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No more Mr Nice Guy


Kevscar1

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For 2 years niw I have asked requested pleaded and even begged the Government to do something to find the un/mis diagnosed sufferers of my condition add to inform the whole of the medical proffession of it's exsistance and how seriuos it is. The DOH won't eve send out one e-mail to every Trust Hospital surgery and clinic in the land despite me offering to pay the cost of one person doing it. Now it's time to play hardball. I haven't read a newspaper in over 3 years so I need to know which is the most virulent anti- government out their because I have a story that#s going to make a lot of people angry.

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Kevscar1

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FE We are barely surviving on the beneifts I get so I couldn't afford to get the sound track done professionally, had to do it through a lapel mike straight into the computer. Despite that it's had 538 views since I put it up on the 24th. Since Joining facebook on 26th October it has gone on 71 peoples timelines. 3 more US sites have joined the campaign I have one preson whi is going to spread it in Canada, 1 in france I in Italy and one in Australia, 1 US Doctor and 1 chinese. 6 from the UK will be writing to their MP's. 2 days ago with the hekp of another sufferers we set up a petition and causes page with the aim of getting 100,000,000 sinatures worldwide by 15th October 2013. So far 129 with 1116 invires out. Each person who signs is passing it onto their friends. Not to bad for an amatuer video

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Kevscar1

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A194 There have been no replies from the people on that site for over 2 years. Most other UK sites are either gone or the original starters no longer post, the biggest UK forum has more than 750 members but it only ones who have joined this year, after a couple of posts they realise it's dead and don't come back. Facts and Figures are not a problem, gave up keeping trakc after 2000hrs research, have 100+ links in my favourites and about 130 documents downloaded.

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Forum Editor

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"have 100+ links in my favourites and about 130 documents downloaded."

What I find difficult to understand is why - if there are so many links and documents - the medical profession isn't as aware as you would like it to be.

You say that "The DOH won't eve send out one e-mail to every Trust Hospital surgery and clinic in the land", and there must be a reason for that. The UK charity RSD UK was formed in September 2000 following realisation that support and information services for RSD/CRPS patients and families were difficult to find. That charity, and its website has since been wrapped up, and there must be a reason for that.

The NHS is very well aware of the condition - it has a page on the NHS choices site so I'm not exactly sure what the objective of your campaign is - what is it that you want to achieve?

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spuds

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Kevscar1

I know this as been a long drawn out and painful problem for you, and know you are trying to get world-wide support, but have you tried Independent Complaints Advocacy Service (ICAS) or the Parliamentary & Health Service Ombudsman (PHSO) for help or support?.

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lotvic

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Kevscar1, I know you've already got a lot of info but wondered if you are keeping tabs on the clinical trials for 'Complex regional pain syndrome' for treatment. This list and this one and also this (depending on how the links work you may have to re-input the search term)

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Kevscar1

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FE That page is what I am trying to get the DOH to include in there e-mail Take my storey the surgeon that did the op, nurse there and the physio ad never heard of it, 4 doctors and 3 nurses at my surgery never heard of it, hand therapist 1 diagnosed me then gave me 2 of the worst possible treatments the other 4 had never heard of it. Surgeon said I had signs of it and siad he would operate, you only operate on RSD sufferers if it is absolutly neccesary because over 60% of operations cause RSD at the incision points. Paun Clinic Doctor claimed to be a specialist yet gave me gaunethedine blocks 17 years after they were first declared to be useless on RSDer's and 7 further studies had confirmed this. Used ordinary needles when you are supposed to use peadatric ones When I got to a specialist he sent me for an infusuion without telling them what I had or how I needed to be treated, no one on the unit approx 12 had ever heard of it so I ended up with an infection upto my shoulder and 6 or 7 DVT,s in my arm in another hospitals acute care unit 6 day later. Walked out refusing treatment when I twice told the admitting doctor what RSD was and she couldn't touch the hand and she twice tried to grab it to take blood. Last year the specialist tried to arrange funds for me to go to Germany for the 5 Day Ketamine Coma 18 months after I had read they banned it due to a number of sufferers not coming out of the coma and at least one death. If you were to trawl the forums you would see dozens of UK sufferers who were not correctly diagnosed for 10 - 15 years and I have read of one for whom it was 20. The simple fact is 95% of the NHS have never heard of it and most of our specialists, I've spoken to 7 are at least 10 years behind the rest of the world.

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Kevscar1

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Lotvic I know of lots of trials latest being carried out by Bath is funded by a US Charity. It's to ask sufferers what they deem to be recivery. It's incurable there is no recoovery. The only trials that matter are one that are trying to find a cure for cancer that is 36353 http://clinicaltrials.gov/ct2/results/map?term=Cancer for RSD/CRPS it is 94 http://clinicaltrials.gov/ct2/results/map?term=Reflex+Sympathetic+dystrophy http://clinicaltrials.gov/ct2/results/map?term=Complex+Regional+Pain+Syndrome Not one of those has been carried out in the UK

If you want to find out spend some time on here http://neurotalk.psychcentral.com/forum21.html

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Kevscar1

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FE No one can know why so many sites not just here but across the world have gone. Only those people's families can know if they are one of the 25% of us who according to one US paper in the long term committ suicide.

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Kevscar1

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Heres a challange for you all next time you go to your doctors ask them 3 simple questions.

Do you know what RSD is Reflex Sympathetic Dystrophy Do You know what CRPS is Complex Regional Pain Syndrome. Do you know what the 3 worst Possible treatments are for Sufferers. Ice, Hot and Cold Water Contrast Therapy, Aggressive Physiotherapy.

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Kevscar1

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have any of you been to the doctors and asked. Since taking my campaign onto facebook a lot of people have been getting involved and there are a lot for whom diagnosis has taken many years, worse case so far a woman in Northampton time from onset to diagnosis 27 years.

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