Thursday, 2 June 2016

NeuroSpeak: calling all UK neurologists

If you are a UK-based neurologist please have your say on how you want MS services to be configured #NeuroSpeak #MSBlog

"My attendance at the ABN two weeks ago coincided with the temporary closure of the blog. At the meeting many of my colleagues asked what had happened to the blog. A surprisingly large number even admitted to reading it. I am not sure why, as this blog is mainly a resource for MSers and their families. However, if you are reading this post, which I have done on behalf of the MS Trust who asked me to use the blog to nudge you to respond to their survey. They are running a survey to find out how to configure MS Services in the UK. Less than 1 in 5 neurologists has completed the survey. As a teaser:
  • 46% so far agree that 'Everyone diagnosed with MS should have this confirmed by an MS specialist neurologist’
  • 81% so far agree that 'DMDs should only be prescribed by an MS specialist neurologist’
If you agree, or don't agree, please click on the link and complete the survey. It would be nice to get a quorum. I for one disagree with both these statements. I can't see why MS needs to be diagnosed by an MSologist; as time matters and MSologsists are in short supply why delay making a diagnosis? What is necessary, however, is to make sure the person who is being diagnosed receives the appropriate counselling and support. The diagnostic phase of the MS journey is one that haunts many MSers. In regard to DMDs only being prescribed by MSologists is bollocks. Why can't a well trained MS clinical nurse specialist make the call? They are usually closer to their patients than we are and can just as easily explain the pros and cons of DMDs and help their patients make the right decision. The days of neurologists, and doctors, being gate-keepers to prescription drugs is over. Do you agree or disagree? Don't tell me please complete the survey."

27 comments:

  1. Replies
    1. For me, definitely no, I think Gavin would agree. Though deficiency may well be be an important factor in the development of MS.

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    2. A Brazilian neurologist Coimbra treats his MS patients (at least 4000) with vitamin D3 1000 IU/kg/day and a calcium free diet. His MS patients are extremely grateful, start walking again, go back to work and forget that they have MS. They communicate through Facebook.

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    3. Perhaps a pinch of salt might be needed too? I caution anyone from getting their information from Facebook, there are a number promulgating the proven to be bogus CCSVI hypothesis for example.
      I also notice doing a quick PubMed search that Dr Coimbra has not published any findings concerning vitamin D treating or "curing" MS in any journal, reputable or not, so again I advocate extreme caution when presented with these claims.

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    4. If it sounds too good to be true it probably is. There are thousands of people taking high dose vitamin but 1000u per kg is massively more than that even recommended by ProfG.

      You need calcium for bone health.

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    5. RE: "do you consider Vitamin D3 a DMD?"

      No, we did a meta-analysis on the studies and there was no hint that taking vitamin D affected the course of the disease. Arguably the studies to date have been small and are hence underpowered. The low vD levels and MS disease activity can all be reverse causation; the so called consumptive vitaminopathy. Low vD levels are associated inflammation; inflammatory reactions consume vD which lowers the levels not the other way round.

      There are trials running at the moment to see if vD supplementation affects disease outcomes; I would need these trials to be positive to be convinced.

      We promote vD supplementation for bone health. Finally the evidence that vD may be linked to MS causation is much more convincing; in fact it is very compelling. We need to act on the latter; what we really need is vD MS prevention studies.

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    6. We do not need salt.
      Prof Holick the endocrinologist has visites Coimbra at least twice.
      I do understand your point of view, but I also reed al the testimonials of patients with MS WHO claim they have their Life back.
      Coimbra also treats patients with other autoimmune diseases.
      Just Google Coimbra.and you Will find a lot of information. There is a publication in PubMed as well.

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    7. Yes, you will get a lot of information if you Google but how much can be trusted?
      Has he published on vitamin D and MS as opposed to psoriasis? If so I'd appreciate the link.
      Thanks!

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    8. For that matter you can’t trust all the Meta-analysis either (Horton R, Lancet, Vol 385 April 11, 2015)

      No Coimbra has not (jet) published on vitamin D and MS. His patients have…

      1 - Coimbra thinks it is unethical not to treat the controls.
      2 - Coimbra establishes an individual dose of vitamin D3 in a few steps guided by the PTH level.
      3 - Vitamin D3 is not a “Drug”, it is sunlight and nutrition and essential to life. You can’t go without vitamin D3, we all know that.

      His treatment seems to be successful, a world famous curious endocrinologist Michael Holick has visited Coimbra at least twice.

      How long will it take before a curious, caring, knowledgeable Neurologist visits Coimbra?

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    9. I dunno, I may be overly cynical but I keep getting a whiff of week old mackerel. If it's that good, surely it should have been published in some form?

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    10. An open mind would help and some curiosity.

