I have been tasked with designing an International MS Masterclass to teach neurologists and other HCPS (healthcare professionals) about MS. The idea is to run four 2-day courses. I have put together the following draft programme and would appreciate your thoughts on it.
If you have MS is there anything that you want to be added, i.e. is there anything that you would want your HCPs to know about?
If you are an HCP are there any glaring omissions that should be added? Is this the kind, of course, you would interested in attending? Thanks.
It is important to realise that there is a large unmet educational need to help general neurologists skill-up for managing MS.
35 thoughts on “Help”
Gosh. Do you ever sleep?
An overall remark from a pwMS is that the empathy and understanding level amongst your colleagues seems to vary a great deal.
Many patients talk anecdotally of feeling like treatment is done to them and not with them. Many are terrified and many more hiding the terror.
Many are afraid of/in slight awe of experts so they feel very throttled when in the presence of them. They often vent later about feeling like an adjunct. Often because they do not feel at ease at the time.
Just a few thoughts to share in the course with the others dealing with this ghastly disease.
Very important point. I will add a question on empathy and the psychological response to being diagnosed with MS.
Wow, I wish I could attend this, but sadly not a neurologist!
As a pwMS, the only topic I would emphasize more is prognostic factors and how the apply for each patient. Prognosis is a difficult topic which neurologists try to avoid (in my experience) but is one of the key questions for me as a patient. By this I mean going beyond the general phrases of “disease course is different in each case”, “SoC is constantly improving”, and giving more concrete opinion on the time course of EDSS evolution or other outcomes.
On another note, is there any possibility to record the sessions or share the Powerpoint materials here afterwards? I found many questions on the list that I still have unanswered, and it would be of great help.
The prognostic factors will be extensively covered in the sessions on diagnosis and treatment.
Maybe we should run a similar course for people with MS? Or set-up an online MOOC (massive online learning course)?
Yes please to the similar MOOC!
That was my first thought when I read through that fantastic programme…. It was be amazing if any of it could be repurposed into a MOOC for people with MS!
If you consider this, please please write in stead of making video. Reading gives the opportunity to absorb the information in my own mempo and order, and it can be indexed an searched far better.
this is fantastic— one thought: did you go light on MRI due to access restrictions? Otherwise perhaps you can add a case that prompts a deeper discussion around MRI —the need for vigilance in surveillance for subclinical activity, rebaseline MRI, use of gadolinium, prognostic significance of cord lesions, etc.
this would be great context in which to do a pre- and post-test to assess effectiveness of a particular educational resource or modality to understand what drives better understanding in an educational approach. what are the concepts/data/graphics that best support comprehension and facilitate the ability to educate patients. thinking here about the best ways to represent the diagnostic criteria so it sticks, also an opportunity to share several of the graphics illustrating disease course (eg,, the topographical model) and see which ones best enhance conceptual understanding of disease.
also, perhaps the course reading can be made into a etextbook to share more broadly…
Thanks. I think we should add an additional session on managing MS in resource-poor environments, where access MRI is poor.
This is really comprehensive. As a pwMS is want the biggest takeaway to be more urgency to hit this disease hard, sooner. Is there a way to get there? For example, 30 year old woman with baby and full time job shows up after recent diagnosis asking for second opinion ok treatment. She’s leaning towards nothing becatshe feels fine. Her MRI shows active lesions in brain and spine. How do you convince her she has a golden opportunity to minimize this awful disease if she starts with high efficacy treatment now?
Secondly as a patient I feel one area that’s lacking is helping a patient diagnose how long they have had MS. By diagnosis most have already had it for years, and age of onset is very important for certain prognostic markers. The medical community simply tells patients age of diagnosis leaving the patient to try and guess age of onset for themselves as they sort through medical literature. Seems this should be a standard part of the diagnostic process especially as many patients have been dismissed by doctors for years before they are finally diagnosed.
