I am completely worn out and down by this endless, endless struggle with the HSE. i consider it demeaning, degrading amounting to torture and inhumane treatment.
i want to talk on one issue which demonstrates a complete lack of care and its impact on me and also that of my twin sister.
HAVING A GOOD MATTRESS FOR SEVERE, CHRONIC, PAINFUL AND DEGENERATIVE PROCESS IS 'VITAL' TO GET THE BEST QUALITY OF SLEEP POSSIBLE.
my twin and i have fought to have this one basic issue addressed.
despite representations on our behalf, the HSE consistently counter this with 'they receive a professional skilled service.'
we remain without a mattress that suits the level of pain, the level of disease and the level of dystonia, muscle wasting and all manner of symptoms we have to endure.
but endurance now has been for far too long on awful surfaces to sleep on.
consistently throwing a few inch thick 'toppers' for bedridden older people who do not actually have our condition is wrong.
they are insufficient to meet the chronic nee we have.
we then 'trialled' a mattress from a retailer, and have had this for months on end, its not working.
the hse then gave me a real mattress, but again its not working for me.
they add bits to this, they add toppers, and covers but its not helping me as its too harsh for my body and i have told them this over and over and over again.
i research all the time. i consistently see that through many retailers in Ireland the HSE do provide quality mattresses for very sick people, so why are they giving us hell for year after year and providing basic items inconsistent to the degree of night time distress of pain, discomfort and heat intolerance and unbearable sleeping surfaces.
recently i was in hospital and very ill indeed and the hospital actually hired in a mattess, it was a Hills Rom Primo, it was divine, with only tiny issues to address i contacted the company on my release.
they suggested the Duo2 as i explained the complex issues of my twin sister and myself.
i asked how much would it be to hire these and trial, i am at my wits end.
i cannot afford it.
i have put it to the HSE begging to allow us trial and see if these are suitable and put closure of chaos of beds issues now going on for over six years.
the agony of procrastination and many sleepless nights, does now amount to torture and neglect on a grand scale.
the company reassured me the HSE has supported severely ill patients with these mattresses, yet they consistently messing with us.
only yesterday a guy came out with a HSE official and tinkered further with the bed from hell, and started to go into all sorts of technical 'pumping' up for the HSE official as only those flogging their wears will do.
i stood by knowing and being ignored, his efforts have been in vain for me and the bed mattress is goddam awful.
what am i doing at present?
i am like a bed vagrant, switching from this awful shite mattress to the sofa, which is softer and cooler or to going to twin and attempting the spare room one which is bigger and i can stretch out dystonic posturing as my bed is tiny and cramped.
i am climbing the walls over all of this.
the toppers and mattresses are banking up in my spare room, disgarded as useless for me and i have asked the HSE to remove them.
How long can we ignore pain and sleepless nights which is vital for the optimum health of very sick people?
Do people not consider six years too long?
if i could, i would get the Duo2 tomorrow and be shut of the awfulness of this agonising begging and begging and profound need to have a sleepful sleep rather than dreading the time i have to lie on a surface that within half an hour has me sweating in extreme distress and discomfort, before i drag all the bed clothes to the sitting room and decide to give up or get into the van and arrive at twins to go to her back room.
its insane, its torture, its inhumane, its neglect on a grand scale.
please share this blog.
i am going through hell and i want this to end
yes, i have asked the HSE to trial the Duo2.
what more can i do.
i now know they have provided these for other chronic sick individuals, but the knives are out for the kennedy twins.
help us if you can.
wits end i am
AWNYAH TODAYSAY Ann living in the Republic of Ireland and it is not a good thing. We have now ratified the EU convention on the rights of people with disabilities, yet we failed in ratifying the optional protocol, allowing us ability to make complaints to the EU under the convention, with little facility to do so in our own country. We go unheard in every sense of the word. This is unjust and leaves us more vulnerable and open to abuses. We are suffering. I am suffering.
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