      GrassrootsHealth is a Consortium of Scientists, Institutions and Individuals Committed to Solving the Worldwide Vitamin D Deficiency Epidemic.

      Its Newsletter of March 2, 2016
      MS Treatment Protocol May Put Patients in Remission
      Vitamin D is great for prevention of disease, but what about treatment after you've been diagnosed? Since March is National Multiple Sclerosis month, now is the perfect time to bring it out into the light. The protocol we'll be highlighting in this newsletter was developed by Dr. Cicero Coimbra of Brazil.

      Here the link to the newsletter of March 2, 2016.
      http://archive.constantcontact.com/fs187/1102722411090/archive/1123955965818.html

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  2. Prof G I am not a neuro but I am an MSer. The survey questions are a bit ambiguous in how they can be interpreted.

    Re: prescribing DMD's...you say why can't a well trained MS clinical nurse specialist make the call?
    My MS nurse is experienced but I would not feel confident in her prescribing me DMD's. To be honest I have seen some gaps in her MS knowledge. I have had MS for some years now so I am not naïve about MS anymore. If I was recently diagnosed with MS I would really want to see a consultant MS neuro to discuss DMD's.

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  3. 1) "I can't see why MS needs to be diagnosed by an MSologist; as time matters and MSologists are in short supply why delay making a diagnosis. What is necessary, however, is to make sure the person who is being diagnosed receives the appropriate counselling and support."

    2) "In regard to DMDs only being prescribed by MSologists is bollocks."

    I disagree with both statements as they currently stand, i.e. in their brevity and without a degree of reflection.

    Re 1: Even in high incidence areas of the World the diagnosis of MS is not always straightforward (not to speak of say Asia), and input from a neurologist with special expertise & experience in MS AND ITS DIFFERENTIAL DIAGNOSES can significantly help speed up the process. That the MS Trust’s initiative is mainly recognizing the vital role of MS Nurse Specialists in the care for pwMS should not detract from the fact there is a shortage of neurologists with sufficient training to be confident enough about the diagnosis MS to start DMT as early as possible. What is needed is therefore not only more support for MS CNSs, but also for neurologists who after all have to make the call “this is MS”.

    Re 2: I find the term used inappropriate. In my experience it is key to keep the communication between neurologists and MS CNSs in constant flow to update each other on drugs, effects, safety issues and resulting decision making. I disagree with MS CNSs making these decisions autonomously, just as we neurologists – in many cases – don’t do that either, but rather after discussion with colleagues, CNSs, and/or in MDT meetings including neuroradiologists (and, of course, with pwMS and their families/partners/friends).

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  4. Given my family history I would like to see some kind of public health effort to increase awareness of vitamin D supplementation. I am surprised that the Scottish or NI health ministers have not taken a line on this.

    I also wonder if the public health advice that has lead to parents slathering their kids in suncream is really the right answer.

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  5. Part 1

    I am a partner of a person with MS. I live in Australia.

    I am biased because I have had a few unfavourable experiences with nurses (MS specialist and otherwise). Still, in an environment such as MS, where neurologists themselves have different opinions about MS and its treatments, where sometimes they struggle to explain these opinions to their patients in a logical ways, where there are a lot of uknowns and debate even amongst the experts, and where people with MS have sometimes expressed feelings that their doctor displays a patriarchal attitude, I don’t see how introducing a third level of prescribers (on top of ms neurologists and general neurologists) is going to help. (As a side issue, I would be really interested in hearing specific treatment debates from different neuros for complex theoretical MS treatment case scenarios – I think this was sometimes done in the past, but treatment options have been evolving lol).

    In my experience, nurses may have the patient’s ear more than the doctor in day to day things, but nurses’ technical knowledge is often second hand: neuros go to conferences and read, have staff meetings and dissiminate information that way. A neuro I liked would say things about the treatments I asked. I would ask about opposing opinions that have been put to me by other neuros, and he would agree, disagree or explain the opposing opinions. More than often than not, he would dig from the piles of paperwork in his office to dig a relevant journal article on the topic to take home with me (this suited me, it wouldn’t suit everyone). My partner’s main neuro does the same: my partner’s other specialists will give differing opinions and my partner’s neuro will explain the background behind each opinion and way of thought and give her own. Sometimes we go with my partner’s main neuro’s opinion and sometimes with another specialists’ opinion. Based on my experience, I do not believe I would receive the same level of in-depth information from an MS nurse, though there are other valuable things that MS nurses do.

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  6. Part 2

    The idea is not really articulated to the end: is it intended that MS would act as opinion givers and the neuro would do the final signing? Who would responsibility lie with if something goes wrong?

    In Australia, there are usually a number of neuros working in a public or private practice, and one MS nurse. If a patient and a neuro do not get along for whatever reason, as is natural in any setting, then the patient can see a different neuro without changing their medical centre – whether in a public or a private setting. If a patient and an MS nurse do not get along, options are more limited – the patient either changes hospital or relies on the neuro to bridge the gap (or puts up with an unsatisfactory situation).

