The specialist vs. non-specialist debate is alive and kicking in the field of MS. #MSBlog #NeuroSpeak #ClinicSpeak
There is a big debate going in neurological circles whether or not MSology should become a separate sub-speciality with a formal accreditation process. Sub-specialisation with accreditation is happening across most disciplines in medicine. Why is this important? At the most recent European Charcot Meeting I attended there was a big debate around quality standards and who should be responsible of looking after pwMS. A large number of European neurologists favour the sub-specialist route, i.e. a formal European diploma, or accreditation system, to become an MSologist. I don’t agree. I think general neurologists can get up to speed with looking after pwMS if they work as part of a multidisciplinary team and keep themselves skilled. The days of a lone neurologist managing MS without a specialist nurse, pharmacist, etc. are long gone. The skills you need to have to manage MS are not rocket-science and sit comfortably with being a general neurologist.
It took me 16+ years to train to become a neurologist; I entered medical school in January 1982 and got my first ‘substantive post’ as a honorary consultant neurologist in November 1998. To add another year, or two, onto that to become a super-specialist just seems too long.
Do you agree with me that MSologists can be general neurologists with an interest in MS? Or do you think MSologists should be sub-specialists who spend most of their time looking after patients with MS?
CoI: multiple and the Neurology Academy is supported by an unrestricted grant from Biogen
There is a big debate going in neurological circles whether or not MSology should become a separate sub-speciality with a formal accreditation process. Sub-specialisation with accreditation is happening across most disciplines in medicine. Why is this important? At the most recent European Charcot Meeting I attended there was a big debate around quality standards and who should be responsible of looking after pwMS. A large number of European neurologists favour the sub-specialist route, i.e. a formal European diploma, or accreditation system, to become an MSologist. I don’t agree. I think general neurologists can get up to speed with looking after pwMS if they work as part of a multidisciplinary team and keep themselves skilled. The days of a lone neurologist managing MS without a specialist nurse, pharmacist, etc. are long gone. The skills you need to have to manage MS are not rocket-science and sit comfortably with being a general neurologist.
It took me 16+ years to train to become a neurologist; I entered medical school in January 1982 and got my first ‘substantive post’ as a honorary consultant neurologist in November 1998. To add another year, or two, onto that to become a super-specialist just seems too long.
Do you agree with me that MSologists can be general neurologists with an interest in MS? Or do you think MSologists should be sub-specialists who spend most of their time looking after patients with MS?
An approach we are taking in the UK is to help skill-up trainees and non-specialists to manage MS. I have recently starting chairing the Multiple Sclerosis Academy with this specific aim. If you are interested in joining the Academy and attending the MasterClasses please register your interest via this LINK. Feedback from our first MasterClass was excellent.
CoI: multiple and the Neurology Academy is supported by an unrestricted grant from Biogen
I agree with your sentiment in principle, Gavin. The problem (at least here in the USA) is that the medical system overloads general practitioners of all colors. thus, while it's easy to say that a general neuro should be able to keep up to date with the developments in the MS world too few of them have the time to dedicate to such an effort.by having a separate MS specialist route and only allowing MS specialists to treat MS patients then we can guarantee that the practitioners are up-to-speed. I can't tell you how many times I've seen stories of MS patients in the USA going to their local neuro only to fall into the "watch and wait" or "interferon for everyone" trap simply because their neuro isn't conversant in the state o the art.
In the UK we have specialised prescribing centres that act as specialist centres. It clearly varies from country to country.
In the U.S. we have far too many neurologists who don't keep up with the latest research and developments. That's when the patient suffers. Having an MS team is ideal, but they are not always available to patients, sometimes forcing patients to seek neurologists who are not MS specialists. A neurologist who has up-to-date knowledge and treats the patient with compassion and respect is crucial. I agree with what you are saying, in theory. MSology is not necessary. In my Utopia each patient would benefit from the team approach where the WHOLE patient is considered.
My thoughts exactly. I am in the UK and have had worsening (or PP) MS for many years, undiagnosed until recently.Slightly off topic, I would add that there is, among GPs in the UK, far too much ignorance of the warning signs of MS. More rigorous enforcement of the professional standards of GPs should be a priority.
I think all neurology trainees should be encouraged to attend these courses.
Our experience (in the USA) was that neither General Practitioners nor general Neurologists had any familiarity with MS past what they learned way back in Medical School. We got horrid advice, ignorant in many ways. Once we went to a specialty MS Center, it was as if someone finally turned on the lights, and things were done competently and quickly (or as quickly as fighting against insurance companies could happen).It seems that if not forced to, general MDs or even some specialists, don't do enough to actually progress their knowledge.
