Is this the consultation?

Many people don’t read comments. 

This weekend

ProfG wrote that he was told that “Consultants/specialists/MSologists are never wrong. Passivity is the name of the game and that in general people with a disease still hold their view that their neurologist knows it all and that they would never dare to question their authority”

He said “How do we tackle passivity and activate pwMS to ask the right questions?

If someone hides from investigating their MS, which many people do, they will surely hope that Doc knows best.

How do we reach and engage them, this blog is never going to be be read by someone who doesn’t want to know anything, Is it?

You asked 

“How do we train neuros so that patients’ trust is not misplaced?”

Maybe we could teach them to read:-).

If a neuro actively reads they will learn.  

I wonder how many papers are read each week by our Neuros at Barts? I suspect the non-academics read fewer than the academic neuros? …Survey Time?

What do they read?

Alison asked the question to a group of young London neurologists How many papers a week were read?

They were either shy, couldn’t be bothered or the response was shocking. 

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    • Some do, many dont, many dont admit it, but if they are getting a toungue lashing maybe they are glad they don't read it.

      I have been spitting blood for the past week about one of my so called (they are now dead to me!!!) colleagues.

  • Posting more YouTube videos is a great way to learn about ms. Do you have a good simple ms in a nutshell video? (I watched everything I could find already)

    My wife and I follow OMS. I read your blog everyday and I read OMS everyday. While very little new information is on the oms site it's at least simple and laid in a way to be super accessible.

    I don't have ms but I love reading this blog. My wife doesn't want to think about ms everyday so I am not sure this is the forum to reach her. However she is willing to make changes she believes will help and oms offered that framework.

    Anyway trying to respond to several of your questions in one post 🙂

  • I think Prof G is absolutely right when he says we need to have PwMS asking the right question. Ignorance is positively harmful when it comes to not knowing about what DMT are available. Several years ago I had the privilege of being chair of an MSS branch and I was appalled by the lack of knowledge of the members. I assumed that they do not wish to know but I was proven wrong. There were not many options then but now the options are life changing. How can we empower PwMS?

  • I work for an organisation which helps people deal with problems they are unable to resolve alone. They are sometimes given a written list of actions to take before their next appointment, often they will not carry them out, even if the consequences are serious.
    There are many people who are not, for a variety of reason, proactive. Even when told exactly what to do, they can't seem to get themselves together and do it. People like this don't have the capability to research a complicated disease and study drugs. This is what doctors are for. If we can't rely on them to do the right thing by us, why are we spending fortunes putting them through training and employing them?
    It is also worth remembering that some pwms, who would normally be quite capable, are not because of the disease, particularly cognitive issues.
    Don't assume that everyone is capable of reading research papers and educate themselves.

    • I wrote my comment as a reply to KT but it has appeared on it's own.
      'How do you reach such people'
      Neuros don't need to 'reach such people', they are passed onto them by a GP.
      If the charity I work for gave clients incorrect or outdated information the outcome for the client could be disastrous, funding would be withdrawn pretty quickly and rightly so.
      When doctors are treating any condition which is not properly understood and they know that people are working on that and producing papers with new findings they surely owe it to their patients to show an interest and keep up. If they don't, and a patient is able to ask viable questions they need to have the balls to have a proper conversation about it and maybe go and read a few papers and get back to the patient, not shush them out the door and pretend it didn't happen. I guess it depends on the integrity of the doctor as to whether they are capable of that.
      It is unfair and unrealistic to suggest that patients should have the ability to challenge their neuro in order to receive the most up to date and appropriate advice treatments. Some will, but even then, if it doesn't suit the neuro it may not help anyway.
      But I am tired and have fallen into rambling rant mode, was only going to write the first sentence. I would edit but Ocado have just pulled up. Other delivery services are available. 🙂

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