A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
~~ Scroll left side of this blog for needed resources. Also, use our 'search by topic' tool, to find specific information.
Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.
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
· 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
· 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
· 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
MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis