Thank you for your continued participation in this focus group! This will be the last question before the weekend, and then we will start back up again on Monday.
What would help overcome the main barriers to SDM? Are there any specific areas which are particular unclear or hard to find information about? E.g.
- Resources - support and local services etc.
- Information - to learn more about the treatments available, etc.
- Time
Thanks again and have a lovely weekend!
Local services are difficult to find. For example local msa support groups etc. I live in Indiana and I find lots of people around me with ms but no local ms group or support. I have internet but sometimes it's nice to meet and talk to people face to face.
I lean towards support groups on line to get up to date information. I’m always looking for anything that makes me feel normal. MSAA and the NMS Society both have good information.
Almost three years ago, NMSS Los Angeles chapter offered an 11 week course in collaboration with a doctoral program in physical/occupational therapy at USC. It met weekly from 9:30 to 2:00 during which time each participant was partnered with a doctoral candidate in both PT and OT. The PT partners assessed each of us for gait, balance, strength, then taught specific exercises which could be done daily at home. Participants brought brown bag lunches which we ate while listening to a different speaker each week. Speakers provided information on emotional resiliency, symptom management, diet, disability application, and other topics. During the 11 weeks I met others with MS (for the first time), learned so much more about how MS affects each one of us differently, and gained understanding about my physical abilities. Because of the setting, a program structured for multiple interactions, the small number of participants (about 15), and the relationships that developed, I lost my sense of isolation and sadness, gained perspectives and feelings for community. Health Unlocked and this forum sustain these positive outcomes. I made (and looked forward to) a 60 mile round trip to participate in the course. If one were offered in my region, I would drive a greater distance to be included and supported. Such an opportunity would more than offset my dissatisfaction with a lack of SDM from the medical provisioners in my life.
That program sounds amazing, where all parties could benefit from the course. Just curious, do you know who funded the program - the NMSS or USC?
It was amazing. I assume that it was funded by NMSS since they controlled the application process. If I recall, there was an nominal application fee and scholarships for those who needed. The sessions were held on the USC campus in the building that held the professors and classrooms for the graduate program. My contact with the organization was with Nicole Stolzfuss who may still be with NMSS. She sent me an email last spring asking if I wanted to apply again. Unfortunately, I now live on the east coast in a rural area which doesn't provide many opportunities at all. NMSS is located on the west side of Los Angeles adjacent to UCLA. I believe they run a similar program at UCLA but because cross LA traffic is so difficult for many, they collaborated with USC to attract those of us who lived on the San Gabriel Valley (north and eastern) side of LA.
It is wonderful how events, people, etc. "fall into our laps", isn't it? I read your synopsis of the process you went through and thought "How really wonderful that is!". I doubt many of us have had such an opportunity and I imagine most of us would take it if we could.
After reading about all the cerebrospinal AI diseases (what a large number!), diseases cause by UNK entities affecting balance, strength, brain functioning and fatigue issues and all are apparently degenerating, I have begun to wonder if separating them very distinctly into separate diseases is doing a disservice to the patients. With so many similarities between them. I wonder if rehabilitation programs might not be encouraged to include all the people who identify with the problems. If that was done perhaps more people could be served with the same monies and the money pot even enlarged a bit.
If the groups were enlarged perhaps people in rural and less served areas could get together via some larger organization like MSAA or NMSS and get the sort of help you had, goatgal.
I always appreciate your comments, thank you.
Your suggestion is brilliant! It seems to the that parks and recreation departments Ys, and other entities that don't occur to me at this moment could pick up an idea like this. Stroke victims, MS sufferers, those with so-called CIS incidents, those recovering from injuries all need much of the same sort of retraining and strength building. Unfortunately many of the PTs of my experience do not seem to have the training to deal with complex neuro/muscular interactions, and some lack even a modicum of interest. My rural county has both a parks and rec department and a Y; activities seem to focus on the young, fit, and healthy. For seniors the only offering is something called pickleball set up competitively. I support the young and healthy with my tax dollars but perhaps there needs to be more equity?
Thank you. I was a little less than excited when this series of questions was announced. Because DMTs have not been a part of my experience, I didn't think there would be much applicable to me. I have been surprised and encouraged by the questions, the thoughtful responses, and the signal from the notifications function that what forum members write is read. It may or may not be true, but I feel listened to in a non judgemental way. And this makes a positive impact on my state of mind. Again, many thanks.
Local resources can be very difficult to find - in some geographic areas. When local MS support groups are not available, online communities can sometimes fill that void. While subjective, patient experiences about various treatments, procedures can be very helpful.
But for identifying other local services, ideally, a patient's healthcare provider or health insurance plan should be able to assist (often not the case, though). A shared (electronic) medical records system is another way to improve time efficiencies in the system and improve communications. While some of the larger health centers have all support services in one healthcare system, other patients have to get their medical services across different systems. In these situations, a patient's need for services often gets overlooked.
