Friday, September 16, 2016

when living in Ireland really means 'existing' when you have a disability

many things go through my mind daily.
unfortunately far too many rumble around during the night making me restless and wrecked.

most of it is described in one word really, that is 'Disbelief.'

nothing prepared me for living in Ireland with a disability.
Nothing prepared me for our healthcare service providers, these are the agents of the state who are funded by the state to care for the sick, elderly, disabled and young and mentally ill and learning disabled, frail, vulnerable and poor.

now with a brief like that you would begin to think that they would have skills in one department anyway - empathy.
they don't.

But also its the largest employer in the state too.
So there are thousands there, providing care for sick, elderly, disabled, young and mentally ill, learning disabled, frail, vulnerable and poor.

given that many of us will land in one or more of these categories, i fear for the future under a regime that is but that, a torturous regime of trying to Live in Ireland at all under this regime.

they understand one word usually - its 'No.'

what i cannot quite get my head around is this....the budgets.

if we have categorized budgets how is it that vast swathes of people are saying either on secret forums on facebook, in the media (which isn't secret) in letters to the media, which also are not secret, in research papers, at conferences and through ceo's of many disability organisatons, through campaigns from charities, organisations supporting various groups that care is non-existant.

if it is non-existent - where is the money actually going?

we have more people on waiting lists for medical proceedures than ever before.
more people lying on trolleys in A'E waiting for a bed than ever before.

the stuff of a healthcare service that people simply cannot source and cannot source in droves are the following and i badly need an explanation from the state why are all the people of ireland suffering so severely now when we once didn't do so badly at all.

  • major waiting lists for routine surgery
  • scans as in mri, dat, ct, ultrasound
  • neurophysiotherapy
  • physiotherapy
  • dental care
  • wheelchairs for growing children
  • safe wheelchairs for adults
  • respite (no-existent)
  • hydrotherapy
  • psychology
  • neurology (there are more neurologists in mongolia than ireland)
  • dietitian (we have very few)
  • meaningful occupation for learning disabled adults once they leave school
  • no place for same group to go to once they leave school, and all service provision stops when they reach 18, all that they had cease with a number, their age.
  • no human rights whatsoever
  • no neurorehabilitation (ongoing campaign at present with NAI
  • no social workers for the most needy.
  • no take up of posts in psychology and social work in many areas for years.  Leaving adults and children without these vital services (my area being a case in point).
  • PA's cut backs
  • home help cutbacks
  • home care packages cutbacked.
  • nursing homes - severe shortage but at least i am pleased about that, for in these places you just wait to die, they are nothing more than holding pens and prisons.

  • we have rampant abuse in the following places reported daily or almost daily:
  1. nursing homes for the elderly
  2. residential care for the learning disabled
  3. abuse of individuals in foster homes
  4. abuse and lost children in care of the state because their families can no longer care
  5. abuse in the community (yes i have heard of a many cases)
  6. abusive practise that children who are mentally ill are put in adult services and hospitals for mentally ill.
  7. abusive practises of young offenders being locked up for hours
  8. abusive practises of young offenders not getting food for over 18hrs. (i never offended and was left without food for 24hrs because the hospital couldn't get their head around the fact i am ceoliac, so they didnt have it, so didnt provide!)
we have expenditures which are inexplicable and incomprehensible:

  • a full legal department within the HSE whose sole job it is to defend every little wrong move the HSe make, and i mean every single iota of documentation is scutinized by this legal team, especially if there are complaints against the HSE, it begins a roll on forever that everything has to be seen and done via the legal teams.
  • taxi fares for employees of the HSE is marked as millions a year for them, yet all transport help has been denied every single sick person in ireland today.
  • charity CEO's are earning extraordinary wages, i mean astonishingly high wages.
  • ten per cent more managers now in the healthcare system than ever before and its worsening by the day
the healthcare system is so terrible today in ireland that its classed as the second worst in europe
AND we have no human rights, as we are the only country now in Europe not to have ratified the Rights of those with disabilities.

two people fight for care right now, I will name them here as case in point.
they are myself and my twin sister.

soon we are to get two wheelchairs, they are state of the art wheelchairs, and have come at great cost to us, up until now we struggled in bangers which ended in the following:
  • ann has smashed into a granite wall opposite the hospital she was making for when the wheel fell off (they had been affixed by the wrong bolts so the report stated)
  • margaret had been taken for a very unwanted ride into a massive cluster of nettles, missing a steep gully by inches when all manner of things were found wanting on a ten year old lethal banger of a machine.
  • ann has slithered twice away into sides of paths for no good reason other than the wheelchairs were basic and only meant to go collect milk and bread not go and enjoy the nature of the changing colours of autum.
  • we have had split tyres and left stranded in the capital, stranded in a different county.
  • full panels of a wheelchair falling away as one was crossing a road.
  • a wheelchair jack knifing off a ramp because the arm became lose suddenly as one sick older lady was guiding it in, she could have been seriously injured, same woman who ended in nettles rather than down a gully with the wheelchair on top of her.
  • throttle knob coming away in sick persons hand when guiding it out of a van down a ramp.
  • left without a means of getting out and about for a full summer.
we are getting super dooper wheelchairs and everyone in holy ireland will be jealous.

