Thursday, 29 November 2012

All Party Parlimentary Group for Multiple Sclerosis

Minster for Health; Jeremy Hunt (Constiuency-South West Surrey) 

Did you know that there is the All-Party Parliamentary Group for Multiple Sclerosis who aim To promote the interests of people affected by MS.  Now we know who to lobby


Chair               Lord Dubs
Vice-Chairs     Stephen Lloyd, David Amess


Treasurer         Pamela Nash

GOVERNMENT

James Gray – Con

David Amess – Con

Bernard Jenkin – Con

Chris White – Con

Lord Bowness - Con

John Hemming – LD

Stephen Lloyd – LD

Annette Brooke – LD

Lord Jones of Cheltenham – LD

Graham Brady - Con


OPPOSITION (NOT IN GOVERNMENT)

Catherine McKinnell

Joe Benton

Paul Blomfield

Tom Blenkinsop

Richard Burden

Michael Dugher

Pat Glass

Clive Efford

Pamela Nash

Lord Dubs


For Non-UK readers. Con does not mean criminal/convict but Conservative party and LD is Liberal Democrats and not Linkage disequalibrium :-)
 
My MP is a Cabinet Minister so getting response could be interesting 

12 comments:

  1. Sorry, I was going to post a comment. I thought I was on Bart's blog, forgive me.

    Regards as always.

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  2. I think we should push for a meeting with these guys to put them straight about a few things.

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  3. Really, all those emails must have caused a stir in the teapot.
    This is very interesting, of course you know what I like to tell them.
    Vascular Malformations Venous Insufficiency being my pet subject. :)

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  4. Vascular malformations.....do not have sufficient evidence base...yet,the ones G suggest have an evidence base.

    But I take your point that such a system would allow the CCSVI issue to be addressed. We have said all along that people being treated should be part of a trial and not paying for it.

    It takes effort. Had practitioners of the balloon had got off their bums and shown some energy rather than a will to make Private patient cash, there could surely have been studies here. Now it would not be a good use of resource as the trials are ongoing.

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    Replies
    1. http://www.guardian.co.uk/science/brain-flapping/2012/nov/29/pseudoscience-science-argument

      ;-)

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    2. The Guardian article is just brilliant

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  5. I am in touch with Stephen Lloyd and my daughter's MP is Jeremy Hunt. The Vascular Society have not been very supportive. They started off being interested but after a discussion with the MS Society it all went quiet and eventually my contact became very guarded. The only clinic who did the treatment privately wanted to set up a study, but cannot get funding.

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    Replies
    1. So we can see the differnt reponses from MPS if we plan this right

      Only clinic wanted to do study ...if there is a will is there a way.
      Maybe subvert some of that private lolly and fund it themselves.

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  6. My humble opinion is that we need a change in legislation soon re: patient rights, by which I mean that MS-ers alone should decide which treatment (after consultation with a neurologist) they prefer - first-line drugs or second-line treatment. It should be left to our judgement since we are consenting adults to choose whether we want an early aggressive treatment with all the risks attached or not. At present this is simply ignored and every newly diagnosed person with a 'mild' course (which is rubbish, since the disease is not sleeping) are given interferons and such. This dogmatic thinking must be changed worldwide and politicians could prove an asset in PR. I am afraid that they may fear loss of popularity or have a more pressing agenda, though.

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  7. How many of those people are affected by MS?

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    Replies
    1. Who knows, are they in the closet? touched by a near and dear one? We know there are MSers in the Houses of Parliment.

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    2. A few of us at MS-CCSVI-UK did a FOI request to the doctors of just over 800,000 people and asked them how many of their patients had an MS diagnosis. The results showed that just over 2000 of them had MS which is about 0.25% of the population. If you extrapolate that to the population of the UK it works out at about 160,000.

      Delete

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