Friday, 23 September 2016

NeuroSpeak: calling all MSologists and trainees

Why haven't you registered for the MS Trust Conference with your team from 6-7 November? #MSTrust #NeuroSpeak #MSBlog

"In a pioneering spirit the MS Trust decided to launch a new initiative. They wanted to bring MS teams together at their annual MS Trust conference. The management of MS in the modern era is about multidisciplinary teams that work together to improve the outcome of people with MS. The MS Trust then approached the ABN to help design a programme that would be of interest to neurologists, neurology trainees and MSologists. The ABN MS Specialist Interest Group and the MS Trust then designed a masterclass session for neurologists. The uptake so far has been so abysmal that the MS Trust is now considering cancelling it. This saddens me; in the modern era any opportunity to bring together doctors and other HCPs should be welcomed. The days of them and us are surely over? More importantly, the meeting is also a good opportunity for team building. If you don't go yourself can you please make a plan to send one of your juniors?"

"Another trend, which is unstoppable, is the move away from face-to-face meetings toward webinars. The following is an international webinar series that I have agreed to participate in; PRIME. The good news is that it is for all HCPs, both physicians and clinical nurse specialists. The bad news is that it is not for people with MS. I dream about a day when people with the disease and their healthcare professionals will be able to attend the same teaching sessions online and/or in person."

"We tried to get MSers in wheelchairs to man our #ThinkHand stand at ECTRIMS and were told by the organisers that this was not allowed under ABPI guidelines. It is a great pity MSers are not allowed to attend ECTRIMS unless they register and keep it a secret. Do you think MSers would be shocked at the extravagance of the marketing fest?"



13 comments:

  1. Are you surprised? Most neurologists consider themselves superior to their nurses so why would the want to attend a meeting with them.

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  2. I suspect they were, I saw a number of people who may have had ms. There are health care professionals with ms.

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  3. The cost of the meeting is £320 for day registration plus travel with no support provided for our trainees or fellows to attend. I'm not sure it's a huge surprise that registrations are poor.

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  4. There is a very good reason why the ABPI don't allow Pharma and patients to mix. It wouldn't be right to advertise POM's direct to a patient. You should know better team Barts

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    1. Are you saying Ectrims is a trade show?

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    2. I remember thinking the Genzyme branded bag covering my Lemtrada infusion was a bit distasteful. Why is this type of direct advertising acceptable yet patients attending Ectrims is not?

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    3. I think Lemtrada is light sensitive, is that correct? Yes a bag needs to go over it but it doesn't need to be branded. I guess buying unbranded bags would cost extra money.

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    4. Interesting that at the big rheumatology conference there is a patient village and a parallel patient-led symposium. The RA community, as usual, is light years ahead of the MS community.

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    5. I think if patients were openly allowed to attend conferences it would change the way Pharma marketed their products. I suspect it would result in less extravagance and more science.

      When the last ECTRIMS was held in Boston some Pharma companies had two stands; one for all-comers and one stand that excluded the US clinicians. Why? Different regulations. I can't see why the ECTRIMS organisers can't use the same system for ECTRIMS and exclude patients from certain areas to protect the ABPI rules.

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    6. If the extravagance didn't work Pharma wouldn't use it....

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    7. Re: "If the extravagance didn't work Pharma wouldn't use it...."

      I am not sure about this. There are many better, and more creative, ways of advertising/marketing that would get Pharma's messages across in a more environmentally-friendly and socially responsible way. They are too scared to try.

      I think they are all blinkered by the red queen effect; you have to run faster just to stay on the same spot. They simply try and out compete each other and are too scared to be the first to step off the treadmill. However, when one of these companies realises the folly of their ways they will make a big difference to world and more importantly to people with MS.

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    8. It's a nice idea but who is going to convince them to put social responsibility and the environment on the agenda? If they wanted that they would have done so already. I doubt there is much they fear.
      It's a shame, they could do so much good if they had a mind to.

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    9. Re "...who is going to convince them to put social responsibility and the environment on the agenda?"

      We can; the MS community. Not everyone who works in pharma is all bad. There are some very caring, responsible people who work for Pharma. They just like you and me with aspirations, families and life outside of work. They also get ill, including life-threatening diseases. Our #OffLabel campaign to get DMTs to people living in resource poor settings has shown me a very humane side of Pharma. So I think there are enough like-minded people who work there to make a difference.

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