Medicine has 'gone too far'. Patients rights are NOT upheld. Doctors hold all the power.
Here in Ireland if you are sick, disabled or old you are expected to hold no power. There is always a 'way around' depriving you of autonomy and agency and one way round is to invoke your 'unreasonableness', your lack of knowledge, your state of mind, your illness.
This morning I wake and look at the newspapers and find THIS:
http://www.breakingnews.ie/ireland/pregnant-young-girl-detained-under-mental-health-act-after-seeking-abortion-793163.html
If we looked closely would we find that this psychiatrist had a Christian fundamentalist background? Would we find he/she had an authoritarian/autocratic personality? - used to wielding power over patients. Psychiatry is the most powerful profession to belong to. I have long believed it is the profession one enters to enable control over people. Its a pernicious profession.
But psychiatry is not the only field holding and wielding power over patients. reaching consultant level many medics (but not all) believe they have been handed the 'position and permission to control' the patient.
I have met very good consultants who do manage quite easily to have an equal/collaborative relationship with me. these doctors tend to be more mature, more relaxed, more likely to welcome the patients views. They are kindly, compassionate, and respectful. They do not feel the need to have power and control. They are just very nice consultants. They listen. they hear. they respond, they share, they WORK WITH YOU - TOGETHER. They are as rare as hens teeth.
With a rare disease, a complex disease, you get to know medics and it is a hard road if you are unfortunate enough to be lumbered with a power hungry consultant. arrogant and all knowing.
but patients have rights. rights to autonomy, to respect to agency and power over their own body.
some doctors readily agree to patients , for example, making decisions over whether to go for extensive chemotherapy or live out their lives. whether to have a surgery or not. Whether to take that pill or not.
But this is all 'allowed' only after the doctor has been the TRUTH - TELLER of your condition.
No Consultant likes or welcomes these decisions made by a patient...
"I would like an MRI to check for..."
"I want to see Dr .........to discuss ....."
"I want to have ......medication for a trial"
"I would like a course of antibiotics for...."
"I ask you to fill out the E112 forms for overseas treatment please"
"I think .....test would be good to do"
" I think this treatment should be tried"
Because they are pre-fixed "I ..." this immediately takes power and control away from the consultant. They don't like the "I" part. That part where YOU state your wants. Where you state your medical view (you are not supposed to have one). where you control....
No, these and other patient led ideas are strongly rebuffed by the medical profession. "we cannot have PATIENTS directing their treatment like this".
Well why not? Because it lessons the Dr power over you! Doctors are trained in medicine...you, the patient, know nothing. You are NOT trained.
But increasingly patients are taking power. The patient becomes the 'expert by experience' , We know our body, we know our disease, we know ourselves. No matter what the Consultant says he knows....he does NOT know how we FEEL.
That's me - having special tests in Newcastle -UK
But in Irish medicine the power of the Doctor is huge. We can be denied a service on the say-so of a doctor. We can get a service on the say so of a doctor. And the pernicious thing is a Doctor can get their colleagues to agree with them very easily. Hospitals will defend their doctors to the hilt. The patient is always at fault. No doctor will challenge another...or very rarely.
But if he dislikes you, because you've taken power away from him, you must be punished. And punished you WILL be. No doctor likes a powerful patient. Its bruising on the medical ego.
Punishment is easy...and has many manifestations.
a) withdraw service "go and seek another doctor if you don't like me"
b) Withdraw a treatment "This patient would like....I do not feel the need for....so I am not recommending...."
c) Withdraw support for overseas treatment
e) defends position even in the light of obvious failures.
d) bad-mouth the patient (not difficult to do)
e) make appointments less frequently
f) refuse to answers emails or letters.
g) blame the patient.
h) refusing to advocate for better primary care services
j) minimizing your condition.
and more.....
Those of us who are patients do have rights. We can hold power. We can hold Control . We should hold power, but many relinquish power with the belief "doctors know best" . Actually in todays medical world where medicine is about saving money, not necessarily about your care...you need to hold power.
Here are some 'pointers to holding power and control':
1. Know your condition/disease better than your doctor. (he won't like it, but you need to be able to make your own decisions and NOT be coerced into a treatment or go without a treatment for lack of knowledge.
2. Keep your own patients notes/file. Get copies of all test results, all letters, all information about you to put into your file. Call it 'the expert patient file'. Bring it to every appointment. have the Consultant write in it at every consultation, e.g. what he thinks and what he intends to do. record all changes to treatment.
3. record your consultation. Write notes immediately on exiting the doctors room. Write what he said, what you said. Your requests, his responses.
4. Never, ever go to a doctors appointment alone. bring a 'witness' and have your witness sign your written notes on the visit as true and valid. Have your witness write their perception of your consultation.
5. Do not give your consultant permission to speak on the phone to another doctor, your GP or anyone else without your presence. There's too much 'backroom' stuff going on here. And it is NOT always to your benefit.
6. insist all letters to any other person is cc'ed to you. (this is mandatory in the UK but not in Ireland)
7. obtain your files under the 'freedom of information' (FOI) act. you are entitled to have your file. read your file and question any redactions (things blanked out )
8. be vigilant. Don't let things slide or drag out for months. chase up results, appointments, tests.
am I a paranoid patient? possibly...but I've learned the hard way.
medicine is at a crossways...and its going down a bad route.
it does not always respect your need for good expert treatment. If patients don't take control of their own medical care we will be the footballs in medicine. to be kicked about at a doctors whim and wish.
I'm taking power ad control.
that's me at a protest...
Its MY body, my life.
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