Teleneurology fatigue

T

Barts-MS rose-tinted-odometer: ★★ (Fatigue Friday has to be a midnight blue day #191970) 

Everyone is asking me what COVID-induced changes to your MS NHS service will you keep? What will be the new normal, etc.?

What I don’t want to keep is not being able to examine my patients, in particular, new patients.

To diagnose MS you need to show dissemination in space; i.e. does this person have clinical signs in two neuronal pathways or two different areas of the central nervous system? For an adequate prognosis, you need to assess if there are any subtle signs of damage to the nervous system. The latter can’t be done on a video link very accurately.

Yesterday, I saw a patient for a relapse assessment who had clear signs that were missed on a video consult two weeks ago. She is on fingolimod and has clearly had a relapse or may have an opportunistic CNS infection and now requires an urgent MRI. What happens if she turns out to have PML? A two-week delay in diagnosing PML could have potential consequences for this patient. 

Although we now use our online EDSS calculator to assess EDSS scores, to do it properly you need to do a neurological assessment, which takes about 20 minutes and you need to walk the patient. You can do neither by telephone or video. With remote work, we will never be assessing our patients level of disability accurately. This is particularly important to assess subtle signs for example pallor of the optic disc in the back of the eye. You can’t do ophthalmoscopy remotely; at least not yet. 

In more disabled patients I like to get them on the couch and examine their buttocks for signs of early pressure sores. This can’t be done by telephone. Similarly, the smell of being unkempt and the assessment of foot and mouth hygiene can’t be done remotely. These provide clues about who is vulnerable and not. Many pwMS in the UK are extremely vulnerable and one of our tasks is to help these patients. If you can’t identify them how can you help them.

A pressure sore, which can’t be assessed remotely.

Subtle clues of physical abuse, which is very common in pwMS, can’t be detected remotely. How many patients who are being physically and mentally abused are being let down by remote work? 

Diagnosing and managing depression in someone with MS is hard remotely. The subtle body language and demonstrating empathy often need presence, i.e. a physical presence and not a remote presence. One of my patients who I saw this week remotely is desperate for physical contact. She is socially isolated and working from home. She just wants an excuse to get away from home and see people. Coming up for her outpatient appointment is a day trip for her. We seem to forget that interacting with the NHS and its staff can be a needed social event. This is lost with remote work. 

I can go on and on but will stop here. It is clear that remote work, despite having some advantages, has severe limitations. Do you have any personal experiences you want to share with us about how remote consultations have let you down? 

This open-access letter below voices some of the concerns these HCPs have about their teleneurology service. If you are an HCP and are reading this please share your experiences with us.

Thank you.  

Thomas et al. Integration of Teleneurology within the Health System to Manage Patients of Multiple Sclerosis and Other CNS Demyelinating Disorders During COVID-19 Pandemic. Ann Indian Acad Neurol. May-Jun 2021;24(3):443-445.

Conflicts of Interest

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice. 

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.

36 comments

  • A very insightful and timely piece. Thank you.

    I think your experiences teach us how important doctors are in doing more than just treating people with MS. Your role as social worker, friend and confidant should not be under-estimated.

  • Another point. It is so refreshing to have a post that is not about COVID-19 vaccines, anti-CD20 therapies, B-cells and T-cells. As a regular blog reader you should cut down the number of posts on these topics. An update every 3 or 4 weeks would be more than sufficient.

  • Prof g curious what relapse signs you were able to pick up in person that you couldn’t remotely. In the cases of physical abuse and pressure sores the benefit of in person is clear but would love to better understand how mental abuse and depression can be better assessed in person too. Your points all make sense but would love to understand specifics better.

    • More than half of communication is via non-verbal cues that are not easily detected on a telephone or seen on a 2D video link. It detecting the slumped shoulders, avoiding eye contact and not being able to make physical contact with the patient makes it hard. I suggest you test these subtle skills yourself with how you connect and communicate with your family and friends.

  • As a pwMS and an RN from the US, I commend you for the post. Here in the US, telemedicine is touted as the greatest thing ever. Prof G, each point you brought up is absolutely true. An in person physical assessment is definitely needed. Missing the early signs of progression or relapse, or even signs of a worsening pressure ulcer and mental health decline is detrimental for any patient. People deserve better.

