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Friday, March 17, 2017

Share YOUR ideas for MS Care

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Written by: Laura


Aaron Boster, MD, who happens to be my MS neuro, is the opening keynote speaker for CMSC 2017.  The Consortium for MS Centers annual meeting  (CMSC) has a strong patient focus rather than on research, and in talking about his speech, it becomes really clear there is a huge opportunity to infuse our voice  and ideas into his presentation.

His talk is titled The Comprehensive MS Center

Where he practices at Ohio Health,  all the services I might need are there.  If I see him and we decide I need OT, PT, social work, even a wheel chair fix – I can get it done there.  It’s a great concept but not widely available.  When a referral is written for me to have other things done, I don’t have to leave the clinic space – the group I am referred to comes to me.

As Dr. Boster presents to this audience of several thousand  MS clinicians  (doctors, nurses, social workers, therapists) about how he envisioned the comprehensive MS center at Ohio Health, he is looking for reflections from people with MS from around the country and even internationally, of what their experiences with ta comprehensive treatment  center might be like.  In other words - what works and what doesn’t work at various MS clinics.  This is not meant to be a critique of doctor styles or prescribing practices for drug treatment.

He would also like to include your picture (using your first name only, and the STATE you are in and not your city).   If you are not comfortable with using your picture, a substitute avatar for a patient would be used.  Imagine the impact on your own doctor sitting there and suddenly seeing  your face on the big screen and a quote about  the services you do or don’t receive. Talk about a way to grab their attention!! This is not meant to be a love fest or a chance to publicly shame neuros, but a real opportunity for us to use our presence to raise awareness of our clinical needs.  If you have an anecdote about your experience, that might also be useful/entertaining

To this end, I invite you to share a few brief thoughts.  The more people who participate in this activity, the greater the impact will be.  A few questions that are needed for the foundation of each patient quote are:

Your name (only first name will be use!)

Your state (or country)

Photo (if you are willing) – make sure it is a high quality resolution pic because when I say big screen, I mean BIG screen

Is your  MS doctor in a comprehensive clinic setting?   Yes or no

Optional: If it is not too sensitive, would you also share the name of your neurologist?  The name will NOT be used in the presentation but could be helpful in figuring out the status of their practice such as if it is an independent site or in an academic setting.

What would your ideal MS Comprehensive Center offer?

The following are just some of the topics you might reflect on in your comments as to how a comprehensive MS center might make your clinic experience better: Obviously  don't write about more than a couple and only a sentence or two will be used so don't over think this.
·         What do you like/dislike about how the clinic you attend is configured?
·         Are the services available to you in your MS clinic all you need or do you have to travel to other places?
·         How convenient is it in your area to get the services you need?
·         How often do you see your neurologist? Or do you see someone else such as the MS nurse?
·         If employed, how does taking time off of work to go to various referrals impact your job?
·         If parent of small children, how difficult is it to arrange childcare for your medical visits ?
·         When you get a referral for another service such as PT/OT, how long do you normally wait before you make contact or get in to see them?
·         Is the MRI lab in your clinic or do you have to travel somewhere else for MRIs?
·         What is missing from your clinic experience?
·         Is the clinic space easy to get to? Does the use of public transportation to come and go or the availability of valet parking for large clinics make a difference?
·         Are support groups or other meetings held at your clinic?
·         Are your phone calls handled quickly or do you leave messages and wait for return calls?
·         Anything else you might say about MS, and  the treatment you have available in your clinic.
·         In a perfect world, what would your clinic look like? I encourage you to think creatively – there may be something even Dr. Boster’s comprehensive center does not have……
·         Does your clinic have a way to find out what patients think, such as an advisory board? Would that be useful to your clinic?
I hope you see value in helping with this approach to an important and highly visible talk at CMSC and you will share ideas with me.  For two reasons, please send your photo and comments/quotes to my email at – (this is my blog email account and doesn’t get much mail and a good place I can be sure to gather your messages)

1)      I will de-identify your quotes if you wish to remain anonymous and your comments will even be blinded to Dr. Boster
2)      Dr. Boster has a major flaw and that is he doesn’t respond to emails efficiently, if at all.

Remember your thoughts may  be incorporated into a powerpoint presentation so they don’t have to be elaborate compositions. Thanks in advance and I look forward to getting your photos and thoughts. He will incorporate as many as possible into his talk. If you can do this quickly that would be great, but think about it and send it to me no later than April 4. 

Laura K.

MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis

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