Of course I would, and thank you for asking me. Fingers crossed we get a response.

Have you asked this question on other sites with British CRPS participants? I know that KneeGeeks has several British sufferers on it, and there must be other sites too, and Facebook pages.

Bram.

I'm going to be writing to my MP from the perspective of someone newly diagnosed and the ways in which the lack of knowledge and awareness about the disease affects me at what I must say is a very difficult time.

However, I do not, as yet, have any experience with the NHS in relation to this. So far, I have been dealing with private doctors through my insurance. I don't even want to think about dealing with my GP for this. I had to tell him what to prescribe for my migraines. He also thought the torn cartilage in my wrist was arthritis.

I've written to my MP about it and have had a reply suggesting he's interested in finding out more and will be attending the debate. Yes. I know he's a politician and is hardy likely to say anything else!

I've been really lucky with the NHS. I've had a great consultant, an excellent physio. I've also been fortunate to have a GP who has come across the condition and has sensible suggesions. I've passed this on to me GP, along with an explanation that this is rarely the case

Have you got a link to KneeGeeks searched but keep ending up on Knee guru and get this

Advertisement


KNEEgeeks Database Error
Please try again. If you come back to this error screen, report the error to an administrator.

KimA
Thanks Please include as much from my opening post as you see fit, can you say that you have mentioned it to your GP and he knows niothing about it

It's ok Kev, I'm a member of KneeGeeks, I'll put a thread up on there today with the info from your opening post

Bram.

To Laurence Robertson, MP

I wrote to you on the 24th May 2013 regarding Iain Stewart MP needing support to call for a debate on CRPS in the House of Commons. He has 4 MPs in support so far with others being petitioned by their constituents, and if you were to add your support to the growing numbers it would be enormously appreciated. This is a very important issue for myself and others like me who suffer from this crippling and little-known disease, and I am disappointed that I have so far heard nothing from your office to even acknowledge receipt of my e-mail. I know that you must be very busy, but is my understanding of Parlimentary rules that a member of the ruling party is required to take up his constituent's concerns with the appropriate Minister, and I hope that you will respect your party's ideals and support a disabled constituent who voted for you in the last election.

Just a small poke in the ribs...

Bram.

Got a reply at last....well, an acknowledgement at least! Hopefully he will reply in more detail, I responded and told him politely that I hoped he enjoyed his holiday and looked forward to hearing from him soon....

"I am away from my office today so can't check my past emails, but will do so later. I was on holiday from the 24th and have received over 2,000 emails since then! However, I apologise if yours was missed and I will look into the matter and get back to you.
Best wishes
Laurence Robertson MP"

is there something the people in America can do to help as well. I mean we are all in this fight together and if we all scream in one loud voice . it makes it hard to ignore..

You could always write to the Prime Minister, David Cameron? If you mention all the same stuff, and Iain Stewart's name, they should be able to connect the dots... Do a copy to Iain Stewart as well, then he knows what's going on. All the email addresses should be on the government website.

Great idea!

Bram.

E-mailed Cameron and clegg Oct 2010 No reply again 2011 no reply 2012 Cameron said it was a matter for the health dept desite 3 times getting a automatic e-mail saying clegg was busy but would get back to me he never did