I had advice from a disability advocate on what the referral letter should ideally contain . I had shared this with my very experienced doctor. He said that was fine. two weeks later I picked up the letter to send to Beaumont and he had simply written one line referral, ignoring the disability advocates advice completely. I made another appointment with him to discuss. I pointed out to him that the disability advocate had given some advice which he agreed to. Could he 'strengthen' the referral.
He didn't like that one little bit. stood up, shouted at me "now you are telling me what to do" . Well no, my disability advocate had guided me.
and he stormed out.
I became fairly hysterical in distress - I burst into tears and kept saying to the staff "I didn't do anything" in hysterical crying. Why - because I had been trying so hard to get a specialist neurologist to take me on. I have a rare neuro-muscular degenerative disease and I needed Beaumont.
The next thing that happened I get a letter from the medical card people saying that he'd asked for my removal from his list.
I was devastated. I liked him, I had trusted him. He was a good doctor.
I felt I had advocated for myself and that my right - no?
He refused to see me to discuss it. He refused to meet with me and social worker. He refused to explain or give any explanation for throwing me out .
The medical card office said GP's could do that - I had no 'right of reply' . I had no rights to explain MY side. I Would just have to find a new GP.
A female GP in that practice showed concern, but said she could not take me on as the decision was made.
I feel betrayed, abandoned, and hugely unfairly treated by a GP who got his nose out of joint when a patient said his referral letter was not quite right. His arrogance was astounding. This is a GP in my town seen as a saint. He does a lot of good. He's a good doctor . but has lost the one fundamental essential in GP-Patient relationships - respecting the patients ' voice' - listening. He was the archetypal 'arrogant doctor'.
In Ireland we have too many of them.
astounded I had no 'say' in being thrown out of the GP practice, nor was I told why - I had to accept the medical card office allocating a new GP where in the week I joined her , she had just opened her GP practice launched by Minister Simon Harris no less!. I was one of her first patients.
It's not going well. I don't like her or her male partner. Who from the outset didn't like me. It was patently clear the 'saint' GP had had, behind the scenes 'words' with my new practice.
Both were defensive and would allow no patient autonomy. I was not allowed to have any 'expertise' into my disease or control over my body. It was clear I could not offer any medical knowledge - even though I have lived with my rare disease for over 20 years.
On Friday last I had gone to the GP because I had a raging ear ache and severe mastoid pain. She looked in ear and said; "I don't see anything" ( you can't see into the mastoid! she wasn't going to 'see' anything) , I was distraught she didn't believe me and I felt so unwell.
I then asked her had she signed the forms for me to get private genetic tests in America. I have been trying to get a diagnosis for my disease for twenty years.
The UK specialists in top hospitals had diagnosed parkinsons/parkinsonism, dystonia, muscle myopathy & mitochondrial disease...but could not give my disease a known name. They said they'd never seen it before- probably a rare genetic disease. They recommended more tests.
In Royal Victoria Infirmary Newcastle UK 2015
So now I'd found a USA specialist centre to do genetic tests. (Irish consultant wouldn't or couldn't do them or get them done) .
The young , new GP said on my last visit, said she'd have to consult her insurance before signing. So what was her answer?
"I have to sign you understand these tests, 'informed consent', I must ensure you understand and explain these tests. I don't know what these tests are - I cannot explain them to you so I can't ensure 'informed consent' , so I can't sign for them."
She didn't offer to 'find out', or help me in any way - simply gave the forms back. Her 'insurer' had advised her!
To hell with the patient!
I said "I know what these tests are for" (I've studied my rare disease for 20 years) That didn't carry any weight. I was 'only a patient'.
I got upset - yes, very , very upset. I'm up to my hair-roots in stress. I want to know what my disease is - Tests ARE available.t Irish doctors won't arrange for them to be done. When I want to pay privately they STILL won't help.
I was refused as a patient in Beaumont hospital even though they say they've no record of my referral there? -no- that makes no sense at all
I have no neurologist
I am deteriorating daily
age 65, in a wheelchair
cannot walk
I am on the right (pink blanket) twin Ann on left - same unknown rare disease)
I have no 'treating' consultant for it
no care at all
and a young, just out of training GP hasn't a friggin clue how to care for me.
She refused me access to private genetic tests that I understood but she did not, I got upset.
I haven't the time at age 65 to wait for this young GP to learn her trade! I lose out - I need an experienced doctor. URGENTLY.
So after getting upset and crying hysterically ; "I can't deal with this anymore" ,
What was her advice to a struggling 65 year old woman with an unknown disease - who only wants a diagnosis - treatment - care
"You need to look for a new GP"
THIS is how Ireland treats patients with Rare Diseases - who know more than the GP or the consultants. Arrogance blames the patient for knowing.
So I go home hysterical, distressed, I phone the public health nurse ask her to make a home visit to me
What does she say: "I can't, I'm finishing off paperwork before I go for the holiday weekend' .
And Minister Finian McGrath says last week 'We can now care for the disabled (sic) from the cradle to the grave"
This is NOT 'care' Finian. It's an utter disgrace.
I have no care, no medical 'rights' whatsoever as an older person with a rare disease in Ireland.
I hate Ireland with all my being.