  • I’ve already responded to Rachel’s post to say that it’s this that so resonates with me:

    ‘Very swiftly we learn only our bodily presence is required during these investigations. No one is interested in our lived self – just our (malfunctioning) body.’

    Not only for the initial investigations leading to diagnosis, but in respect to every single solitary interaction with HCPs since! Meeting one neuro resulted in my sobbing all the way home, leaving my husband angry and frustrated. The reason?! No meaningful verbal interaction, just physical examination and clarification of what meds I’m on. Sadly my experience of MS nurses has been little different.

    Without the scales being balanced by time and focus on a person as an individual with a lived life then there is always the risk that an assessment of them physically is another distressing and traumatic an experience as the experience of having MS.

    The NHS inability to allow for more than a limit of around 20mins per apt means that you can’t possibly level up these scales. So my initial reaction to this post was: talk to them – ask them first – with the avoidance of closed ended questions!

    My latest consultation was via a phone call with a locum neuro who’s question concerning my symptoms was the single query of “Do you require a walking aid?” There’s several ways I wished he’d come at this: ‘How are things going?’ Or perhaps: ‘When I mention the word symptoms what comes to mind – what do you tell people about?’ Even about a walking aid could have been more openly asked about with: ‘Are there any ways you support yourself or help yourself with your walking?’

    So yes, my experience is consistently that of the malfunctioning body, with no attention given to the lived life.

    As physical examinations are after all just one of the tools in the box – albeit, I acknowledge, a vital one, I think many PwMS will benefit if all HCPs provided the lived life with more focus and attention.

    I’m sorry to read of the case you’ve referenced as this so clearly illustrates the essential role for the expert physical assessments only a neuro can undertake. However, my point in response to this and Rachel’s post remains valid, I believe.

    • This is why neurology and medicine, in general, is an art and not a science, otherwise, it could be done by robots and algorithms.

    • I am a nurse as well. I believe we are more sensitive to Insensitivity or ‘check the box’ care.

      Because we sought education about ‘whole person’ patient care- we know the importance of a HPI (history of present illness), the rapport with a patient that leads to a meaningful, trusting relationship and the value of body language communication.

      In MS body language takes on a deeper meaning- not just affect but also body mechanics. Providers see things that we ourselves may not notice we are compensating for.

      Eye care- assessment of eye function and retinal and macular areas absolutely cannot be assessed via video and these exams and observations can provide early clues to worsening disease- or other health issues.

      I believe MS care is one that absolutely needs to be done comprehensively, in person, at least once per year, preferably twice.

      I do write below in favor of vid visits but that is due to my center’s lack of all of the above during an in-person visit.

      I was actually shocked when vid visits were allowed for MS. I understand why, but if you are going to the grocery store- surely a medical center could provide a safe environment for certain diseases, like MS, that really require a thorough physical exam.

    • One of my drs did remote with the phone and no video and I could hear her typing her notes as I spoke. Her typing would pause, she’d ask a question, I’d respond and I’d hear typing. I said something serious in my mind and said “uh huh” in the same way my husband says it 🤭 and typed. I get it’s new for everyone, but this kind of appointment can’t be satisfying for her either. Another doctor that I generally find very attentive called at the end of her busy long day and video conferenced me, but she looked frazzled, perhaps first time she got to sit alone in a room, and began smoothing her hair and arranging her clothes as she looked at her reflection in monitor while I spoke. Doctors must not be pressured or forced to see more patients because it’s “only” a remote visit. On the up side, early in the pandemic i had a remote video pediatrician appointment with my child. A staff person called ahead to walk me through set up for remote, an automatic process let me connect to remote appointment and run a test link up. The pediatrician might as well have been a hologram! she had my daughter cough, open mouth, answer detailed questions about her symptoms. It was followed by dr’s diagnosis and treatment plan. I couldn’t believe how much it felt like an in person visit. The summary of visit and prescription were immediately sent to us through dr office portal. Bravo. Telemedicine is great tool, but it has got limits.