i think they will be rightly jealous but this doesn't tell half the story once they see what we have finally got.  there is far more to the story and many may not understand it when we tell them, we are a funny country by half, so we are.
the government of the day is baying for private healthcare provision over the public way these days.
they are presently running the public services to a non-existent state of affairs.
i do not approve.
i believe in public healthcare because i believe all should be covered for healthcare provision, getting sick, being frail and being disabled are not actually career paths any of us chose to take.

nor do i believe in having healthcare for those who can afford it and none for those who cannot.
so what is the story that is profoundly sick in the above story here.

both myself and my twin have clung on for dear life to our insurance policies, our father started these off for us when we were tiddlers and we kept them up in 'the good times,' and we did have that even if i personally never worked, but i kept this policy up and stuggled to do so.
we did this at a loss of many other things - we do not socialise much, we do not drink, we do not smoke, we do not go out for meals, theatre, films or party.  we have also no dependents which is useful too.
we live a very frugal lifestyle because we have so little funds, but we do keep paying into this insurance policy.
why - because we are fearful.
what the policy doesn't give us is a means to get our needs met, we do not go to private consultants (we cannot afford the down payments), we do not get private physiotherapy (we cannot afford it and the pay back through insurance is only 13e out of every 50e spent) , we do not use the private healthcare system because our policy doesn't allow us to.  The policy is a hospital one, meaning if we get sick and are in hospital many things will be free, but we have never been in hospital in a many a long year to be able to avail of this policy.
but what IS in the policy is a fund to the value of 6 thousand, which we can use, to get appliances, the appliances are few and named, you can get false eye balls for instance and you can get wheelchairs.

my twin and i wanted to try and enjoy what was left to us, and we call being outdoors enjoyment.
note the above types of entertainment which most will avail of and we do not.
we are solitary and isolated and partly by choice but partly not.
we viewed the wheelchairs as 'outdoor wheelchairs' to bring some quality of life into our lives, which are bleak and getting bleaker.
but these are more expensive than the usual chairs even the sophisticated chairs are expensive, but most powered wheelchairs are anyway, if they are to be worth the use they are intended for.

the funds available through our insurance was offered on a plate to the public healthcare provider, this was significant actually, half the cost of the wheelchairs.
the public provider refused this money.
now my bank balance reads as a big fat zero.  thats scary and only recently found this out, and i am scared.
but while i am restoring some paintings to sell to keep up my healthcare insurance out of utter terror of the public health care system, you cannot have it both ways.
the Government of the day and the HSE cannot have it both ways when offered from the coffers of an insurance policy half the sum total of these wheelchairs.
why did they not accept this money when they consistently tell us they are broke and i mean slash down broke.

because they couldnt really get their head around two questions they asked themselves, and these questions they usefully put on my HSE files:
who would own this wheelchair?
what happens if we need to take it from them when and if they become unsafe?

grappling with this now for well over two years they couldn't come up with the answers, (even with a full department of a legal team).
so what do they do, they buy the whole shebang and so avoid answering them at all.

i mean, answering two questions to me is 'simples.'  it shouldn't have taken two years to be so unable that they abandon the questions entirely.
it could have all been worked out on paper, as a collaborative affair, saving the HSE thousands.

as they couldn't answer the questions, they lost a small fortune which could have freed up funds for other care and services.

so don't look on these wheelchairs as a kind of excessive expenditure on us when in reality half the cost could have been funded by us which would have left the playing field level and the cost as average to them for very sick people.

what has turned out to be excessive for them could have been average for them.

i tell you my readers of my blog, it just stuns me the logic of all this, absolutely sends me in a spin of incomprehension of the thinking behind their logic.

i want all to know that not sorting out problems, answering questions and doing it all a different way is costing the state a bloody fortune.
so when you see us out walking the dogs via a wheelchair for legs and see an elaborate affair, don't be jealous, be angry.
not at us.
but at them.
because lord knows we tried to be fair, we tried to halve the burden.
if they refused. they refused.
it wasn't that we did not offer, we did!  it wasnt our money, it was our insurance which we have been paying into since we were born first by my dad and then by me, struggling never working but still doing this out of fear.

my biggest problem now is that my bank balance is zero, i have to try and sell something, and i mean this.
my next biggest problem is my mind goes blank when i consider state wastage of money.
its like being shot with a stun gun so it is.

V4 is coming my way.
its a bit of a tank, like as in war.
if they dance all over their generousity i am putting the true story behind this one out first.
before they begin to glout over their wonderful generousity, which will surely come, so the facts have to be put to the public because when questions start to be asked as twins go out together, the questions will be answered not in two years hence but in one month prior to receipt of wheelchairs.

it isnt that funny.
its outragous in fact.
its very wrong to run a country in this fashion.
its arse to me.  it remains arse to me.
but its also a very traumatising system.

but of course you have heard most of that part and i see no end to it.
today i was suicidal, but as this blog is long i cannot dally on the feelings in my brain because of PTSD, i am not having a good time, but i am setting things straight here and preempt a situation surely to happen in our holy country.


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