#MSCOVID19 & education: changing the way we manage MS one young brain at a time

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Barts-MS rose-tinted-odometer: ★★★★★

At Barts-MS we spend a lot of time teaching people about MS. It is not only important to generate new information (ideas, testable hypotheses and research), but also to disseminate knowledge (teaching). However, with the COVID-19 pandemic and the resultant social distancing, almost all teaching has gone online and that does not make for very engaging and interesting. Most of us are webinar-ed or Zoomed-out. I wrote a piece on Medium that I titled Zoomed-Out addressing this exact point. 

Can we make teaching the next generation of potential MSologists more interesting? I think we can. The following is an example of case-based teaching we are trying out at our first MS Academy Basecamp in a few week’s time. Let’s hope it works and it encourages more junior doctors, nurses, therapists and other allied HCPs to plan a career in multiple sclerosis. 

Scenario 1: You are called to see a case with double-vision due to an internuclear ophthalmoplegia (INO) in casualty and an abnormal MRI suggestive of MS.

  1. How are you going to confirm the location of the lesion?
  2. How do you diagnose MS?
  3. What MS mimics do you need to exclude?
  4. How do you profile the patient’s prognosis at baseline?
  5. Is the patient eligible for DMTs?
  6. How do you de-risk the DMTs?

Scenario 2:  Your consultant asks you to see a young woman of 26 with her partner. She is coming for a scheduled follow-up appointment after a diagnostic work-up for MS. The consultant tells you she has MS.

  1. How are you going to confirm the diagnosis of MS before seeing her?
  2. How are you going to tell her the diagnosis?
  3. How are you going to counsel her about her future disease course?
  4. She asks if she can have a family. What are you going to tell her?
  5. What is active MS, highly active MS and rapidly evolving severe MS?
  6. 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? 

Scenario 3:  You are asked to do an MS follow-up clinic for your consultant neurologist? 

  1. How are you going to prepare for the clinic?
  2. What information are you going to record in the medical notes?
  3. How are you going to investigate and manage an MS-bladder?
  4. How do you manage MS-related fatigue?
  5. Should you routinely screen for and manage MS-related cognitive impairment?

Scenario 4: You attend your departments, MS Research Day, for patients with MS and are asked to prepare a teaching session for the attendees.

  1. How do you explain the cause of MS to the attendees?
  2. What are the latest treatments available for progressive MS?
  3. A woman attendee asks you about the risks of her children getting MS. What do you tell her?
  4. An attendee asks about stem cell therapy; how are you going to counsel her? 

What would you want us to teach the next generation of MSologists and how? 

CoI: multiple

Twitter: @gavinGiovannoni  Medium: @gavin_24211

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

18 comments

  • I would like to see more teaching of RLS. 30% of MS patients will have RLS, probably due to spinal lesions. Of these, at least 2-4% will have severe RLS causing very disruptive sleep & worsening of MS as a result. Treatment with low dose opioids, particularly Buprenorphine and Methadone should be researched more and trialled. It is first choice treatment by US experts like Dr Winkleman and Dr Buchfuhrer.
    Sleep quality is extremely important for MS patients. I know I sound like a broken record. Treatment of RLS is abysmal in the UK with most neurologists unaware of the risk of Augmentation on dopamine agonists and unaware that withdrawal is more difficult than getting off heroin.

  • Prof G,

    It’s ironic that for most people with MS they will lose their jobs or retire prematurely yet for those in the medical profession an aim of teaching courses is to encourage “more junior doctors, nurses, therapists and other allied HCPs to plan a career in multiple sclerosis.”

    I would hope that the need for a medical professional to have a career in MS would diminish. Surely with advances in technology and advances in blood / spinal fluid analysis, a quick and definitive diagnosis should be achievable soonish. Combination therapies to address smouldering MS, protect nerves and encourage repair are surely achievable within a decade.

    We should be looking at a future where MS in more like Type 2 diabetes – easy to diagnose, lots of effective treatments, and good guidance on the lifestyle that should be followed to maximise health.

    I would like to see a glass cabinet in the history wing of the Royal College of Physicians of an MSologist at the turn of the 21st
    century – the mannequin would be a white male, wearing a bow tie, with a tuning fork in one hand and a Copaxone syringe in the other. What’s worrying is that in 2020 there are few of these dinosaurs still around.

  • Good start. I think offering more of an online course or chat opportunities After the big Doctor visit where you, as a patient, get the bad news and a menu of drugs you can’t begin to comprehend. Blah, Blah, Blah is all you can hear after being given such an emotionally charged diagnosis. I loved being an inpatient neurological nurse. Once diagnosed with Multiple Sclerosis, my entire view changed. You need patients to give a few classes too.