      • Thanks for addressing the sticky issue of caregiver abuse. I am familiar from prior work that this is well documented. Neglect doesn’t have to be purposeful. And physical abuse can sprout from the Huge 24 hour non stop burdens put on a care givers and partners’s shoulders. I’m sure In person visits also allows medical staff to identify and offer resources to overwhelmed caregivers. If you are a caregiver of a pwms and burned out, know you are not alone, the experience is common, and there are resources to help. Here is link to article with additional resources in US. Coping With Caregiver Burnout When Caring for a Person With Neurodegenerative Disease: A Guide for Caregivers https://www.archives-pmr.org/article/S0003-9993(16)31291-6/pdf

  • I appreciate video visits. My drive to my MS Center is 1.25-1.5hours one way. This is exhausting.

    My center is remiss in doing a full Neuro exam at every visit- my last ‘monkey exam’ was in 2018 at a different center!. This is a new development when the lead Neurologist moved on in 2015. So if I’m not getting a Neuro assessment anyway- I will gladly skip the hassle of a 3 hour round trip drive.

    I am actually concerned they will ask me to come in for my next check. Hopefully I can skate by with a vid visit later this month. Then I will be left alone for 6 more mo this.

    I do desire a new OCT exam (can be done at the same location during a routine exam) and an analysis of all mine to date. I would need to appear for that and would be glad to.

    I am in the US- so this is no knock on the NHS- and am currently seeking a new comprehensive center. I will likely have to fly but good care is worth the expense and time.

    Short answer- vid visit for a lazy neurologist and extensive travel for great comprehensive care.

  • Thank you for this post, as we have been considering use cases for ongoing remote support in the field I work in, viz. Audiology. It seems to me that there is a time and a type of person for whom the continued use of telecare would be an asset in my field. Being able to adjust amplification devices within the environment they are actually being used in and where there may be difficulties is a definite plus. Not being able to see into the ear canal (not so much!).

    However, my experiences with remote care in relation to my MS have been less than stellar, but in some ways not that different from my in-person ones. The feeling I have of a huge time crunch to take inventory of my symptoms, meds and get me off the phone or out the door is the same. Let’s just say my follow-up in-person appointments (to my eyes anyway) have never been as thorough as you describe above. In fairness though, maybe my Neurologist is using a stealth mode!

    I am aware that Neurologists in my region have huge case loads, so the time crunch I can intellectualise and understand. However, I agree with some other commentators that the apparent lack of any interest in me as a multi-faceted person who is trying my best to work full-time and live with this disease means I don’t feel I am really being heard. Therefore I always come away from my 15 minute appointment with stats and updates on MRIs, EDSS scores and data on medication efficacy, but not a sense I am working with a partner to help me keep doing as well as is possible in what is meaningful to me. In my case this means an opportunity to do better (not just good enough) at what I love to do, which is work within my profession. (I realise I was lucky to find something to do that I love.)

    Now – the topic was looking at the some of the limitations of providing MS Neurological care remotely. I have wondered off a tad, so let me try and find my way back. While I can see definite limitations and subtleties that are lost given the examples in this post, I would say we will continue to see “just good enough care” either way until there is more partnership to work towards “the best possible outcomes” when we have had a meaningful discussion with our Neurologist as to what our goals are. These will change over time, but at least we would then both be working towards the same goals and we would feel less like a statistic and more like a fully formed person! It would be interesting to see if a model like this could actually end up being more efficient (cost and time-wise, as well as outcome wise)? Maybe it would cut down or slow disease progression, more need for social and medical supports and more medical appointments overall?

    Apologies for the ramble – this obviously pushed a button or two.
    Thank you again for these wonderful blogs Prof. G

    • Jan,

      I appreciate your point of view. It made me think of a potential reason for the disconnect felt between patients like us- blog readers – and the ‘average neurologist’.

      In the very recent past, and even now in most research in MS the outcome measure is the degree to which MS worsening is Slowing- not is MS improving, not have we halted progressing- but have we even slowed anything down.

      This historical view is based on the idea that MS is a Chronic Progressive Disease- meaning 1- chronic- no cure 2- progressive- will inevitably worsen.

      So if you could slow worsening this was a clinical win. Most of us PsMS would not consider this ‘a win’.

      The doctors and patients involved with this blog believe More is Possible- We can halt MS- at least for a while- can we reverse some function? Can we get close to a cure?