Finally Thanks for asking our opinion! Agree with Dom, more listening among many neurologists please,
RE: M.S Masterclass
From my personal experience as a patient with Secondary Progressive M.S I feel that there is a failing on our GPS part in the sense that they should communicate, Educate, and be more proactive when getting an M.S patient the help that they need as a matter of urgency. I know sad to say they are inundated with patience but surely there should be some criteria regarding urgency.
1. Surely it is well established that MS has several causes. So why say cause? Eg: Genetics, viral infection, latitude/low vitamin D etc.
2. Lumbar puncture. A painful and hated procedure. Surely outdated now have MRIs?
3. Prognosis. Perils of making a prognosis at time of diagnosis. Eg benign MS may not stay benign forever.
4. No mention of Vitamin D?
5. OMS does not preclude tsking DMDs alongside diet, exercise, meditation etc.
Thanks for asking! As an MS patient who is also a disabled Neuro nurse, I feel a few areas would be nice to add. Outline all the symptoms, including psycho-Social, financial stressors, relationships.
Depression, anger. I never knew what MS rage was until a patient’s wife explained. I had it too. Show Interview tapes of actual interview/assessments. Teach listening skills. In USA the right to self determination. Decision making matrix. Help Patients see the future, plan for it. Reassuring them at the same time. Humor, keeping it Light where you can is essential. I like emailing my Doctors with nagging questions easily answered. I would eliminate waiting rooms and have patients enter exam room and sit at the computer and do a questionnaire first. My article about medication adherence and how it’s a fine line between being religious about taking DMT’s or giving up. https://traveloguefortheuniverse.blogspot.com/2011/09/wheelchair-repellant.html
Good luck! 🍀
This is a great idea, I agree with all the points made.
Something like this would be great for
MS patients and their families.
Continually being talked down to, especially at diagnosis was extremely annoying. I think, like most people, I will go and find something out if I don’t understand. I used to take notes.
As a pwMS I had to fight extremely hard to be put on Alemtuzumab (previously treated with Copaxone and Fingolimod)
I had followed the clinical trials and deemed it an acceptable risk. Trying to discuss this with MS “Specialist” nurses at the time was meet with derision as they had not heard of it let alone been sent the brochure “summary of product characteristics” by Genzyme.
I would rather a HCP said I don’t know, let me get back to you. Rather than shutting down the conversation due to their lack of knowledge. In my experience this mostly happens with MS nurses. I also find the term MS “Specialist” nurse to be extremely misleading in my experience.
This blog is a great resource for all interested. You and the team keep up the excellent work and a huge thank you.
What strikes me from the above, is what are neurologists being taught at medical school? I imagine that headaches, epilepsy, Parkinson’s and MS must be amongst the most common conditions which a neurologist sees in the clinic. However, the training class above gives the impression that the attendees knowledge of MS is likely to be minimal. Anyone diagnosed with MS should be seen by an MSologist not a general neuro. The neuro who diagnosed me was a Parkinson’s specialist and had very little knowledge about the latest treatments etc. A bit like taking your Ferrari to a Skoda dealership – out of their depth. In addition to this sort of training, a non-MSologist neuro should spend three days every five years work shadowing an MSologist at one of the UK’s MS centres (Cambridge, Barts etc). This would bring them up to speed with treatment options and provide exposure to real life cases.
There needs to be hope in the MS world. Not just meds, which are certainly a part. Please include information on neuroplasticity and exercise that targets the creation of new neural pathways. As an MSer, I need to feel I am doing something to increase my abilities and relative independence. Can I reference “The MSGym” which is an online program that supplies support and tools for all aspects of MS issues?
This is wonderful. Wow!
