Public hospital care almost equally so.
Who is fighting for their patients?
Having tests in UK not available in Ireland
My GP is a mine of information. Not always welcome. But it is his cynicism that disturbs me. His own 'brokenness' is quite apparent as he lapses into depressing negativism and defeatedness. Its enough to make me sink into the deepest depression concerning my will to live, not die, under Irish Health care.
He often sounds like a man weary and in pain. Too often for me to gain any hope or joy in my medical care. I too, feel defeated.
This scenario is a wasteland of misery. Where fighting for medical crumbs is essential not optional. Those medical crumbs to keep you alive.
Take some recent offerings from my GP. The dialogue goes like this:
Primary Care Team Meetings
MK: will you attend my primary care clinical team meeting and fight for the care I need?
GP: Margaret, I've long since stopped going to these meetings, nothing is achieved, they are a waste of time and I'm better used seeing 15 patients that morning .
This meetings are vital for the co-ordination of my care as a woman with a rare neuro-degenerative disease with multi-system problems. They are designed to co-ordinate care, to get the best care.
He didn't come.
Well he was right. Nothing was achieved.
But HE might have made a difference.
I'd have liked the effort - the support...
Physiotherapy
MK: I really, really need physiotherapy. I'm in so much pain. It was recommended to be 'on-going' by UK specialists.
GP: Margaret, I have a patient who had a stroke, was rehabilitated in Donnybrook , came out walking and got NO FURTHER physiotherapy. She's now in a wheelchair - not walking.
or as in another gem...
GP: you are as likely to get physiotherapy as you are to get a ham sandwich from a Rabbi.
Neurology
after considerable difficulties with my neurologist, who is profoundly useless - if not negligent. I discuss my frustration and fear with my GP.
MK: He is useless, he's not fighting for my care, my treatment or even trying to find out what's going on; why I have this disease, or even what it is, He doesn't order the tests the UK say I need, he hasn't put in operation UK recommendations and now refuses to sign the E112 forms to get back to the UK for more tests a London specialist says I need.
GP: (reluctant to hear criticism of a consultant - strongly resistant to listening.) I don't want to 'get into this'.
My GP is as much into medical 'brotherhood' as many in the medical profession.
MK: But I can't talk to him, he doesn't listen, he can't talk to me. There's NO DIALOGUE. NADA, nothing!
GP: Margaret, all neurologists are 'on the [autism] spectrum'
This I understand at least, but doesn't help me. I have long wondered whether my neurologist is on the autism spectrum due to his very weird 'relationship' style. Which includes NOT LETTING you put your own shoes and socks back on after examination. No, he practically forces you to 'let him' put your shoes and socks on, no matter how much you insist you can do it yourself.
I told this to my GP who looked at me in absolute confusion with a smile on his face suggesting something akin to 'are you making this up'. No I'm not!
GP: Does he put men's shoes and socks on.
MK: That is a good question - I don't know!
This neurologist also pulls his hair when distressed, challenged or anxious. Yes, starts pulling his hair. tugging at it. it is a sight to behold. A consultant in distress.
Primary Care support in the home
My twin speaking at the Ratify the UNCRPD rally outside the Dail earlier this year. I spoke after her on - Getting medical care in Ireland (or rather NOT getting medical care in Ireland!
As I degenerate, I need more support to live independently. but the HSE primary Care services refuse to give me the support I need. I go to another, younger, female GP. I go to her when I'm particularly upset. The male GP does not cope well with emotions. I was crying and at the end of my coping rope!
MK: I really need more support in daily living. I'm not coping, I am on the edge. So depressed, unable to cope
GP: Do you need to think about a nursing home.
MK: (Horrified at the 'easy' way out, I say) No, I bloody well don't. I need more HSE care for independent living, that's what I need.
I came out roaring crying. feeling my GP's are simply NOT on my side of the court.
I need a neurologist I can dialogue with, not one with a compromised ability to relate to his patients
I need further medical investigation/tests into my rare disease.
I need (and my twin with same disease) overseas medical care as hospitals have said they CANNOT deal with our disease. We have this in writing.
I need primary care medical support - physiotherapy, and more
I need a personal assistant (PA) package to allow full independence.
I need GP's willing to fight for me. Not shrivel up into their own 'depressive' moods about Irish Health Care. Willing to pick up the phone...write the letters, go public...on what we patients are going through.
But the GP's...our first real medical supporters are depressed, withered in spirit and 'fight', long ago lost the will to fight for anything for their patients. Knowing the HSE primary care, even hospital care...are so collapsed they feel they cannot impact in any way for their patient.
This is exactly why our HSE services do not change. The medical profession has given up the fight. The HSE love it!
But this is wrong, even unethical, even unprofessional. It is the GP who MUST fight for every individual patient, and/or the consultant. they must get the care that patient needs. Its hard work, its dispiriting, but has to be done.
If GP's/consultants abandon us...we will die and die early. Or live miserable lives of medical hardship and pain.
how can we patients support our GP's/Consultants to be full advocates for better care?
answers please in comments section.
Yes, Health Care IS a human rights issue
couldnt be more right on this one sister
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