Part of this is a repost from ProfG and follows on from meet and greet at MS Life 2014.
One thing that is clear we need to support all aspects of
Education, Education, and Education
MS Society has, is and needs to be as proactive in this as possible, otherwise the Postcode lottery will remain.
The "Meet the Scientist" session at MS life 2014 was a positive and busy time and provides a good way of giving people of access to science.
ProfWoodRoofe from Sheffield and ProfPaul from Amsterdam talk on a one to one with MSers (Yes we got their permission). The Meet the Scientist is not just a Barts thing
We as scientists need to do more! There are MS Society branches that have never had a visit from any Scientist or Neurologist. To academics out there maybe time to give more back for the support you get or have had from people rattling tins and organise more "public engagement" activities.
To you at MS Society branches or Chapters, You can be the catalyst, why not find out who are your local researchers and them invite them to come and give a talk...We are all big mouths and love an opportunity to spout.
I did one using a portable 5cm Beamer to project slides. But you don't need slides to be able to talk and answer questions. The more you know about your disease and the treatments the better able you will be to make the best choice for yourself.
Education! Education! Education!
This will help beat the postcode lottery in your area.
An MS specialists is likely to more informed and up to date than a generalised Neurologist...Who are you speaking to
It was proposed by ProfG that one way to drive a change in practice is for MSers to ask their neurologist the right questions!
"The following is a list of questions you may want to ask your neurologist when a decision is being made about starting a disease-modifying therapy (DMT) for treating multiple sclerosis (MS)."
1.What is multiple sclerosis?
2. Are you sure that you have MS?
3. What type of MS do you have?
4. What prognostic group do you fall into? 5. What is the risk of you not being treated with a DMT?
6. Do you have active MS?
7. Am I eligible for treatment with a DMT?
8. Do you understand the difference between the treatment strategies of maintenance-and-escalation and induction therapy?
9. Do you understand the concept of treat-2-target of no evident disease activity (NEDA)?
BASED ON CONVERSATIONS A GOOD PRACTICAL SESSION OR CLINICAL SPEAK FOR MANY PEOPLE WOULD BE
HOW TO GET A SECOND OPINION....IT IS YOUR RIGHT!
Many MSers at MS life had no trust in their professional carers, "Often the sit back and wait brigade that are so laid back they do nothing"..whilst time is Brain
They may well be taking the standard path but an MRI every nine years is not that good based from our neck of the woods, Maybe "name and shame" (but please don't do it here as I get in enough trouble as it is:-)) is the way to get certain regions to up their game
However, you can be as proactive as possible to avoid this and it doesn't have to mean moving.
If you are not convinced of the actions of your GP or Neurologists you need to seek a second opinion.
If you are in the boonies the chances of an MS specialist being in your locale is more limited but there are big cities all around where MS neuros lurk.
Technology could allow the Neuros to come to your local hospital, will this be away to get rid of the postcode lottery?. A computer camera and a few screens don't cost that much. I have seen it done and work.
Labels: MS Life