Maybe we could teach them a class on how to provide hope and support. My new neurologist just told me she could not help me with sleep or anxiety issues. That I need to go back to my PCP. The. Negated everything I had to say. What the? Diagnosed in 2001, I have seen everything. We need doctors that we can talk to and who listen. I asked her about which dMT and she said she’d have to research. She was googling it online as I met with her. And this is the MS expert covered by my insurance in my 10 miles radius. And I live in Los Angeles area. My diagnosing Neuro retired. Haven’t found a good one since who’s covered by anthem blue cross HMO. Anyway I digress. I just really appreciate all you have here. And yes let’s do one for pwMS. In face I’m covering a lot of this in my book. Maybe we can chat?! #takeTHATms!
As a foreword I should mention that I have only recently been diagnosed, and so my feedback is based on my experiences so far.
Firstly, would say neurologists who do not specialise in ms might find it difficult to pursue a diagnosis if someone is not presenting in a typical fashion. More investigation and consideration could/should be given to a family history of MS however distance that family member may be, plus what the patient’s medical history is, lifestyle, and actually just how the patient appears to them in clinic, even when initial MRIs come back inconclusive. (to give you some background here, the neurologist I saw initially kept saying that my symptoms were psychological without taking in to account that I did not have a history of severe anxiety and panic attacks, and that I also had a relative with MS).
Secondly, upon diagnosis it was recommended that I looked at the MS Trust website, and this is where I based my decision on about which dmds I wanted to go on. The MS Trust website is very informative, they have a ‘decision making tool’ on it to help pwms decide which treatment options are available to them. For me being newly diagnosed, I wanted to be on the most effective dmd with the least side effects (N.B. the decision making tool lists the dmds into 3 categories – moderately effective, more effective and highly effective, and details which of them are available to you based on where you live in the UK and what type of MS you have) The notion of maintenance escalation vs immune reconstitution therapies was not something I had considered. If you are newly diagnosed, do you need to know this, or do you just need to know which is going to help limit the number of relapses and therefore your disease progression the most, whilst fitting in to your lifestyle the best?
Re. Overcoming MS, step 5 of the programme does discuss taking medication – Professor George Jelinek took Copaxone himself for 7 years. So the example you have given is at odds with what the program details. Also, while I am on this subject, I do need to bring to your attention something which is confusing to some who is newly diagnosed with rrms. I am following the OMS program as it is something which I feel I can do myself to make a difference to my disease progression (and for a long time it was the only thing I felt I could do to help myself when I thought I did have MS and had not been diagnosed). Professor Giovannoni, your name is on the back of the book… you write that you would recommend it to your patients and to your friends and colleagues. However, one of your team at the Royal London is my neurologist and they do not recommend the OMS program. There is a very confused message going on here – especially for someone who is newly diagnosed, who is already processing quite a lot of information.
I know I have pointed out some areas which could possibly do with a little more thought. However, to finish on a positive note, the idea of having an International MS Masterclass to educate neurologists and other HCPS is brilliant! I am assuming that there have been quite a few advances in the treatment and diagnosis of this disease over the last few years, so to update these professionals on their knowledge of MS will be hugely beneficial to many I am sure.
Hope you will find my feedback of use.
It can be a minefield when newly diagnosed. This is a great place to start, shift.ms is also a good resource and the 10in10 family are awesome. I wish you all the best, hope some of it might help.
Prof G has written extensively here on the way his endorsement of OMS was taken out of context.
I don’t think the case study involving the patient choosing the OMS program and declining DMT is a universal representation. Many who subscribe to OMS also are on DMT though I’m certain neurologists must frequently encounter patients who want to decline medical treatment and approach disease management through lifestyle only.
Really comprehensive and thoughtful study days. I would love to hears.l the discussions and management plans. Thank you for making the seminars Pwms friendly. For the record I have an EDDS of 7,,
As pw PPMS I feel it would be good if my neurologist would realise how disheartening appointment can be they have little to offer me I would appreciate it if they could give me time to at least say how things are. I would also love for the opportunity to be referred into a centre of excellence- if only we had them- I feel it is good to update neurologists but would prefer they had a centre of excellence to refer to themselves
Professor G just so that you don’t have to reinvent the wheel there is a course that is being offered out of Australia through the University of Tasmania and it just begins this week. It is through the Menzies Institute for medical research. Check out www.https://ms.mooc.utas.edu.au. they offer a course on dementia as well.