  • Hi Prof G, thank you for the post and I agree with lots of the comments too! I feel as a pwMS that on diagnosis – you need to give the patient time to digest, grieve for the loss of being well and the fear of what the future holds, but most importantly – alleviate or support the symptoms. This should be (ideally) a lifetime of ongoing support – with cognition (psychological support) which is extremely worrying for a pwMS and to offer a suitable DMD.

    Once the DMD is offered – the patient also needs time to look into the drug and its impact. Share this with a family member or friend – so that they can be emotionally supported with taking the medication and a reminder that it is hopefully (no guarantees) to stop the progression. All of this is obviously what you’ve outlined but MS should be treated differently to other conditions – as there’s no guarantee the DMDs will work – or you will tolerate the drug or that a better less side effect drug becomes available. Once you have been lucky enough to have a drug offered to you to stop progression – the choices should not stop there. Especially if more advanced drugs might be more suitable for the long-term aspect of being on a DMD. Regular ‘catch ups’ and monitoring (as always) but also discussions on how you are and responding.

    The treating of the disease is life-long and the relationships should be worked on to provide support, help and treatment for a pwMS. The older you get it appears other things start to impact the disease and all of these extra symptoms need looking after. Not left to other health sectors that don’t really understand the disease or may assume the symptom is just MS!

    I do believe patients should be contacted ideally, and spoken to – to ask how they would like to be looked after under Neurology – if a patient is lucky enough to have a Neurologist who cares and wants to engage and commits to support you and help plan – I say, that will help break down the barriers and build trust, so that the patient will have a better understanding of what is happening to them and deal with the mix bag of symptoms this awful disease throws at you.

    All the best,
    Jane

  • Great post Prof G, I have MS and am keen to become a HCP. Would I disclose my MS if I attended one of these MS Academy courses? probably not. It’s interesting to see things from both sides.

  • Question 7, 7, 6 and 5:
    How are you going to facilitate the patient/attendees on having a voice and making decisions in partnership with yourself/their HC Team, and promoting their self-care in this scenario.

  • Ask about the patient’s strengths. Ask about socialization. Who is present in their lives as a support system? Please refer to MS group therapy with a licensed psychologist highly skilled in group work.

    • …hmm MS as a career choice ?
      We should be ploughing funds into a Cure and making Savitex available for those who missed the boat/were unwilling to go without an immune system; in the vain hope of halting progression…from a patient perspective, it’s about quality of life, (not scaring the newbies and creating well paid jobs) and believe me that ain’t easy when you’re written off and left to fend for yourself as things progress…

      • Feathers we may have found a cure already, i.e. early HSCT and/or alemtuzumab and/or cladribine, but very HCPs and regulators and payers want people with MS to access these treatments early. What do we do?

        • Prof G, please can you expand on ‘early’….I know time is brain, before smouldering disease kicks and generally the sooner the better but how do we establish when it is too late? I have raised this before but the McDonald criteria of time and space and the need to treat early and effectively appear totally conflicting to me. As an example, I am within 6 months post diagnosis, EDSS 0 but it is 6 years since my initial CIS. Symptomaticly (not sure that is a word) it feels like the disease has really established a foothold in the last 9 months but Covid amongst other factors has limiting the treatment options that are available / appropriate so the newly diagnosed are all sadly moving away from the early phase and the knowledge that something more could be done – a cure, potentially – is difficult to take

  • People you at to them you have me,mostly have no idea what it is,you stay the hget tajen shopoibg but they ket yiueat affects,you sit in a,hit car sweltering while they out the shopping and your chair in the car,and return the trolly say well I’ll put the air conditioner on in a min meanwhile you feel like hell

  • I would like to read more about wellness for elderly (over 60) MS patients. These people often don’t get drugs for their MS & so are left to their own devices. How to they stop MS worsening and live a good life?

  • Maybe each scenario should include how they as a HCP would appropriately share the decision about which DMT with the patient (may need a bit more detail about the health literacy of the patient.

  • Prof G
    I do a little bit of working with Yr 5 med students as a PwMS.

    You have definitely covered a lot of the medical requirements in the outline plan.

    What the students find really beneficial when I work with them are:
    – Hearing my MS journey (that they have extracted using appropriate questions)
    – practicing eliciting reflexes on a real patient and discovering how the intensity of pressure to evoke some of the reflexes – eg Babinski on my left dropped foot
    – summarising real findings back to a consultant

    And I have several topics I always talk to them about the patient experience and important things to consider.
    I have canvassed the PwMS community on these topics and I’ve got the shortlist on my list.
    Bladder and bowel and how to get a patient to open up on this for example … should definitely be included IMO. But it is more than just including one question because that won’t work … for example.

    I tell PwMS that they should listen to advice on drugs etc. but ultimately they should be advocates for their own health

    Telemedicine makes this type of learning more challenging for sure.

    HTH?

By Prof G

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