    I have often felt like some (or many) MS patients would benefit from having MS advocates (in whatever form they took). I do not see MS nurses as filling this role because in my experience, they are tied to their employer’s practices, with second hand information regarding the merits of that practice. For example, a few weeks ago I read about a newly diagnosed person with MS who was offered no meds by the treating neuro in the first year of diagnosis. Subsequent MRI showed that 5 new lesions had developed during the 12 month period and the patient was now being told to start taking Copaxone. Her neuro had assured her that he had seen worse lesion counts 12 months after diagnosis. It’s irrelevant whether in this case the neuro was risk aversive on behalf of his patient or whether the neruo was begging the patient to take a efficacy DMD and patient was refusing. How would this patient benefit from the involvement of an MS nurse employed at the same centre as the patient? Would the MS nurse just act as a mouth piece for the doctor’s practices? If a patient sees 2 medical professionals telling the patient the same thing, would their appetite for seeking a second opinion change then if they had just seen one person?

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  7. Part 3

    My experience with a diagnosis of MS by a non specialist MS neurologist is as follows :
    - the diagnosis was made quickly and without much difficulty (with over 12 lesions having accumulated by that stage, that’s perhaps not surprising). Private MRI facility with no out of pocket fees made the wait for the appointment short, as did the subsequent decision to see any neurologist able to see my partner quickly, rather than worried about quality.

    - The initial neuro diagnosed PPMS and offered no meds.

    - A change to specialist neuro 4 months later led to opposing advice and access to Tysabri/Lemtrada and the advice that while the phenotype won’t be known for another 12 months, it was unlikely to be PPMS, but could be RPMS, SPMS or even RRMS.

    - We have a long history of medical experience and we changed neuros because we learnt in the past that if something doesn’t feel right or makes no sense, see someone else. If we didn’t have a 10 year long history of medical contact before that in a variety of setting, I doubt we would have had the ability to process cues quickly enough to recognise the benefit of seeking other opinions. There was nothing tangible that was wrong with what the first neuro was saying that we could have articulated at the time, it was more the amount of things that he was avoiding saying and the silence to some of our questions.

    I feel that our experience of MS diagnosis process would have been assisted more by a medical road map of who is who in MS world (who are neurologists, how are they different, what do MS nurses do, how to access different aspects of care etc), where to go for help, where to go if you feel like medical professional is not listening to you etc.

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  8. I asked my MS nurse if I could go on Alemtuzumab as my first DMD and she advised me it is a secondline treatment when patients fail other DMD's. This is incorrect and I had severe MS relapses including motor symptoms. I am sure I met the criteria for alemtuzumab but it was not on offer when I asked this nurse. This was after the drug was given the green light.
    I was advised initially by my neuro to discuss DMD's with my MS nurse and make my decision. I wish instead I asked my neurologist for an extra appointment to discuss DMD's or a letter in writing which explained which DMD's could be offered to me. I feel very let down in that respect.

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    Replies
    1. I am sorry that you feel let down by the system. The UK access is defined by "active disease" and so alemtuzumab can indeed be first line.

      It would be very interesting to see a list of UK neurologists, relative to their precription of alemtuzumab and then I suspect one would see some that never prescribe, some that never prescribe first line and so we could see the risk averse, softly softly verse the gung-ho hit em hard guys.Then ask about long term outcomes

      Needless to say I think we are "Top Gun" some may say "Rambo":-)

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    2. Ha. I'm in the process for doing this in respect of Melbourne public hospital neurologists through the freedom of information process. I'm unsure ultimately if I will get the number of particular drug prescriptions by a named neuro or whether they will argue to redact this information for anonymity purposes, but I'm eager to see how it pans out. I haven't delved into it too much until receiving the actual responses, but I haven't been able to think of too many privacy or public interest reasons to prevent the disclosure of information which would show the numbers of each drug's prescription by the prescriber's name.

      Unfortunately, I expect that the process from start to finish will cost from $500 to $1000 dollars without any hiccups even if I don't get drowned in pages and pages of documents showing not much at all.

      Still, be fascinating if the info becomes available.