Again it is through the University of Tasmania in Australia anyway just beginning the course this week.
Yeah, this is a great course. I did it earlier this year, but it really doesn’t offer any information on the different treatments for MS. In my opinion it is aimed much more at pwms and their family and carers from a social health perspective, and that is great, but it really doesn’t give an evidenced based analysis of treatments. This is where Prof G could contribute.
There are a few posts on this blog about that MS MOOC.
Don’t get a referral in February from the GP which ends up with a first consult in June then an MRI in July with an appointment scheduled in for NOVEMBER and expect the patient not to be psychologically traumatised by it.
I suppose it’s not individual HCP’s, but the “system” who need to remember that that amound of uncertainty can drive people mad. I shaved off with men’s hair clippers my shoulder length hair not long after the MRI because I knew I had to wait until November to be told it was MS.
Tell HCP to never underestimate the psychological impact, and please tell the MS nurses to stop with the blase comments like “everyone is different and we have no idea what so ever how it will progress for you”……it just induces more terror
That program looks great!
I was wondering if more emphasis should be placed on treatments (DMTs) and how to think about them?
Day 1 4F. What is the difference between maintenance-escalation and immune reconstitution therapies? How are you to explain the difference to them between these two treatment options?
I can imagine that there is more to say about treatment options. There are new MS medications on the market that are “game-changers”. I believe that (as illustrated in the funny video of Aaron Boster) ‘old style’ neurologists could vastly improve their patients’ outcome by changing the way they prescribe treatments (and talk to their patients about the options)
I need all these questions answered so they can be shared with my neurologist!
This looks really great! One question I came across a lot when working on the MS Society Help Line is how to recognize a relapse? Lots of newly diagnosed patients can’t decide whether a recurrence of a previous symptom can be classed as new activity. It’s a very blurry area for many people. So how to counsel people about when to seek help from their MS team, how to tell what’s an exacerbation from a true relapse.
A lot of other people have touched on this so maybe I am repeating others, none the less…
Here we go, the HCP must be able to show empathy and engage with an MS patient plus consideration of social capital/social prescribing should be added. All three of these problems become more and more important as the MS becomes more advanced. You might not be able to cure or resolve these mental issues but at least teach the HCP how to recognise these problems and give them sign posts to resolve these issues. These comments apply mainly to course 2 and 3 but empathy and engagement apply across the board
Might it even be worth getting people with the lived experience to come in and talk about their experiences
I have tried everything going since my diagnosis. Vegan, veggie, paleo.
I now just intermittent fast, vit D supplement and exercise as much as I can.
This make me “feel” like I have an element of control. Which helps me feel better, but if I’m totally honest, lemtrada has made the biggest difference for me.
Not without its downsides, I now have Graves disease, as a result. I knew this was a 50-50 possiblity before treatment, for me I deemed it an acceptable risk.
Do all that OMS stuff if you can be bothered. My advice would be, your time would be better spent researching DMT. Get clinical trial data, peer reviewed papers.
If for nothing else you can tell people who read about a cure for MS in the paper, they don’t know what the @£&+ they are talking about.
District and local councils have important roles when it comes to social prescribing. Firstly, with their responsibility to keeping communities healthy and secondly, their strategic role in engaging health and primary care professionals to make referrals to community-based programmes and services.
With this in mind, do hospital based HCP’s have good working relationships with local and district councils? Is this something the HCP’s could tap into, to make easy referrals ?
This is a great initiative ProfG! Thanks once again for everything you do for pwMS and their HCPs.
To echo what other have said, could you either setup an online MOOC or record and upload on the internet the Masterclass you are designing?
This might be old news, but these guys from “down under” offer a basic, but pretty comprehensive course:
Worth having a look?