Saturday, April 6, 2019

Recipient of HSE medical and community care and BROKEN by it.

I am broken by the engagement with the HSE, our Health caring services.

My twin, left and myself in RESPITE.  we got five days away in a lovely place.  we are assessed as and given allocated respite four times a year.  we never get this of course.  Despite being allocated as needed.
 it is badly needed right now.  (they say I can get it, if I go into an 'old people's home.  I won't as its not appropriate for me.  Rightly so, and I have no choice which to me therefore would be 'enforced'   respite against my wishes.
I was assessed and allocated hours in the home for care.
in three months I have lost 92hrs of care, the HSE claim they cannot find anyone to fill the slot the lovely PA left when she retired.

I am exhausted from this engagement which the HSE was asked to engage in, in 2015 and yet here we are in 2019 with little or nothing to show for it.  In fact its all getting decidedly worse.

I am suffering.
It's very real and we are talking about human beings in this situation, not monkeys or dogs, or cats or zoo animals but real flesh and bones - human beings.

we, as human beings have won the right to live as equal to those who are not disabled roughly this time last year with the ratification of the UNCRPD.    I have seen no change in an anxiety riddled life cursed by the dynamic of dysfunction in my small country.

we have sat at the mediation table for five years.  - this to me is a waste of my life.

Each meeting produces 'action plans' to be done.
we are talking about very little needing done.
we are talking about what ALWAYS should have been done and although agreed in principle should be done, its just not getting done.

The action plans have not translated into Action.

Anyone going to a talks table brings an agenda of issues with them.
This agenda is not on the scale of BREXIT.
Its on a minor scale in the, er, scale of things.
Its two human beings against a very large organisation which was mandated to apologise, sort the issues and 'own' their responsibility.

I woke this morning screaming just that.  I had a nightmare.

I have been sleeping with my twin sister on her put-up bed in her living room as my home has had no heating for months and I am ill and cold.
I woke at 5am screaming. I got tea and toast, and wondered if I would sneak out on my wheelchair and go home with my baby dogs.

Shouting out loud "sort these issues."  I found myself in a small room with a few individuals, all of whom I know within the HSE.  My twin was in the room, weeping in the corner.
I stood screaming at the main protagonist in the charade.  Explaining in my nightmare that I am on morphine and other pain relievers saw me wake in a sweat.

"Sort the issues,"   ringing in my ear.
"Sort the bloody issues."

I feel my life slipping away in a psychological mess and distress, a circus and extreme fatigue and suffering.

Many see it, all see it in fact.  Those who want to see it, that is.
The HSE felt very saddened at my 'impact' statement which I read out at the meeting before last.
But nothing has changed.

Sadness and expressions of it, don't change practical dilemmas.

It will not change, for instance, how individuals - identical twins are continually treated with extreme difference - even if both have the very same set of complex issues, bar one.  One has severe arthritis and needs hip and knee surgery, but this is offset by the other who had a very bad fall and banjaxed her shoulder, and a written report that I have other serious autoimmune diseases which my twin sister does not and require the help (support letter from a neurologist).

My sister and I understand the bad treatment of pitting one twin is distress against the other.
Its the worst sort of dynamic which can cause havoc in a relationship.
I watch my care decrease and hers increase for the past two years.

 I have been in disarray, carers coming in ad hoc and now dialoguing the mess I have lost 92hrs of care allocated to me through assessment of need from February to this April 5th. 

That is a lot of hours lost.
I am so exhausted I have asked if these hours lost, presumably unpaid to who was supposed to give it, is still 'banked,'  could the HSE use the monies to give me a 'Respite Grant' to go chill out and rest, something I badly need.

The Respite grant scheme has been changed.  It's only for Carers.
I can only go into a nursing home aka old people's home and watch patients with dementia holding dolls and teddy bears.

I am not the human being now that I have reached 66yrs of age.

There appears many dilemmas here in this case of identical twins.
Its not a complex case, its relatively simple.
I believe my rights in all of this have been infringed.
we have to see this as a 'human rights' issue now as the suffering has become so great and severe.
we are in an era which claims that we deserve our lives, to be as equal as many others.
I cannot see this playing out in mine.

What I see happening is I am slowly dying in front of the Health Caring Service Providers and they watch on and say 'Too Bad.'  and just hope I die soon.

I have let my local TD's and councillors know about my case.  Nothing changes.

I have informed my own representative who happens to be the present Minister for Health.  I have not felt his impact in this case at all.  He should have acted in his role at the top of the chain in our healthcare services.  Yes, the Minister for Health is the legal 'boss' of Healthcare in Ireland.  

I believe the UNCRPD is been breached on a daily basis across the country.