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The worst year in over ten. The suffering has been extreme for twin and myself.
I ask 'Santa' that if we could, would he allow me us 'be free.'
Allow a quality of life befitting those with chronic disease.
That I have my medical needs met in full.
I have access to therapies recommended
I have access to expertise, which isn't here.
Ageism is against the constitution where all are equal in law and under the constitution
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If you try and mend a broken care system for very sick people behind closed doors and it fails where do you go next in a country like Ireland?
Three years of mediation has produced incredibly little.
this is my nudge to the HEALTH CARE SYSTEM, with special nudge to my local representative TD and Minister for Health Simon Harris.
I believe with 'good will', with a great dollop of maturity, drive, sensible decision making, my life could be a thousand times better and my quality of life uplifted - BY THEM, rather than be placed on the bottom rung of the population for quality of life.
It isn't an accident I am suffering PTSD at a severe level with one of the lowest quality of life within the population - as neuro-psychologically tested by a specialist in the field.
This isn't a massive, complex problem here.
But questions remain and so I place them down to study, for your consideration and help us twins transcend.
My sister and I are 'rare disease' cases.
- Why did a CEO claim that 'did you know that the Irish doctors have a different idea of how to care for you to that of the UK doctors?'
- (I certainly did)!
- Why was every single MEDICAL recommendation since 2005 never followed through?
- Why would the HSE Healthcare funder enable two sisters travel out of the country under the E112 agreement only for recommendations made during the 'out' to expertise, never implemented on our return?
- Why has 'ongoing physiotherapy' never been supplied in any shape or form other than 4 sessions ever six months, the same as at the beginning of illness and now ten years on?
- Why do the HSE ask of me 'what do they mean, 'ongoing?'
- Is this not self explanatory?
- Why has the HSE never found me a Hydro-pool for therapy recommended by many Irish and UK consultants that I avail of hydrotherapy, ongoing to maintain my body - again ten years waiting.
- Why has the Irish state never really bothered about getting me a diagnosis for the complex condition I am suffering from which at present is unknown to my sister and myself?
- How many can go through life knowing they are declining without a disease name, even if no cure?
- Why has the Irish consultant base never followed the recommendations that our disease process was most likely a primary muscle disease and further tests need to be done - (2016 and still not instigated).
- Why have I been left to die alone with no real considerations on my care.
- Why has the HSE not provided a key worker, better social care support and why do I struggle so badly even with the basic tasks of daily living?
- Why can an important investigation be found in our favour and upheld and the HSE successfully drag this out for well over three years, with a lot of denigration, accusation, slur and no real meat or substance presented on the table.
Can I please beg for the help I need in 2019?
Will doing so deliver more bad practises and denigration?
The needs, the care, the diagnosis and the maintenance therapies, are NOT overly weighty.
They require planning and operational management.
This is not a complex case - in deed its incredibly standard.
I remind the HSE I am not bed-ridden, I am not peg-fed, I am not needing extensive body management or handling.
I am very sick with a complex disease with many facets that do need oversight, but with a good manager, good will, ability to deliver and a good heart and sensible management skills, this can all be delivered swiftly and should not take ten years to sort, and allow to fester.
There are far too many GOOD individuals within the HSE so to me I cannot fathom this morass of a mess.
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