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  9. I received my diagnosis from the postman, and the letter wasn't even addressed to me, it was a copy of the letter the neuro sent to my GP after receiving mri results! I was home alone and didn't know what to do with myself. I phoned neurology and was told, 'Well you already knew it might be that'. Anything would have been better than that.
    The following consultation was upsetting due to the fact that the neuro was dismissive about many symptoms which were numerous following a big relpase. Both that relpase and the previous one had been misdiagnosed as strokes. I am guessing a damage limitation exercise on behalf of the stroke department!
    Things haven't improved though, new symptoms are not acknowledged, or are dismissed, in other words shut up and take the dmd.
    The only time I have felt supported is when speaking to the ms nurses, I would be happy to see only them, and hoping this will be the case now I have decided to stop the dmd.
    I write this because when I read, 'What is necessary, however, is to make sure the person who is being diagnosed receives the appropriate counselling and support', I cried, just because it was said by a neurologist. Sorry to moan, but I have no personal experience of a compassionate neuro and reading this post brings that home.

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  10. I wanted to post on the comments right at the beginning of this about a surprising number of neurologists admitting to reading the Blogspot. If only more of them did! I have heard of two different MS neurologists suggesting a prolonged washout period after Tysabri. One of them was my own neurologist - generally considered near the top of the field. When he suggested that I might just try going DMT-free for a while, after four years on Tysabri, I was able to explain to him that a prolonged washout would put me in danger of bad rebound relapses. I knew this from reading the Blogspot - he didn't.
    Cordelia Brightburn is my pen name.

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    Replies
    1. Glad the blog has been of use Cordelia.

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    2. Although rather disturbing your neurologist was unaware of Tysabri rebound.

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    3. Cordelia, we had too many similar experiences.

      We had worked hard, had a few discussions with the affected neuros and are now happy with her team of docs. She has a great main neuro and an awesome back up neuro. I don’t think the two neuros like each other all that much, but after some initial name calling (of each other!), both now take excellent care in providing care and information to her. We’ve opted for having 2 neuros (who often have opposing advice) because we like to hear each train of thought and make up our own minds. But something very minor that happened last year illustrated knowledge gaps that naturally happen in environments where there is little known, lots of theories and lots of research with conflicting results on the same topic.

      My partner wanted to obtain as first line therapy something that would have a longer term outlook than Tysabri did for her: she was JCV negative but didn’t want to face the prospect of changing should she become positive etc. Her main neuro told her the conversion rate is estimated at 2 to 3% annually, her back up neuro said some new study showed it was closer to 10%. I could not find this study and I tried so hard, my partner asked the back up neuro and he said he doesn’t have the study but all the neuro conferences have had posters about it: how could the other neuros have missed them? Lol. Eventually I tired of the issue and let it go and my partner chose and had her induction type treatment. About or so ago, the study was released: I think it was some European centre that found the conversion rate to be closer to 10%. It’s a minor issue in the grand scheme of things, but it was important to my partner at the time because of her particular medical experiences.

      My partner’s main neuro is a decent doctor, we’re both very happy with her. I’m not mad that she missed some new piece of information in one of 20 posters at neuro conferences for a period over 10 months: I dare say by now she’s aware of the study. I would have been annoyed had my partner made decisions that she needed to make at the time on the basis of a fairly lower and possibly incorrect estimation, when newer information was available.

      Having said that, we did notice that no neuro we saw in 2015 raised rebound effect on cessation of Tysabri when they were recommending Tysabri to her. The issue was only discussed when we raised it.

      My partner also faced an uphill battle when she wanted to transition off Tysabri to induction treatment by bridging with Gilenya (at the advice of back up neuro). Main neuro was wanting steroids, though to be fair, there were timing issues with both proposals and could have been the main reason for the steroid v. gilenya recommendation (ie. the reommendation may have been different if my partner had 6 months instead of 3 for the Tysabri washout).

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  11. I admire the passion and dedication of your team and your strong commitment to providing as good care as possible within the constraints of the NHS. However not all services are like yours. If there are such wide variations in the management and monitoring of MS between neurologists specialising in MS, how can generalist neurologists keep up to date? At the same time keeping up to date with epilepsy, Parkinson's disease, MND etc. Surely they are not going to be comfortable precribing alemtuzamab and daclizumab/ocrelizumab etc when they become available. Do they truly have the depth of experience and expertise that your team and similar ones do?

    I am supportive of MS nurses and mine has been very helpful and accessible but completely run off her feet. Getting high quality nurses is not always possible. Many hospitals are downgrading their clinical nurse specialists to band 6 and as a health worker and a patient I have met some pretty dodgy CNSs, mainly because they don't know what they don't know and make some scarey decisions. London may not have the scarcity of high quality nurses as we do provincially but I do not think that MS nurses should be making decisions about DMTs. I think they have a huge role in monitoring, arranging follow on prescriptions and support but not de novo prescribing.

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  12. Any sensible ms nurse or neurologist would be well advised to read this blog as it would give them a heads up as to what the well informed patient will be asking them. Only last year an MS nurse consult went as follows "I have had a lot of patents asking about Lemtrada" me "do your read the Bart's MS blog?" MS nurse "no I've not hear of it". I wouldn't mind a nurse prescribing if they knew their MS from their elbow

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