Robotnik

R

Barts-MS rose-tinted-odometer: seeing red

I would like to thank all my colleagues who have written to me in the last few weeks in support of the blog, and what it stands for, as it emerges like a phoenix from its latest existential crisis.

It is interesting that many of my colleagues who have written to me privately seem reluctant to stick their heads above the parapet. They would rather remain as the silent majority, trapped in a system that is very difficult to escape from. I note very few MSologists are prepared to comment on or take a position on the two patients I presented in  ‘ethical quandary’. Why?

In response to the first case with ‘inactive secondary progressive MS’ in my ‘ethical quandary’ post. Yes, we are only in this position because of how we define so-called MS states. The fact that the Lublin criteria state that once you become secondary progressive you can’t go back to being relapsing-remitting is farcical and is not based on biology. Do you think MS, the real disease, has a molecular one-way switch that says RRMS or SPMS? Similarly, when someone who is NEDA-2 (no relapses or MRI activity) but is worsening (increasing disability) is classified as being inactive the classification system doesn’t necessarily acknowledge the limitations of the technology that is being used for looking for inflammation. If we are going to change things for our patients with MS we have to stand up and be counted. Maybe we should start an alternative to the Lublin committee to redefine MS as a biological disease and not a clinico-radiological entity. What do you think? I would say no. It would be better for the Lublin committee to change their perspective.

Finally, those of you who blindly follow guidelines, such as the NHS England DMT algorithm, need to question why the guidelines have been formulated in the first place. The NHS England guidelines are to make sure we don’t prescribe outside of the NICE approval criteria, which are based on rigid and very narrow cost-effectiveness models and not real-life patients as presented in the two cases in the ‘ethical quandary’ post. Please remember guidelines are guidelines and there is some flexibility allowed in how you interpret them. My position is that as treating MSologists our duty is to our patients; we have to do things to try and maximise their health outcomes, which is not only physical outcomes, but their quality of life, mental health, employment and social capital to name a few, and at the same time trying to reduce healthcare utilization. There is a term for MSologists who blindly follow guidelines without questioning them; it is a robotnik. 

Are you a robotnik? 

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.

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.

14 comments

  • Bravo to you doc & thank you. I have had multiple neuros, including MS specialists, mention that those cruteria are inaccurate. So change them already!!! Fortunately, my care has not been limited to the “guidelines” & I’ve been able to take advantage of best choices made by my doctors and I. All to the good. Keep fighting the fight-these science types will never listen to a lowly patient & change something..needs to be another doc.

  • I respond positively to the blog because while I respect guidelines I also appreciate nibbling at the edges of those guidelines in the pursuit of the next lowest hanging fruit. As a retired non-neurologist physician I see parallels that apply to any specialty as we continue to test boundaries of care. Besides, nibbling at the edges is just the funnest and most creative part of any job worth doing.

  • As an old Neuro Nurse and current Neuro Patient,
    I have met a Range of Robotniks.
    Avoid them if you can.

  • I have nothing to add but want simply to be notified by email of new (more often than not) very good comments being made here.

  • “In response to the first case with ‘inactive secondary progressive MS”……This patient needs hsct..now..

    Do you not think such a patient will not benefit from hsct..if it returns them to normal levels of brain atrophy..?.

    “Our aim was to investigate whether patients with MS with disability improvement develop less brain atrophy compared with those who progress in disability or remain stable.”
    “CONCLUSIONS: Patients with MS who improve in their clinical disability develop less brain atrophy across time compared with those who progress.”

    Disability Improvement Is Associated with Less Brain Atrophy Development in Multiple Sclerosishttp://www.ajnr.org/content/41/9/1577#:~:text=Brain%20atrophy%20measurement%20is%20one,since%20the%20earliest%20disease%20stages.

    • He might not benefit in terms of improving his disability, however reducing his brain atrophy should slow the disability progression. It may prevent him/her from gettinr really severe disability, that’s how I understand it.

      • “He might not benefit in terms of improving his disability,”

        It was a she and she had edss of 1.0 I believe…idea is that hsct stops progression…and people w/active lesions should see improvement of disability.

  • “Alone we can do so little;
    Together we can do so much.”
    -Helen Keller
    It is going to take a village so if the Robotniks all finally come together, much can be accomplished.

  • It’s incredible to watch this from Australia. Our neuros aren’t as handcuffed, and they have access to the full suite of treatments as well as off label prescribing. In short they get to use their professional judgement to treat as they see fit (NEDA). Speaking to my neuro this morning, apparently no one uses the old first line drugs any more because “why would you?”.

    So what makes your neuros different? Are they trained differently? Or is it a product of the system they’ve been forced to work under? Either way it appears to me that MSers are suffering needlessly, for no reason other than it’s what the system demands. Robotniks indeed.

    • This is why I have said that if I had MS I would want to live in Australia or Sweden. Australian MSologists are in a very privileged position and they know it.

      • And so are Australian MS patients, as long as they have the right MSologist. I am definitely glad I was living in Oz when I got diagnosed.

      • But what is producing this specimen of MSologist? We need to start change at grassroots level and for this we need to address the reason for the variety of approaches within MS care from neurologists. I’d love to know what influences the less aggressive doctors so heavily to continue the ultra conservative treatment of their MS patients? Please can someone reveal why?

        • I agree Australia is a fantastic place to be as an MS patient but we still have work to do on flipping the pyramid and offering HSCT/Alemtuzumab as a 1st line DMT where the patient is comfortable with the risks.

  • What the heck has Poles done to MS?
    Lublin is a city in Poland and ‘robotnik’ means physical worker 🙂

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