My MP is going to ask parliament to debate our situation/condition after the Eater break, on his own he is unlikely to succeed so if you want the government/health dept to do something to prevent others going though what you have please e-mail your MP today.
Tell them the name of this condition. That it is the worlds most painful incurable one and as much of your story as you are comfortable with, at the very least tell them how long and how many doctors before you were diagnosed. That 95% of the NHS have never heard of this condition but according to figures in a paper published by the Royal College of Physicians last May there maybe 480,000 sufferers on the UK and less than 20,000 have been diagnosed
Ask them to read these links and spare 5 mins to watch the video.
Tell them that Iain Stewart is going to call for a debate on this after Easter and ask, beg , plead whatever you feel is appropriate that they contact him ASAP to offer their support in anyway they can.
Please don’t think I’ll do it later do it right now.
Kevin
9 Replies
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Kevin, if you want real action, volume of petitions and free media coverage of your condition, lack of nhs treatment etc join 38 degrees and ask them to carry your campaign.
38 degrees is a free organisation whose sole purpose is to challenge the government over a variety of issues. They organise petition signing over the internet and have recently started sending their members to speak to ministers.
Their success rate is astounding in delaying and preventing govt decision. Even if they don't suceed they bring a huge amount of media attention to each case, and those cases that are not sucessful are revisited in the future.
If they can't help you within your timescale, (as I get the impression your MP is ready to present the case) they will certainly be able to help with advice, how best to present the case etc.
really when i was told i had crps three doctors had to convert it when i told my gp he laughed i felt like a liar to be honest i don't think he knew what it was
Hello
So sorry that you cannot get the treatments, that we all deserve in an NHS environment, All I can suggest is same above and keep fighting. At the moment the jury is out with the new set up introduced yesterday, the only thing many , are saying is it is a further cost cutting exersize , and it will be the disabled that will feel the pinch. The saying that if I have not got it way should I pay for it comes to mind.
Yesterday my wife was taken to hospital with a broken toe, although it was very busy she was seen very soon and was out within two hours, the NHS is still a good service and we could not praise them enough. It is not the staff on the front line but the managers and Government above
All I can suggest is keep knocking on the door, someone will let you in
GOOD LUCK with this life journey
BOB
maybe good for simple things but I have had my conditon made permantly worse by 2 different so called specialists. Where my condtion is concerned we are a third world country I have proved that even our top specialists are 20 years behind the rest of the world
I've had CRPS for 8 years now i've taken every pill and i'm taking over 30 pills and morphine based 20 mg it started with going for an x ray in my left wrist showing a fine line brake to mr going bk next day to get a chark on to seeing a surgeon telling me that the x ray was wrong to having surgery on my left wrist being operated on 3 times and getting carpal tunnel my surgeon turned round and said he was sorry that my arm was worse than ever but it wasn't his fault and it wasn't my fault either still to this day i still see my pain management psychologist mental health plus i do were a hand brace still i have to get my hair washed by my daughter help get dressed i never leave my home only when i see my gp or need to go to hospital i just had opp on my eye with skin cancer they had to restore my upper and lower eyelid i have CRPS grade 1 i have depression anxiety panic attacks arthritis etc
So glad this is being debated and I am more than willing to share my own personal experiences. I dream of a cure to CRPS every night I go to bed hoping to wake in the morning to find out it has all been a nightmare. Anything that mat help or will raise awarness has to be a good thing.
i am writing my MP email and came across this when i was looking for useful links to add in to it. the video in the original post doesn't exist when i click on it so i don't know if its the same one. Apologies if it is
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