      We all hope to cry Yes in unison.

      But if you completed medical school 25+ years ago and do not attend every conference and read every research article, you are relying on your understanding of the “Natural History of MS” taught to you all those years ago- the belief it will never go away, and it will inevitably worsen.

      This blog gives us hope that the tides are turning- especially for the newly diagnosed, but not just them.

      We have seen years of research showing that we can no longer hold up “The Natural History of MS” as a valid paradigm. With good, early care and interventional mid-disease care, some of these core concepts are changing.

      Do we still live 10 years less than our peers? Once this was accepted, now we question if our interventions are altering this.

      As informed patients we expect our neuros to be on board with us as we discuss large and small ways we can tweak our treatment for better outcomes.

      When some cannot be even bothered to do full Neuro exam- including eye evaluations and social impacts of the disease, it remains unlikely they are the up to date journal reading type.

      We are caught between the hopeful science and the lagging application of this science.

      Maybe the ‘newly minted neuros’ are our best hope- because not everyone can be a patient at Barts.

      Frustrating, yes, but a possible explanation for some of this patient-expectations vs neuro performance disconnect.

      My resolve – find another neuro.

      • Felicity,

        Thanks for your post which captures many of my frustrations eg:

        “So if you could slow worsening this was a clinical win. Most of us PsMS would not consider this ‘a win’.”

        The losses with this disease as you work your way up the EDSS are unbearable. We don’t seem to be any where near halting the disease once it has started – I’m talking about neuro-degeneration not relapses. Prof G’s posts about Ocreluzimab (great at stopping relapses / not so great at stopping the accrual of disability) was a kick in the stomach. I like my near, but I still don’t think she gets my underlying worry of where I will be in 3, 5, 10 years. Flipping the pyramid looks the way to go, but we still wait for the neuroprotection, remyelination and neuro-restorative therapies. I have no sense how close we are to any of them, but if time is brain, they can’t come quickly enough.

      • Felicity,
        I went through 3 neurologists before I came to find my current one. As an RN we advocate for our patients but it’s just as crucial we advocate for ourselves!
        If the care you are receiving is subpar, let them know what you expect. during your exams.
        It sounds like you have made the best choice for yourself and are switching neurologists.

        • Cindy,

          Do you mind sharing your choice of neurologists?

          I am an RN in the US too. I don’t know how to initiate personal communicate directly from here. But I am willing to try (such as joining Shift.MS or another forum (im not on Facebook).

          If not, I completely understand.

          • Felicity,

            Do you have an e-mail account? I don’t have Facebook either or any other type of social media account for that matter.
            I am not opposed to sharing e-mails if you want.
            I live in the outskirts of Pittsburgh, Pennsylvania. If that helps.

          • Thank you for pointing out the lack of my ability to process information in a timely fashion before I write it out. The demeaning way you speak to a pwMS is a fine example of the mental/emotional abuse that would be missed on a telemedicine visit. Kudos to you!

            ps. I took a much longer time to think this out before I wrote it out. I hope it is much more satisfactory for your liking. The world only knows that the main goal in life for anyone who has MS is to make sure others are comfortable when “dealing” with their cognitive deficits.

          • Cindy, that was my email address I was trying to convey without putting it out ina complete format like myname @ post.com

            I guess I was too cryptic- I meant no disrespect.

  • Prof g curious what relapse signs you were able to pick up in person that you couldn’t remotely. In the cases of physical abuse and pressure sores the benefit of in person is clear but would love to better understand how mental abuse and depression can be better assessed in person too. Your points all make sense but would love to understand specifics better.

  • Abuse does not have to be physical. It can be very subtle. Emotional and psychological abuse exists in families. Additionally, if it is very subtle or light touch, it may well be tolerable, for a period of time. Imagine if it lasts decades. It becomes like mental toothache, nagging at the psyche until it cause either extraordinary backlashes from the abused or utter demoralisation.

    Furthermore there may be no way of confiding in anyone because the abused person feels they would be seen either as a fantasist or at worst, a liar. If the abuser is publicly charming and urbane, friends, even family members, simply will not believe what they hear. So that person simply has to live with it. There’s no way out.

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