The All Party Parliamentary Group for CRPS - Pain Concern

Pain Concern

38,219 members11,764 posts

The All Party Parliamentary Group for CRPS

20 Replies

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
Steve49 profile image
Steve49

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

Steve49 profile image
Steve49 in reply to

Yes please let me know how I can help!!

Steve.

briar-rose profile image
briar-rose

count me in, just let me know.

thanks.

Amy.

Clycat profile image
Clycat

Hi Kev,

What would you like us to do?

Jo

johnsmith profile image
johnsmith

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

CRPSWelshBorders profile image
CRPSWelshBorders

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.

maggi999 profile image
maggi999

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

Ohtobepainfree profile image
Ohtobepainfree

Count me in

FRreedman profile image
FRreedman

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

Trishmurfin profile image
Trishmurfin

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

dianadoors profile image
dianadoors

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

rachel44morris profile image
rachel44morris

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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