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?
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.