How we can improve patient and Doctor communications?

[Seasha]

Watch this video as Ashley, one of our MSWorld volunteers, speaks with Dr. Jack Burks, Medical Director for MSAA at the CMSC (Consortium of MS Centers) conference last week. This discussion was asking for ways to help improve communication between the patient and their physician/neurologist.

http://conferencecenter.msworld.org/...-communication

[Maggie2015]

thank you for this video!

Dear Seasha,

Thank you so much for this video and for introducing the question!

I thought Ashley Ringstaff did an excellent job and is to be commended on her speaking skills and diplomacy.

I thought between she and Dr. Burks they came up with good tips I intend to follow. I always come with a list of questions, but Dr. Burks pointed out that patients often talk for 10 or 15 minutes after asking the question, and by that time the doctor has forgotten what the original question was!

I also thought it was a great idea to list questions in order of importance and to, at the end of the appointment, take a moment to summarize with the doctor what was asked and how it was answered, so that both the doctor and the person with MS can follow up and fill in gaps if there has been any miscommunication.

However, I thought Dr. Burks was a bit too quick to let doctors (or neurologists) off the hook. I was grateful when he said they needed to be better listeners, but he dropped that line of thought and focused on what the patient could do.

I so appreciate that, but I think we need more emphasis on WHY neurologists need to be better listeners: so they can be attuned to their patients, so they can be empathetic, so they can be proactive in advocating for each of their patients and addressing each of their patients needs

I think neurologists need to be better listeners because their patients with MS are an invaluable resource, and this is why. (Aside from the fact that we are BRAVE! )

MS is not a one-size-fits all disease. (Ashley mentioned this in relation to the disease-modifying medications). But it’s not one-size fits all in relation to symptoms, symptom management, progression, quality of life.

Neurologists frankly do not know what causes MS and they do not know how to cure it. They can do research, and clinical trials, and use statistics and data, and all of that is valuable and wonderful and I’m sure helps all of us. I don’t mean to pooh-pooh that.

But if they would take the time to hear us, to hear our stories (as long as we don’t carry on for more than 10 minutes after asking a question), they might get more of a sense of how respond to and treat a greater variety of patients in whom the disease manifests in different ways and has different meanings in terms of quality of life.

For example, I have learned to live with the numbness in my face that comes and goes, my blurry vision that comes and goes, the sensation that something is stuck between my right big toe and my right second toe (WHICH, THOUGH EXTREMELY ANNOYING, comes and goes), the tingling in my hands and fingers that comes and goes, and so on.

I’ve learned to live with the deterioration in my handwriting and the painful “woing” that goes down my hip if I turn too suddenly or get up too suddenly and leaves me limping for the rest of the day.

But when I was teaching full-time, and I had such trouble with balance and proprioception (understanding where I was in space) that it was fatiguing, I needed to take the time to explain that to my neurologist in order to have him fill out the forms that allowed me to have reasonable accommodations at work and continue successfully teaching full-time.

I am forever grateful for that neurologist for taking the time to listen and then for being willing to take action that would benefit me (and my students and colleagues and family).

It took me 2 neurologists to find him, and he practiced in another state and eventually I had to move, but he made a difference in this instance because he listened.

I’m not saying by any means that he changed the world for people with MS everywhere, but he changed my life for the better for 3 years, and we need more like him!

The majority of neurologists do not have our disease, and I would venture to say that many of them probably do not have close loved ones who have our disease, or “being better listeners” would not be too much of a stretch! (maybe I'm out of line in saying this).

PS. Seasha, I just want you to know my response to the video you posted was in no way meant to be combative or to undervalue the information it gave—it’s a great video and I so appreciate your sharing it—I’m going to use the tips in it, no question!

My only problem was that I felt Dr. Burks was too quick to shift from “doctors need to be better listeners” without explaining why. Hopefully, he’s out there somewhere telling doctors themselves why they should be better listeners so that when we come in with our questions, they’ll be ready!
Fingers crossed that he's doing it, or someone else is!

Maggie

[poppydarling]

I so appreciate that, but I think we need more emphasis on WHY neurologists need to be better listeners: so they can be attuned to their patients, so they can be empathetic, so they can be proactive in advocating for each of their patients and addressing each of their patients needs

I think neurologists need to be better listeners because their patients with MS are an invaluable resource, and this is why. (Aside from the fact that we are BRAVE! )

MS is not a one-size-fits all disease. (Ashley mentioned this in relation to the disease-modifying medications). But it’s not one-size fits all in relation to symptoms, symptom management, progression, quality of life...

Here, here Maggie!

[Maggie2015]

Awww, poppydarling, thanks.

And three cheers to Seasha for posting the video, and to Ashley Ringstaff for bringing up the issue!