department to have a young person hesitate badly as so much is changing before her eyes too she doesn't know where to go with the question.

of course we could blog this out in a slog slog and slogging fashion, but to all intend and purpose, we haven't a health care system.

How is it that if you have private health insurance you can get a CT scan immediately for a suspected stroke, that is a bleed in the head F's, and if you are public you are put in a room on a ward and told 'the CT scanners are not manned over the weekend (Friday you arrive), so sweat it out mate, and lets hope you haven't had a stroke, it will be manned on Monday, i ffff...ing kid you not!
OK so.  its that bad and that's the divide, so the scanners ARE there, they ARE being used, they ARE operational for those paying, but not for those depending on the state.
this is so wrong.
the scanner in the hospital i attended, was closed for the weekend.
for all i know it may well have been opened for private patients, i am not to know.
but sure as eggs the anxiety in a side room with a possible stroke event is worrying.
the scanners are within walking distance and you are panicking as a sick person with a suspected stroke and no consolation can be had from the statement 'ah sure you probably didn't have a stroke.'
no one should have to wait three days to find out, when if you have money it could be three hours or three minutes and problem solved or crisis begins!

i do not see how we equate living and dying with the amount you have in your pocket, society will always have the poor and life needs all types of people in it to function as a society.
not everyone can be a doctor, or lawyer and pay insurance, you also need builders, brickies, and writers, artists and road sweepers.
all work is viable and needed, therefore i contend that health care should be provided for all, all contribute to society in some shape or form, and they should be looked after.
well my fingers ache as they clap along the keyboard, so i am ending this.
i pretty much just stated the obvious, but maybe some countries don't know the obvious.
bloody nice scenery but don't end in an Irish a'e.
i have to add - especially if you are a woman and poor.