How might the type of MS I have night progress and what can I do about it?
I don't know what "type" of MS you have but I had a very indolent RRMS. I never imagined I would survive that as it was taking so long to hit areas and creat real problems. I kept ignoring so many SS and then one morning I could not walk. That was horrifying for me. Vision problems I could tolerate, clumsiness and wobbly walking were tolerable, and once I quit teaching the fatigue could be handled and broken brain syndrome could be ignored, more or less. But my legs were another issue entirely. That meant I was going NOWHERE unless someELSE could take me. Horrifying, absolutely.
Reading about how other people have coped and accepted, has been a wonderful experience for me. I thank you all from the bottom of my heart.
This forum is helpful in providing a way for its members to search, and get answers. But we need to make the effort to participate. This forum is not a substitute for a good rapport with your medical team, but it is a good start.
There is a lot of info and resources out there, but not everyone has access to these resources. Perhaps have access or have a way to disseminate information/resources at your doctors office.
All this takes a lot of time, and it can be done, it just takes time. 
Educating both doctors and patients about treatment options for the disease and for treating symptoms would level the playing field a bit and help make cooperation easier between the health team and patient. Not every physical therapist, dietician, or even neurologist is well versed in MS, let alone patients. Having printed information outlining and comparing DMTs would be so helpful to most of us.
I agree wholeheartedly with the comments above about local services. We read questions on the forum so often asking about how to find services, but even internet searches don't turn up much for MS patients. It would be wonderful if doctors and other providers had that information compiled and ready to give to patients. Both patients and caregivers would have a huge burden lifted, and they could make care decisions more easily with that knowledge.
Local support would be nice although I find that forums such as this one suits me fine. Just being able to converse with others that understand what you are going through is a great help. For those that don't have the ability to use the internet, information at medical facilities would be helpful, such as booklets that provide help for the most common problems with MS. That would be especially helpful for the newly diagnosed.
See goatgal's answer.
I worked as a business manager for a Home Health Agency in the late 80's early 90's. Each of our patients was assigned a RN case manager. We generally treated Medicare and Medicaid patients. Whose cost were at all time highs. This was right at the start of what was to be the start of the Clinton health care reform Ha Ha!!
Our RN and Social Workers did there jobs very well and were very dedicated. With the patient population load and the multiple issues they had were a hardship to follow a case manager designation. Ultimately it forced us to hire more staff further increasing the overall cost between contacting doctors, insurance companies and Medicare and Medicaid for pre authorization could keep the managers in the office all day to manage the paperwork trail and approvals was keeping them from their patients visits. So in my opinion it hurt the patient more than helping.
I also see that this is insurance driven to cut their cost and not so much to improve patient care.
Ultimately this is something that can be accomplished through the sharing of information through sites like My Chart. That should be mandated throughout the health care industry. Allowing physicians to see what each other doing as well as the insurance companies having quicker access to all information available.
Support! Just knowing someone has your back! Can make all the difference!
Local support can be iffy to non existent in smaller towns.
I also think that when you are 1st dxed, you are bombarded with (STUFF) Magazines, pamphlets, cards, just STUFF. Then 6 mos. later, (when it hits) you need stuff, poof every thing and everyone is gone.
And I think the web can be very deceiving, if you don't know what your looking for!
What needs to be done to facilitate SDM with MDs and patients:
1) Frankly, I think MDs, especially young docs, would like to have more time with their patients than the 15 plus or minus 15 more minutes with their patients. Certainly for them to do the jobs they are trained to do, 15 minutes will not suffice. In 15 minutes they have no time to discuss in a meaningful way changes in the patient's health or any ideas the patient may have or changes the doc may want to initiate for the patient. They certainly can only dictate. They need more options to increase the face time with patients.
1.a. Docs should elect to have or not to have SDM in their practice. The patients need to know this information. I do not return to an MD if there is nothing remotely resembling SDM.
1.b. I suspect most docs really don't know how to go about SDM. A seminar with real time practice between docs by a knowledgeable and trained SDM user (another doc or veterinarian or well educated nurse) would absolutely be necessary.
2) Patients need a choice of whether they want Shared Decision Making. Many people are not interested. Appointment times could be predicated on that information.
3) If a patient makes an appointment and decides SDM is necessary, the appointment time could be adjusted. Once people know how SDM really works, they often change their minds.
4) If possible, the patient and doctor should be aware of what will be discussed...making a list and mailing (faxing or emailing) it in before the appointment would make it a head's up and that is much easier than surprises. Especially, the RX pitch should be avoided at all costs. A doc's sudden decision to prescribe a statin is horrifying to many people.
