EDS Patient’s Bill of Rights (again)

EDS Patient’s Bill of Rights | An Angel with Wings

This post takes on new importance as various groups are trying to formulate “rules” for opioid prescribing. Instead of rules for prescribing, a better approach would be to establish the rights of people in pain.

Instead of talking about what others CAN or COULD do (and prescribe) for us, we should be talking about our rights as patients to receive effective medical care for our pain, even though the cause may be unknown.

Medical care for pain clearly includes some form of pain relief (not just what works for some other people), since relief of symptoms is a doctor’s professional duty.  (See previous post “Pain care is a matter of ethical and professional ethics)  

Just like a diabetic has a right to the medication used to control their blood sugar, even though the cause of this symptom (diabetes) cannot be “cured”, we have a right to have our pain symptoms controlled.

The full version of this document is well-worth reading – this is only an outline of its main points.

The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my EDS was undiagnosed. My experiences don’t seem to be unique. Many members of the support groups I participate in have had talked about similar experiences with new doctors.

Because of these issues, I have a very hard time trusting doctors. This is common in patients with Ehlers Danlos Syndrome.

The sole purpose of this Bill of Rights is to ensure that my needs are communicated up front, and to discuss them with you so that we can build a great doctor-patient relationship. 

1. I have a right to be treated by medical professionals that believe that Ehlers Danlos Syndrome exists.

2. I have a right to be treated by medical professionals that believe that I have Ehlers Danlos Syndrome.

3. I have a right to be treated by medical professionals who are willing to continue their education to provide support and treatment that is appropriate for my specific condition.

4. I have a right to be treated by medical professionals who believe in my complaints.

5. I have a right to be treated by medical professionals that do not solely focus on my psychiatric issues as being the source of my problems.

6. I have a right to be treated by medical professionals who are able to admit they don’t have the answer to everything.

7. I have a right to be treated by medical professionals who take my pain seriously and work to bring it under control.

8.  I have a right to be treated by medical professionals who respect my intellect and knowledge about my disease.

I know that YOU were not one of the doctors who let me down. I’m not blaming you!

My case is complicated, and I definitely don’t expect you to have all the answers. I realize that I am the sort of patient that can scare a doctor because you can never make me well again.

But, if you are willing, I will do my very best to start our relationship with a clean slate, even though I’m scared. If you give me a chance, I promise I will give you one too.

You might not be able to cure me, but together we can make me better than I am today – and I really need your help!

I encourage you to visit EDS Patient’s Bill of Rights | An Angel with Wings for the full explanation of these rights and to read some of the other excellent articles on the site.

 

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One thought on “EDS Patient’s Bill of Rights (again)

  1. Dave

    Hope springs eternal. But technicism capitalism greed egotism social and political darwinism modernism uniformitarianism machine logic and scientism- that is what modern medicine is about. Ethics is a very thin veneer used as a marketing tool in medicine.
    People suffering disease- well youre trapped in a world you didnt consciously make(although some would say we unconsciously control our lives). Change the paradigm of your relation to medicine, your self, the world, etc-dont play the game any more-find the game changers. Failing that you will continue to be a cog in the wheel of medicine.

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