Debate in Parliament re Fibromyalgia — Scope | Disability forum
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Debate in Parliament re Fibromyalgia

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Shlbly
Shlbly Community member Posts: 136 Pioneering
in Disability rights and campaigning
hi all there is a debate over in Parliament this morning re Fibromyalgia and whether it is a long term disability.
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  • Misscleo
    Misscleo Community member Posts: 647 Pioneering
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    Right so what time so ee can watch it
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  • Shlbly
    Shlbly Community member Posts: 136 Pioneering
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  • poppy123456
    poppy123456 Community member Posts: 54,063 Disability Gamechanger
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    Thanks, will watch that.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
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  • poppy123456
    poppy123456 Community member Posts: 54,063 Disability Gamechanger
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    Virgin channel 612 doesn't exist.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
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  • thor14
    thor14 Community member Posts: 39 Connected
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    Hi there I tried that channel aswell & cannot get it either.
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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    I just put that on s post as well lol 
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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    Just heard some news .I'm checking just now that fibromyalgia has been classed as a lifelong disability from today. !!!!!!
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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    https://parliamentlive.tv/event/index/4f090137-2b52-4604-9fff-c6e4c2a19336
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  • ncps
    ncps Community member Posts: 30 Courageous
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    Can anyone update me pls this link won't play and no brexit has kick off I doubt very much if fibro will get a look in

    Lou

    Northants chronic pain support

    www.ncpsuk.com


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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    If you look up parliament TV for today at 9.30 am  you can view the debate 
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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    Parliamentlive.tv player today 930 am 
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    Hi all,

    Great outcome! Fibromyalgia Action UK shared this update from BBC News:

    'Phenomenal' response

    The motion to back extra help for sufferers was passed unanimously.
    Speaking after the debate, 26-year-old Ms Lakin said getting such support was a huge boost.

    "It is really phenomenal," she said. When there were 'ayes' all around the room I was in shock. I couldn't believe it.

    "It's going to make a lot of changes to people's lives. I can't even put it into context yet what it is going to achieve."

    Work and pensions minister Sarah Newton paid tribute to Ms Lakin's campaign.

    While insisting the benefits system did recognise fibromyalgia as a disability, she accepted more work needed to be done and invited campaigners to meet with her and other ministers for further talks.


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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    It’s awesome and so heartening! It’s hope for the future! My mp Paul Masterton was there and spoke on behalf of a constituent and has been keeping me up to date. 
    Heres what he wrote to me 

    “I have copied below a link to the response to the debate from the Government Minister which I hope you find encouraging.

     

    It can be read in full at http://bit.ly/2TV6dhc but the main points she made were:

     

    • she is going to convene a cross-Government summit, with ministers from the DWP, Health and Equalities department
    • the Royal College of General Practitioners and Arthritis Research UK have developed an e-learning course on musculoskeletal care, which includes fibromyalgia and is free to all healthcare professionals
    • fibromyalgia is recognised as a disability under the 2010 Act
    • healthcare professionals who undertake the work capability assessments have had training in fibromyalgia, but much of that has only happened in the past year, and so experience is different and patchy, and she is going to look at this again. She accepts there is a problem with fibromyalgia being properly picked up and taken account of in the assessments and committed to improving this.”
    • Cheers!
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  • XenasMum
    XenasMum Community member Posts: 27 Connected
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    I applied for PIP 18 months ago and was turned down I scored zero points 
    Can you just put fybro down or do you have to explain how it impacts you, as I've had a nightmare trying to do that 
    Thanks 
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  • poppy123456
    poppy123456 Community member Posts: 54,063 Disability Gamechanger
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    XenasMum said:
    I applied for PIP 18 months ago and was turned down I scored zero points 
    Can you just put fybro down or do you have to explain how it impacts you, as I've had a nightmare trying to do that 
    Thanks 
    Hi,

    PIP isn't awarded based on a diagnosis. Just putting down that you have fibro won't award you PIP. It's how those conditions affect your ability to carry out daily activities based on the PIP descriptors.

    You need to give as much information about how your conditions affect you as possible. Adding 2-3 examples of what happened the last time you attempted that activity for each descriptor that applies.

    If you're not success then Mandatory Reconsideration then Tribunal is always the best way. Constantly re-apply when you're refused isn't the answer because using the dame evidence you previously used will most likely see another refusal.


    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    I originally claimed pip for a few conditions including chronic pain which is now diagnosed as fibromyalgia. So when I got to tribunal I could explain more about fibroand chronic pain. Definitely do your research online as there are many ways fibro can affect your body and mind and day to day living. Focus on how it affects you for most of the time providing real life examples day to day. Good luck 
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