5) And there should be an ongoing survey for the doc and the patients to determine how they are functioning within the SDM framework.
As you are probably aware NPs have various levels of legally determined practice behaviors. In some states and in states where I practiced, Family Nurse Practitioners took the same continuing ed courses as the Family docs and our practice levels were expected to be expanded. . So the movement to increase SDM must include all practitioners in not only medicine but other medically related fields.
An aside: I do remember very well a visit I made to a psychiatrist. I think my parents thought it was a good idea as I wanted to join the Navy at 18. I visited him once. He was huge, enormously large and thereby intimidating, smoking a cigar in his office (I couldn't abide that), and he said not a word. Not a greeting, or how are you or what seems to be the problem? He was silent. And, therefore, so was I. A solid 50 minutes of contemplating- each-other-silence. That was not an example of SDM.
Laughing, she rolls away!!
Support, Information, and time to absorb everything. It is so overwhelming. The seminars were very helpful not only the guests but the other MS'ers talking, exchanging ideas let's
you know you are not alone.
I don't have a lot of time to deal with MS treatments that do not work for me.
Other than constantly reading the news, etc. These online forums and Facebook groups have been especially helpful for me. While I don’t need the emotional support most of the time as some do, I have learned a lot from people sharing their experiences. So I would say more of that.
My doctor and online MS info/support groups ❤️
Here in the Seattle area, we have multiple great M.S. clinics (i.e.-Swedish; UW Medical; Virginia Mason; Evergreen; etc.) and many M.S. peer support groups to keep us well informed on treatments and options.
I am envious. I miss the west coast so much. I am hoping I will see it again before I become a wraith like soul.
Many things are different on the west coast especially in Oregon and Washington. Many things. The east coast seems to constantly be saddled with caste constraints of family lines, where they went to school to get any degree, and money. It is very hard to find a common ground with the rich when you are trying to just maintain a resemblance of a controlled life.
The internet has certainly changed the availability of information. When I was first diagnosed i had to count on a physician for their expertise.
Time is a big problem for me. It's a full time disease that requires full time attention. I can't take care of pt, tests, specialist appointments, regular health appointments, insurance and healthy eating and care for house, children, spouse, aging relatives etc. I skip a lot of self care to care for others first especially when I "look fine".
I know there are resources out there and available. I have to get the energy and time to use.
MSAA Online Focus Group - Day 5
What would help overcome the main barriers to SDM? Are there any specific areas which are particular unclear or hard to find information about? E.g.
- Resources - support and local services etc.
- Information - to learn more about the treatments available, etc.
- Time
I know this is an MS forum and therefore primarily concerned with MS but I am so much more than my MS. Other stuff, lots of it unfortunately, and more as I get older, goes wrong we me.
A specific thing that would help overcome a major barrier to shared decision making is a GOOD PORTABLE electronic health record, availabel to all my doctors, that accurately lists such things as all current medicaions in one area, and drugs that have been tried and stopped and for what reason in another.
Instead, each doctor or practice has their own EHR system, whcih sporidally lists some items and not others. You should not have to explain the ame thing over and over. For example, my husband developed a life threatening reaction, angioadema, to his blood pressure drug lisinopril but he has to explain that to every doctor he sees.
I agree with you. I have been on so MANY different drugs because of migraines, infections, pain , anexity etc. I have not kept track because I was too sick from severe exasperation cancer losing my job insurance grieving the loss of my mother my cats. These clinics hospitals need to get their poop together and do for the patient. Sorry about my attitude. Life can be hard at times and frustrating.
God bless you ALL
For me the online forums have been a God send. I live in Redding, CA , the largest city North of Sacramento. We have a population of about 100,000 and we’re considered a rural area so resources and doctors are few. We have one support group which is pretty good, although I never get up on time to attend. And only two neurologists who are not very good although they claim ms expertise. My only choice is to travel 4 hours to San Francisco to be seen at the UCSF MS Clinic. On Monday 5/6, I had an appointment for my second Ocrevus infusion at a local infusion center but I received a call a few minutes ago that the pharmacy that provides my medications is no longer allowing them to administer Ocrevus infusions. Although my health insurance, Anthem, authorized them for my infusion. I better start making phone calls.
Yes, good question! I have often thought about starting one for women of color. BeingILLMated was created online by three powerful women all with an incredible journey and background. My hospital has a support group, but my hospital is not minutes away,
but it's worth the ride with caring doctors and staff.
Doctors offices could have a handout listing credible resources to obtain further information. I know some carry brochures for a variety of things but one reference with all the resources would be easier. A handout listing all available DMTs and the pros and cons of each as well as info on treatment for the various MS symptoms. People could be suffering with a symptom not knowing there is help available.
We all obviously found this resource but I am sure there are people with MS that do not k ow about it.
