Wednesday, 30 September 2015

Calling all Neurologists...Please Read.

A BBC report says
A brain specialist who advises the National Institute of Health and Care Excellence (NICE) says although disease-modifying drugs have a role in established relapsing, remitting disease, there is still debate about their use early on in the condition.


Please Read
http://multiple-sclerosis-research.blogspot.com/2015/09/politicalspeak-brain-health.html

Is the MS Community Prepared to Promote Brain Health?

With comments like the above......you have your work cut out ProfG & DrK.

The ABN (Association of Britsh Neurologists) must be such an amazing  place for knowledge transfer:-(

19 comments:

  1. Well said (and illustrated) MD, and there is good evidence that evidence alone is not sufficient to change practise. Remember we recently posted on the 'culture of head-in-sand' when it comes to using atraumatic needles for diagnostic lumbar punctures - even such a comparatively small change in practise appears to pose an almost unsurmountable obstacle. More than knowledge is needed to make change happen: http://multiple-sclerosis-research.blogspot.com/2015/09/its-ok-to-ask-for-atraumatic-needle.html

    ReplyDelete
  2. Yes, I agree that people should campaign to get treatments for MS. However, now I hear doubts about the efficacy of the interferons and they were the answer in the '90s. NICE knows that once they approve the therapies, they will face a backlash if they remove the licence because they aren't delivering results. You won't know for 30 years. Look how quickly the cancer fund ran out of money, that was always going to happen. Still waiting for a vaccination to prevent MS. Nobody should have to live with this disease.

    ReplyDelete
    Replies
    1. NICE position in 1990s was CRAB drugs were not cost effective that is why the risk sharing fudge was set up.

      Delete
  3. The question is, how much longer are people willing to put up with this?

    ReplyDelete
    Replies
    1. More on this here.
      http://www.theguardian.com/society/2015/sep/30/multiple-sclerosis-experts-call-for-end-to-wait-and-see-approach-to-treatment
      Interestingly NICE's "brain expert" (I won't mention his name to spare his embarrassment) seems completely unaware that "the experts say a treatment plan should be in place within six months. Patients should also have an MRI scan at least once a year.
      The consensus follows a meeting convened between the patient groups and the Association of British Neurologists. “They had their own process and came to the same conclusion as us,” “We reached agreement fairly easily that early treatment was important.” Some expert, eh?

      Delete
    2. Remember as reported by BBC. They may change the context of the quote. Surely anyone with knowledge of neurology would not be saying dont do anything when you now clearly have treatments with positive effects

      Delete
    3. I think possibly the BBC have got this a bit out of context maybe ?? as I understand Dr Chataway and Dr P Brex are NICE Guideline Development Group members and they are both MS neuros.

      Delete
    4. Note that the recent NICE Guideline for MS specifically excluded the use of DMTs from it's scope. So on this issue Dr Cooper would be speaking for himself, not for a Group that has never formally discussed this. Nor are NICE yet committed to examining early treatment or optimising treatment. They are merely committed to appraising the interferons and GA for their cost effectiveness. They should of course do both and I hope they will see sense and modify their scope accordingly...

      Delete
    5. A cancer patient told my parents the NHS will generally put a patient on the cheapest treatment to begin with whatever their illness.
      If that doesn't work or has side effects the doctor will prescribe another (more expensive) treatment.

      Delete
  4. At times like this my grandmother would have said 'Lord perserve us from the experts'.

    ReplyDelete
  5. Just shows how detached neurologists are from the evidence. Why is an epilepsy expert called upon to comment on MS? That is the problem Prof G and his colleagues are clearly not educating their colleagues. Please name one degenerative brain disease you wouldn't treat if you had an effective treatment?

    ReplyDelete
  6. How about rebranding those neurologists that conservative in their treatment plans to negligent?

    ReplyDelete
    Replies
    1. From web site about said Neurologist

      "I prepare 90-100 reports annually, for personal injury, medical negligence"

      So whilst chasing the medico-legal buck...maybe he could prepare a case against his own negligence, based on the ridiculous comments

      Delete
  7. Would have been better illustrated if the model had had his head up his ----. But that requires a lot of yoga practice, I would imagine.

    ReplyDelete
    Replies
    1. Like this one

      http://img1.wikia.nocookie.net/__cb20080402233507/uncyclopedia/images/2/2e/Head_up_you
      r_ass.jpg

      Delete
    2. Bang on - well done MD! (I was too scared to search for "head up ----" illustrations, thinking of what might appear.)

      Delete
  8. I am a 47 yr old female who had an "MS" related episode in 2007. I lost use of my right arm and leg and speech for a short 3 week period, but responded well to steroids and made a full recovery. I was told they would not diagnose MS until I had experienced a similar episode. A subsequent brain scan 12 months later proved new lesions. I was told they treat the person and not the scan!!!! the fact that I was ok they only diagnosed probable/possible MS but not directly to me, this was on my paperwork! I do worry! and although thankfully I am fine at present and have had no significant episode from reading your postings and comments it seems to confirm my worst fears that I should have followed my instincts early on and pushed for intervention eg medication, to halt the progression. I do remember asking and was told there was no point. I do live my life mostly in denial but I do feel abandoned a little with it, I know it's all down to money but it can be a scary place to be.

    ReplyDelete
  9. It's a very scary place to be. What we all need is support and care . I'd like an MRI every year. I'd also like a regular neurophysiology review and therapy to prevent further injuries. My knees are being pulled apart by my spastic ligaments.

    ReplyDelete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.