Wednesday, 26 June 2013

Time to Lobby?

This is a repost....

There needs to be a political response to help get people access to highly effective DMT. 

This needs co-ordination......who are the champions?


Not this lot? But can they help?

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 and labour is not something that happens in pregnancy :-)
 
I wrote to my MP about this via fax your MP, who responded within 24 hours (so they keep their response rate up) and she wrote to the Health Minister who responded sadly with a cut and paste response that could have been done by a robot and was totally inadequate...It was frankly patronizing. 

Lord Dubs never responded so we can ask what is this lot of Parliamentarians doing for MS? 

I will go back to them but need to get something for them to read first

2 comments:

  1. We need much more than letter writing and an e-petition. We have to be much more militant, combative and media savy. We have nothing to lose.

    Our current approach reminds me of Red Dwarf's Arnold Rimmer after his anger emotion had been removed: "Call it extreme if you like, but I propose we hit it hard and hit it fast with a major - and I mean major - leaflet campaign".

    I'm up for it.

    ReplyDelete
    Replies
    1. I feel as though I have been banging my head against the wall for the last ten years.
      This article made great sense.
      I have seen my own health dive after treatment was withdrawn.
      Now I'm told I'm secondary progressive.
      I find I can no longer cope with duality.
      My ability to change from A-B has almost vanished and yet I can still express myself.
      Why was my treatment withdrawn ?
      Was I given a coice ?
      Why was that choice taken away from me ?
      Was it because someone decided to cut costs.
      Have the consequences been assessed.
      Have they been tested.

      All I know is my life went down the pan straight after diagnosed and I havent survived any of it.

      Delete

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