A lot of programs out there are during the day during the week when a lot of people work so difficult to attend so programs, support groups or classes in the evening or on Saturday would be awesome
Wow, so many good replies, though I could not get through then all.
In short, I was so lucky in having multiple top qualified M.S. Neurologists, that spoke on / for m.s., to other neuro's...
They were not only well aware, also in contact with , or M.S researchers themselves... When you run the M.S. section of a Major teaching hospital...or travel abroad to speak to other Neuros..
And yes, THIS SITE! If you hear directly from others suffering with M.S., and their talk about, what works, what doesn't for them. What they heard....
Great help. Thank you. Everyone!
Rankings of qualified MS centers and what they specialize in. Where to find good PT’s OT’s etc.
I would like to be able to see a PT who is experienced in MS. I have had a lot of physical therapy because of my MS. But the PT were not familiar in treating MS.
Plus message for people with MS. I take an adaptive yoga class just for people with MS. It's changed my life! Love it!
I have also been a part of a class for MS people for I think eight weeks a few years ago. We talked did work on paper tracked our heart rates etc. It was an excellent program to be a participant.
I would to take part in one again. It helped me also with depression.
Like many others, there is a dearth of support groups in my area. Anytime I run into someone with MS, I try to engage them in conversation, but I am not always successful. If it wasn't for groups like this or Patients for Me, I would definitely feel a sense of isolation. Still, there are many days when that, if I had another MS patient to talk to, it would help lift my moods out of the doldrums. It would also help to have soneone who is going thru the same issues. The last tie anything local was put on for MS patients, it was a fundraiser and the people doing the collecting were all MSers. Funds were sent to our state MS office and we never did know what it was used for. I was asked to be a representative and donation collector for two years. Unfortunately, I never saw any of the funds we raised returned to our community in the form of goods or services.
Thank you for your observation. It concurs with mine. I think the number of people with early MS is far larger than is counted at this time...3,000,000 out of 330,000,000 is too small to be politically or medically powerful. The denial process of onerous and their families don't help much. Without societal help and family help many just accept all this as part of the aging process and can't imagine the number of cerebrospinal diseases that cause similar symptoms at least at certain stages of the diseases. And most people really don't know where to start finding information. We are too few in number to be potent legally or medically.
we need ms centers locally and more places to reach out local(support,financing info,info on new meds,etc.) I have to traveled 96 miles to get to an ms center.the insurance companys decide our treatments and what medicine they will cover and where they will cover it,I guess because there is no "proven"cure,they have made the decision for us,we wouldn't have to fight this hard for another "curable"disease.I think financinig is based on age,I am 64 and it seems if you are younger you are more likely to get people(dr,insurance,financing)to want to work with you,it just may be my circumstances.I don't want to seem ungrateful' I have been very fortunate having my meds covered,not always easy
In my response to goatgal I made some observations that may or may not be apropos to your main question of today. I was shocked after reading to find lists, literally, of cerebrospinal affecting diseases with core symptoms very much like ours with MS and very little to nothing done about how they are functioning and surviving in our society.
About training for SDM, I think the selection of people to interact in such a give and take situation needs to be carefully done. Empathy, a primary essential for good SDM interactions, is in short supply in large institutions except from specific individuals.
Empathy can be taught though I do not know how successfully. It may not be in the MD curriculum. For example, I have a large osteophyte on C1-C2 that makes swallowing difficult at times and choking an occasional problem as the swelling hangs down my throat behind my tonsils.
The VA neurosurgeon I saw said,"Aren't you ashamed of taking our time and effort for this type of surgery because you are so old and will die soon anyway when a young veteran who needs help might be denied?" I was shocked. I did report this event as there are far more OLD vets getting services than young one--at least that is my observation. If they are all treated as I was I expect they will not try very hard to get medical care. Or, maybe this older surgeon himself does not like women vets. How would one know?
Knowing if there has been buy-in from individual Doctors to embrace SDM - and what SDM means to them. So a patient would feel comfortable with using SDM techniques.
I did go to a support group but since my husband passed away, I don't have transportation. Through Agency for Aging, I get Meals on Wheels Monday through Friday, home health aide: 2 days/week for 1.5 hours and 1 day 2 hours for showering (I'm in a motorized wheelchair, so they use a gait belt to lift me in and out of the shower), light housekeeping and grocery runs as needed and laundry. I also have access to medical transportation, but they need 7 days notice and if you need something in 2-3 days, you need to get a handicap cab and they aren't always available. I need help to get in a car, so socialization outside of my house is almost non existent.
I love what happens in support groups and think it is one of our main helps. also this online group. also fond of chair yoga which currently is not available at a time I can go. I'm sad about this
You have introduced me to this and I am researching it, new to me
What is SDM?
