Saturday, 11 June 2016

ClinicSpeak: BN/AN

Before natalizumab and after natalizumab; general neurologists in the UK need to see the transformation. #MSBlog #ClinicSpeak 

"I am at a MS meeting in London and there has been some discussion about general neurologists holding patients with MS in their general practice for some years before referring, them onto the MS Service, for a DMT assessment. These referrals are happening too late, often after the person with the disease has lost brain and/or spinal cord and has irreversible disability. Why is this occurring? I think this is UK-specific problem and is the legacy of NICE and the Department of Health's risk-sharing scheme. When the interferons and glatiramer acetate were turned down by NICE, as not being cost-effective, the neurology community interpreted this as these treatments being ineffective. This is not the case; NICE said they were effective, but not cost-effective. Once the risk-sharing scheme was launched pwMS could only access DMTs via specialist units and hence the average neurologist has not seen the transformation natalizumab has made to the management of MS. I now refer to the management of MS as being in the 'before natalizumab' (BN) and 'after natalizumab' (AN) era."

"Natalizumab is the DMT that transformed the field of MS. On natalizumab not only have we seen the majority of patients becoming free of disease activity (NEDA), but a significant number have seen improvements in their disability. Because pwMS on natalizumab are not being followed in general neurology clinics general neurologists have not seen this transformation in care and outcomes. If only they could see what a difference early effective treatment has made to pwMS things would be very different."

"Who is at fault then for general neurologists not referring pwMS to MS services sooner? I think we the wider MS community are at fault. We need to engaged and educate our colleagues and make it clear to them that the sooner they refer their patients for an assessment the better the outcome. They need to know that natalizumab is only the beginning of the transformation; some of us are even beginning to have the discussion of potential 'MS cures'. We have come so far, but clearly have many miles to go before we sleep."


Stopping by Woods on a Snowy Evening

BY ROBERT FROST

Whose woods these are I think I know.   
His house is in the village though;   
He will not see me stopping here   
To watch his woods fill up with snow.   

My little horse must think it queer   
To stop without a farmhouse near   
Between the woods and frozen lake   
The darkest evening of the year.   

He gives his harness bells a shake   
To ask if there is some mistake.   
The only other sound’s the sweep   
Of easy wind and downy flake.   

The woods are lovely, dark and deep,   
But I have promises to keep,   
And miles to go before I sleep,   
And miles to go before I sleep.

CoI: multiple

8 comments:

  1. Prof G - so if you were to recommend a potent drug to an MS with aggressive disease would you choose natalizumab or Lemtrada?

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  2. General neurologists not recommending highly effective DMTs is a concern here in the US also. I was diagnosed by a general neurologist and he recommended one of the CRAB drugs. My mind was set upon going to an MS center. The doctor there diagnosed me with very aggressive RRMS and wanted me to take Tysabri asap.

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  3. it may be worse in usa ,I cant remember how many times I waned to ask how many ms people do you see, for things they say is not part of ms. there's to many set in there ways, and for the money flow

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  4. How are you going to reach and educate the general neurologist population? Presumably the majority will not attend the super specialized MS only conferences where the MS specialists reside and vice versa. Maybe you could invite general neurologists the chance to attend your clinics as observers?

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  5. Third time the Blogspot has made me cry. Prof G, I am very glad for all the people with MS (but sad for you) that you now understand that you have many miles to go before you sleep. When are you going to start crowdfunding some help with this brilliant website?

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  6. The fault lies with the teaching in residency programs, specifically by MS neurologists. A rotation in MS is mandatory in every neurology program for junior doctors/residents. They should be told that CRAB drugs should be obsolete. They should not even be offered to patients as they have zero effect of disease progression and minimal effect on relapses. They should be aware that "time is brain" and should always offer the most potent inflammatory medication possible.

    Time will tell, Dr. G, if you are correct in your assumption that the more potent MS drugs, like Tysabri, Alemtuzumab, etc. will stop progression of RRMS into SPMS, as most MS patients currently will do that that were not treated or treated with these inferior medications.

    For many MS patients, it is too late for this as this "ship has sailed" as these potent inflammatory drugs were not available until the last few years. MS Neurology, at this time, has nothing further to offer them because of the unacceptable imbalance in treatment model of MS (inflammatory drugs-15, neurodegeneration-0, demyelination-0, neurorestoration-0). Hopefully, this changes but I will not hold my breath.

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    Replies
    1. The problem for MS patients can be that if there is a general neurologist, or other specialism neurologist who is the 'director of neurology' at hospitals. They may be the main supervisor for the junior doctors in neurology. A junior doctor seeing an MS patient doesn't mean the junior doctor is supervised by a MS consultant neurologist.
      If this consultant neurologist is not up to speed with MS treatment and care then this is not helping the junior doctor or the MS patient.

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  7. By targeting the new generation of neuros only, then the change will take at least one to two generations. There are people being diagnosed now who will be mighty peeved if they find out in 10 years they could have been doing better if their doctor was a bit more current. I think doctors in general need to become better communicators and the MS societies (often led by neuros) have to take a role in this. The law changes ALL the time. Every time there is an aspect of law that changes, or gets updated through a new decision, the law society and various other professional groups send an email to practitioners discussing the changes. Sometimes it's not clear that what the actual change is or how the law will develop - but it's imperative that all practitioners are aware of the change and quickly - Courts don't wait for generational changes lol.

    So if ideas are being raised in MS but are not reaching all the practitioners - in my view the MS societies, who have neuros on boards of directors, have a responsibility to tackle the issue. Maybe they could prepare a pamphlet to send to all places where neuros reside spelling out the new ways of thinking and their benefits - kind of like cigarette package.

    Though, the cynic in me, thinks they won't be able to tackle any change without commmissioning some research first. And by the time they finish the research and tackle the communication issue, we may as well have waited for a couple generations and targeted the new generation through schooling - timing will be about the same lol.

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