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First Uk party policy on ME?

Discussion in 'Advocacy Projects and Campaigns' started by Emsho, Sep 8, 2018.

  1. Emsho

    Emsho Established Member (Voting Rights)

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    At #MEAction Scotland one of our projects is getting political parties to adopt party policies on ME. This means if they get into power, they should enact these policies!

    The Scottish Lib Dem conference was today, and they voted through a motion which means biomedical research, and removal of GET will now be party policy (for more info on how this came about see here:https://www.meaction.net/2018/09/07/scottish-liberal-democrats-will-vote-on-motion-for-me/). It was originally removal of GET/CBT but a member submitted an amendment to drop CBT, which passed.

    I wondered if they're the first political party in the UK to have a policy on ME? I thought the longer term advocates on here might know!

    For any international readers, the Lib Dems have 5 MSPs, so they're not a big political party in Scotland. However, it's great to have their support, and was really heartening to see how many healthy allies engaged with the issues and supported the motion. We do have cross party support, so hopefully this is just the first...

    Edit: correction, I originally said Lib Dems have 9 MSPs, but they have 5 MSPS and 4 MPs
     
    Last edited: Sep 10, 2018
    hinterland, Joh, RuthT and 45 others like this.
  2. Trish

    Trish Moderator Staff Member

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    Brilliant news @Emsho, well done to you and the other advocates in Scotland.
     
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Well done, @Emsho, superb job!
     
  4. Hutan

    Hutan Moderator Staff Member

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    That's really inspiring news @Emsho.

    I can see how that approach could work here in New Zealand to get one or two ME specialists in the country. Even 10,000 votes would be useful for a smaller party here, and, if the small party is needed to make a governing coalition, as the smaller parties often are, then acceptance of that policy may be one easy concession for the larger party to make.
     
  5. Barry

    Barry Senior Member (Voting Rights)

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    I don't know for sure, but my guess would be that until now any party's policy on ME has probably been to not have a policy - or at least not one they would want to publicly own up to! Excellent news. Congratulations :).
     
  6. Barry

    Barry Senior Member (Voting Rights)

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    Do we know yet what that policy actually is? Or is that another step from where things are now?
     
  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    https://www.libdems.org.uk/scotland

    Just looking up to see if Scottish and Westminster Libdems ally themselves in any way.

    @Emsho - is the above link accurate as far as you know?

    Many congratulations. Great news.
     
  8. Andy

    Andy Committee Member & Outreach

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    There seems to now be two narratives about how this came about...
    https://www.actionforme.org.uk/news/scottish-liberal-democrats-adopt-new-policy-on-me/
     
  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Having read both articles, they both seem to say the same thing: it was Emma Walker, a Lib Dem member with ME, who suggested the motion. Both organisations appear to have had information stalls, but neither is outright claiming it as 'their' triumph, as far as I can see.
     
  10. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Well I think it was #MEaction Scotland who more were the drivers and the other charity the tag along unless they were both invited. Odd because they’re writing separately yet must have been aware of each other etc and with their seeming (unfortunate) connection via FME they didn’t talk previous? I’ve queried it and posted on AFMEp page too. They generally claim Scotland as their territory but have a weak record on achievements on everything AFAIC. I see MS society are organising another petition, this time against NICE refusing a drug for PPMS. When did AFME last challenge the establishment behaviour on anything as an “action”patient movement, 2003?
     
    Last edited: Sep 10, 2018
  11. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    #MEAction say they advised on the motion. AFME attended with a stall
     
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    That's probably correct. The latter article does imply AfME was involved. If they just ran a stall, it seems a rather selective presentation of the facts.
     
  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Well, they do have form for that!
     
  14. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    To be fair I will put the Facebook responses, nothing untoward going on it seems, both charities did the same thing in response to action of a Lib Dem member by the looks but the first was sought for advice:

    #MEAction Scotland

    Emma Walker who is a member of the Lib Dem’s was the driving force and she is keen to keep things moving forward. She approached MEAction Scotland for advice on the background to the motion and we took a stall at the conference so we could support the motion. Action for ME also had a stall at the conference.


    Action for ME
    Yes, we were delighted to work alongside MEAction Scotland at this event and are so pleased with the outcome of the day. In having both charities present, we were able to successfully communicate the impact of M.E. to most of the delegates that were there.
     
  15. Goldfinch

    Goldfinch New Member

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    To clarify.. I work with MEAction Scotland and have been involved in the motion.

    Emma Walker contacted MEAction Scotland about raising a motion. We worked with her on drafting the motion (it echoes the main aims of our petition) and have been in contact with her throughout. We also got a stand on the day. AfME had no involvement.

    AfME also got a stand on the day, independently of us.

    (Louise )
     
    Last edited: Sep 10, 2018
  16. Emsho

    Emsho Established Member (Voting Rights)

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    I can't take credit! All down to the Emma Walker and her friend, we (MEAction Scotland) just advised/worked with them on it.

    @Goldfinch pretty much sums it up. I don't see a problem with the AFME article, seems to me they were just reporting the news.

    Ironically, the whole point of the article about the motion (https://www.meaction.net/2018/09/07/scottish-liberal-democrats-will-vote-on-motion-for-me/) was about how our individual actions can come together to make change :laugh:. That's the great thing about being part of a team, and the wider ME advocacy community. Often it's not up to an individual or charity, but many different actions/people. Saying that, this motion was down to Emma Walker. Who is awesome.

    I wonder if it was this sentence that was confusing? When we we reported about the Lib Dem motion on social media we got loads of comments asking why we weren't talking to other political parties. I was trying to avoid that, as we're talking to a few parties about getting motions for their conferences next year!

    Yes, looks accurate.
     
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    LibdemVoice article including Emma Walkers proposal speech.

    https://www.libdemvoice.org/scottish-conference-passes-groundbreaking-policy-on-me-58569.html
     

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