UK RSD/CRPS sufferers lease Help

This is the short version of the 7 steps Mr Lamb promised to discuss with my MP after we got a debate in Westminster but has broken his word and done nothing

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

A number of sufferers are now arranging to see their MP's to persuade them to join with Iain and form a group to big to be ignored. If you are willing to join us Please contact me on RSDfighter@hotmail.co.uk

15 Replies

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  • Hi kevscar

    MPS don't care about people who suffer with CRPS or anything else all they care about is them selfs, it's the same with the NHS. I had to go to the A&E last week because I had a fall I had been screen by three doctors and I told them that I suffer with CRPS and they just look at me and asked me what was that so I had to tell them how it started and that's why I had my left arm amputated and that I have it in my right and they still did not under stand it I also told them to look it up on the web site, it's just not A&E it's all of the hospitals.

  • not all MP's are the same parliamentlive.tv/Main/Play... the other 2 MP's in attendance were there because sufferers contacted them one only that morning.

    A N.I sufferer visited his MP in June and David Simpson has now joined the fight. As you can see from the 7 steps if we get a big enough group of MP's then every Medical Professional will know what CRPS is so new sufferers will not have to go through what you, I and thousands of others have.

    I can e-mail you a template e-mail to work from, would only take you an hour to do one yourself and you would find out if you have a good MP or not.

  • Can you tell me the 3 treatments that should never be used and why please?

  • Kevscar, I will mail you properly soon.

    I have been pretty poorly and have actually just had it confirmed that I now have osteoarthritis in the big toe joint of my RSD limb, a bursitis and the toes have all clawed.

    It seems I am in a bit of a flare again and we can only summise that the RSD has caused the osteo in the first place.

    I promise to mail you as soon as I can and I am sorry I haven't got back to you sooner.

  • Sharelle

    Ice, Hot and Cold Water Contrast Therapy, both of these will cause permanent damage to the blood vessels and restricted flow. I know of 2 UK cases were the Ice damage was so bad they developed gangrene and had to have amputations to save their lives. I have white lumps in the veins, some have virtually disappeared while other are blue and swollen. The large vein on the back of my hand now does a large dog leg.

    Aggressive Physio can causes spreads and ruin any chance of remission

  • Becca It is a known fact that RSD causes muscle wasting and osteoporosis. Biceps used to be 21in RSD arm is now 14 unaffected 17 1/2. Don't worry about MP until you're feeling better

  • I actually have osteoarthritis in the toe joint, no osteoporosis anywhere, thank goodness, and never did, even at my very worst stage twenty one years ago. My muscles wasted, obviously, and I do have a deficit on that leg in comparison to the other. But I have always tried so hard to maintain a level of mobility and strength in the leg so as not to waste too much.

    As I told you, I has aggressive Physio, even being made to use weights etc, so the muscles didn't ever get as bad as they could have.

    It's all a little confusing as osteoarthritis used to be thought of as wear and tear but that foot has not been properly weight bearing for twenty one years ! And I am only forty !

    All so peculiar, but then RSD us, right ?

  • Becca Unfortunately the aggressive therapy hasn't helped but made things worse. The American Journal of Medicine states it must never be used and when I finally got to see a specialist 1 year after the RSD started he said that what the physio's had put me through meant I had no chance of ever getting remission

  • What is RSD? I have heard of crps.

  • I would love to help as I can not agree more but husband I'll at present and finding life stressful so making rsd worse keep in touch I understand exacty what you say well done .

  • Danslatete RSD Reflex Sympathetic Dystrophy the previous name for CRPS and one those of us who were diagnosed them tend to stick to.

    Peacerose I.ve been fighting to get something done since oct 10 so there's no rush. When hubby feels better let me now

  • Thank you :)

  • Hi kevscar

    I have arrang to see my MP in the next week or so what would be the best way of telling him about CRPS because he will not understand what I am saying it will just go over his head and I do not think he will do anything about it but I will do my best to make him to understand what it is like to suffer with this

  • If you e-mail me your name and his name I will do a first contact e-ail similar to this

    Dear

    I have been asked by one of xxxxxx constituents to email her some information before she telephones to try and arrange a meeting as she got nowhere when she contacted you last year. (Your name) is one of approx. 30 diagnosed sufferers of Reflex Sympathetic Dystrophy also known as Complex Regional Pain Syndrome acknowledged as the Worlds Most Painful Incurable Condition a condition so painful that sufferers have attempted or succeeded in self-amputation. dailymail.co.uk/news/articl... ,yet unheard of by 95% of the medical profession, according to 4 different medical sources every MP has between 440 and 700 un/misdiagnosed in their constituency. According to US papers they are 900% more likely to commit suicide than any other croup in the World and in the long term 25% do.

    I have attached a link to a 5 minute video which I beg you both to watch, be warned it is graphic but it is the only way for you to understand just how bad this condition can get and what could happen to you, your family or friends from something as simple as a twisted ankle or sprained wrist.

    s834.photobucket.com/user/K...

    My MP Iain Stewart has been fighting to raise awareness of RSD/CRPS since 2012 and on 9/7/2013 got a debate in Westminster Hall which I have attached, afterwards Mr Lamb told me in front of witnesses, the 3 MP’s and my wife that if I sent in a list of suggestions he would go through it with Iain to see what could be done to find and help all sufferers, I have not attached the letter which was 8 pages long ( if you want it please let me know) just the 7 steps which would have meant no increase in the NHS budget, cost the DoH a maximum of £500,000 per annum yet possibly saved the country £3 - 4.5 Billion a year. Iain forwarded the letter to Mr Lamb in mid August 2013 and Mr Lamb has not even acknowledged the letter and despite a number of attempts by Iain it is obvious that giving his word means nothing and the fate of people he is ministeraly responsible for is not a priority.

    Recently a sufferer from Northern Ireland got his MP to join Iain and they are now looking to form a cross-party group large enough to force the DoH to take action.

    Please when (your name contacts) you take the time to visit her, Iain came to me because am virtually housebound, learn how long she had it, how many doctors before she was correctly diagnosed just how badly this can affect not just the sufferer but their families as well. Then she will ask you to contact Iain and ask how you can help

    and send the debate and 7 steps

  • RSDFighter@Hotmail.co.uk

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