I am based in Australia and have had diagnosed MS since 1993. As I reflect on it I am yet to meet an MS specialist. I have met a lot of puffed up neurologists whose firm ideas have been challenged by time so accreditation will still be the blind leading the blind in most cases. If you are really interested then you need to be across a range of disciplines but that runs counter to specialisation. Based on what I have seen, I would run like mad from a specialist. Formulaic approaches won't do the trick.
I would prefer someone with specialisation in MS. Without wishing to sound generally disrespectful towards those learned in a very demanding profession, one or two of the neurologists I have seen over the years did not convince me of (a) bang up to date knowledge of MS research and (b) even being particularly interested in MS.
Stroke consultants go through an additional two years of specialist training, so the Royal Colleges / NHS sees value in this being a sub-specialism within neurology.I had a look at the neurology postgraduate curriculum and MS is a large part of one module with a further two being relevant to MS – this is out of a total of 52 modules.Is that enough training for a complex disease like MS where there are still so many unknowns in : the cause, disease mechanisms and sub-types, treatments, pipeline treatments etc ?Perhaps it shouldn't be compulsory to have MS specialist training as a pre-requisite for a consultant position but conversely MS specialist training could fast-track candidates to a MSologist.My own diagnosis came after I had seen four neurologists and finally got to see a MSologist. I was lucky that my GP was engaged in getting a diagnosis to a growing list of neurological symptoms in a short space of time – and that I wasn't prepared to accept being brushed off.
MSology should certainly be a sub-specialty of neurology. No general neuro is up to date on all things MS. Even the ones "with interest in MS" are not keeping up with the pace of change. On the other hand, however, working with just one patient group may be difficult/tedious for the neurologist.Some research/some MS clinic for the golden balance?
I am a 33 year old male from America and I strongly believe MS'ers should see neurologists who specialize in MS from the start. My first relapse was in 2011 in California and 3 out of 4 neurologists diagnosed me with MS. I was numb from the waist down and couldn't walk either with bowel and bladder problems. I didn't have any OCB's so this might have created more confusion than necessary. The final neurologist I saw in Colorado (I had to move in with my parents since I was unable to walk.) thought it was a rare virus so I didn't start on any DMT's. I had multiple lesions on my spine and a few lesions in my brain too. How I got misdiagnosed is beyond me and I paid a steep price 4 years later for their incompetence.I relapsed again in 2015 and my EDSS is now a 3. Even after my second relapse, I got 2 neurologists' opinions in Minnesota and the first wanted me to go on Tysabri. The problem was I am JC Virus and didn't like the risk of Tysabri. So a few months later in June of 2015 I went to the Mayo Clinic. They recommended Rebif which I found way too conservative because it has low efficacy and only reduces disability by 30%. It was in the fall that year (after I got done farming) that I moved out to Colorado to live with my parents. I setup an appointment in Colorado, but they were booked about 5 months out. The neurologist I did see there didn't think I had MS so I was back to square one again. I then got an appointment at Rocky Mountain MS Center and it has been stellar ever since. I am now on Rituxan so I am hoping that it permanently halts MS. To summarize, I have seen 9 neurologists and only 6 of them thought I had MS. I delayed treatment for over 5 years due to be misdiagnosed, risk of Tysabri, and waiting on insurance and appointments. In those 5 years, a lot of brain damage occurred and now I am moderately disabled and generally struggling. Fatigue is the major issue that I can't seem to overcome. To add salt to the wound, I am no longer able to work full time and my income has dropped by over 50% while having to move into my parents basement 🙁 I say all MS'ers should be seen by neurologists who specialize in MS. If I would have been seen by an MS specialist right away, I might be able to have a full time job while not being bogged down by fatigue the entire day. Your blog is how I learned about MS while realizing how crappy my neurologists are. I would say (with some confidence) I now know more about MS than some neurologists, which should terrify almost anyone.
The general opinion of most people on the uk ms forums is that a neurologist with specialism in ms is extremely important. And I guess they should know from their varied and shared experiences.
I would always encourage a pwMS to see a consultant neurologist with an interest in MS or an MSologist. I would not feel confident seeing a general neurologist with an interest in another disease. I would be concerned to know if their knowledge of MS and DMT's is up to date and sufficient.
Are occupational therapists able to attend the MS Academy?