Who wants to do this at the age of 66yrs?
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.