The All Party Parliamentary Group for CRPS

The forms for this will be submitted this week. I have also contacted 2 Professors and 2 Doctors who are interested in forming a medical team to give evidence and advice.

If you want to be part of a group to shape the future of CRPS in this country I need to know., It's taken nearly 5 years to get this far and I can't go further unless you get involved

20 Replies

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  • Hi.

    I would like to be involved within the group if possible?

    I have had Chronic Pain since 2005 & the past few years have been

    very difficult.

    You I would like to be involved if possible ??

    Steve.

  • Once I have the Names of MP's and Lords I will launch a number of Facebook pages if there are enough people who want to help

  • Yes please let me know how I can help!!

    Steve.

  • count me in, just let me know.

    thanks.

    Amy.

  • Hi Kev,

    What would you like us to do?

    Jo

  • Would be interested, however I avoid Facebook like the plague for security reasons.

  • There are so many things you can all do recruit more MP's, possibly work with the medical team, advise on the steps I am asking the APPG to take. Help set up support groups in your area. Attend the APPG public meetings, There are a few other things but I cannot talk about them yet.

    John can you not set up an ID solely for these pages until we can afford to get our own website

  • I am a Disabled War Veteran and am trying to get my GP to diagnose CRPS so I can get some help. Living on the Welsh borders, and belonging to a practice that almost denies the existence of this Syndrome, I am feeling very low, unsupported and in need of help. I hope your approach to the Government (will it cover NHS Wales as well as NHS England?) gets results.

    Would it be helpful if I approached my own MP here?

    Good luck.

    Dee

    P.S. As with JohnSmith, I don't use Facebook for security reasons.

  • Does this panel include Fibromyalgia pain?

    Maggie x

  • Maggie Not at the moment although it is my belief that Fibro is another form of CRPS and I have asked the medical team to consider the possibility.

    I will be inviting HS England Scotland Wales and NI to send representatives and once the Facebook pages are up as asking everybody to contact their MP's

  • Count me in

  • Please submit a post on here as i also don't use facebook

  • The first public Meeting of The All Party Parliamentary Group for CRPS will be on Oct 29th, 5 years to the day I sent my first e-mail. It is vital we get as many sufferers as possible there so please share this with as many people as possible

    Some APPG pages will be going up on facebook over the next 2 days

  • How can I help iv had CRPS since feb 2013 and have many ideas that may help others that iv learnt through the steep learning curve I took once diagnosed just over two years ago

  • The first Public Meeting of the APPG will be in London on 29th of Oct. There is a lot of work to be done and I am not allowed to post links so if you want to get involved please e-mail me on RSDFighter@hotmail.co.uk

  • Professor McCabe probably the top specialist in the country has confirmed she will attend

  • I would very much like to help with this.I am suffering from CRPS in my injured hand and uninjured hand.The pain seemed to die down a little but since my second operation on my wrist it has really seemed to inflame.I find the pain from mild to intense but hate taking pain killers as they leave me too tired and irritable to cope with life in general.I do try to use my hands as much as possible but sometimes using them makes the pain worse?

  • If you look on facebook for the All Party Parliamentary Group for CRPS you will find us

  • How do I get involved in the All Parliamentary group for CRPS please? Many thanks for all the work you've done

  • go to facebook in the search bar put in The All Party Parlimetary Group for CRPS and you will find us

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