All RSD/CRPS sufferers

On 9th July 2013 my MP Iain Stewart got a debate in Westminster Hall, at the end Norman Lamb said "I am more than happy to discuss further how we can improve outcomes for people suffering from such a pernicious condition" Afterwards he told me in front of 4 witness "if you send in a list of suggestions on how we can help sufferers I will go through it with your MP and see what can be done. Iain Stewart sent him the letter mid August. This is a short version of the 7 steps I and some other suffers came up with.

1 Changes to NHS Choices pages so they are accurate and show the 3 treatments which must never be used

2 An e-mail to every Trust Hospital Clinic Surgery and Dentist telling them about CRPS and the 3 treatments which must never be used

3 Teaching CRPS in every medical school

4 Debate in the full house PM and Sec State for health to meet sufferers then press conference

5 Office to collect collate and disseminate papers from around the world.

6 4% of any NHS underspend to be devoted to CRPS in 2012 that would have been 36 mill they spent 200,000 Cancer got 5,81 billion

7 to use me as a guinea pig for a possible cure

Norman Lamb has failed to even acknowledge the letter let alone hold any talks despite my MP asking why not.

Ian a sufferer from Northern Ireland contacted me a few months back, he arranged to see his MP and the result was that David Simpson met Iain, they have decided that to force action they need a group of MP's so big they cannot be ignored. Sufferers on Facebook and the Pain Support Forum are contacting MP's and arranging to see them explain our condition and how from something as trivial and a sprained wrist or twisted ankle they their family or the friends could end up like us or worse. I am supplying them with documents and a video for their MP's but we need may more.

If you are willing to fight for yourselves, the 16000 diagnosed sufferers and the according to 4 separate medical sources between 240 and 466,000 un/misdiagnosed in the UK then please message me.

[Boozybird]

MPs have the advantage - some of us are too zonked out by pain and it's current treatments...

[briar-rose]

hey Kevscar, yes would be very interested in joining the fight, something needs to ne done, over half the medical staff I have come across have never heard of CRPS, so have to explain it to them, is very frustrating, and I totally agree something needs to be done, I have been very lucky in that my dentist already had a patient previously with it and after being referred to the wrong pain clinic, have now been to the right one and he has been sorting out the further tests required amazingly fast. my Email is [e-mail] look forward to hearing from you.

Amy.

[BeccaWhite]

Hello. I would be interested in doing what I can, which isn't much, I grant you !

I am [e-mail]

I wait to hear from you

[Hidden]

If you e-mail me [e-mail] I can send you a sort of template to use documents and a video to send to them. Try to get a meeting mine came to my house Ian went to see his, I believe that once they see how bad this can be how it affects not just us but our families as well and realise that they could end up like us or worse from something as simples as a twisted ankle or sprained wrist they have a great incentive to fight

[sharelle]

Loving your campaign. All chronic pain needs to be made more aware of in the media and by health professionals. I'm doing a questionnaire to try and highlight problems but sadly not many people have asked for it :(. Can you tell me what 3 treatments you should avoid? (I don't have crps but have constant pain). Thanks

[Hidden]

Send me your questionnaire and I'll do it for you

Ice this will lead to permanent damage to the blood vessels and restricted blood flow, I know of 2 instances in the UK where the damage was so bad they developed gangrene and had to have amputations to save their lives. Hot and Cold Water Contrast Therapy, they had doing that 3 times a day for 7 weeks you can see white lumps in the blood vessels, some have virtual disappeared others a blue and swollen, the main one now does a big dogleg and my blood flow is restricted. Aggressive Physio the American Journal of Medicine says this must never be used, my physio,s were extremely aggressive ad because I trusted then I told them to carry on even when I wanted to scream stop. When I finally got to see a specialist he said they had ruined any chance of getting reemission and made it more likely to spread, has twice so far. Physio should only be undertaken after pain medication, should be gentle but intensive Lots of it and do it at home) and you must insist on them stopping the moment the pain goes up. You need a desensitization program gentle massage gentle movement exercise, I found soaking my hand in lukewarm water was good at reducing pain. ask them to do mirror box therapy that's proven to help.

[sharelle]

Sorry for the delay, only just found this! Thank you for your response, your information was really helpful x