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Post by Mike Smith on Jun 16, 2009 0:02:07 GMT
Well, I dont know what will happen. This may completely flop but I felt I had to try and do something about the crazy situation surrounding the status of Co-Proxamol in the UK.
Comments welcomed..................
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Post by barbara on Jun 16, 2009 8:55:56 GMT
I wonder if we all write or email our MP's, the more noise and protest we stir up,bringing it to the public attention, the better. Also I did write to the Newcastle Journal and got the article published approx 2005 when the debate started.
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Post by Mike Smith on Jun 16, 2009 10:40:38 GMT
I wonder if we all write or email our MP's, the more noise and protest we stir up,bringing it to the public attention, the better. Also I did write to the Newcastle Journal and got the article published approx 2005 when the debate started. Hi Barbara, Thanks for being the first person to sign up to the site. As I said on D4D Im not sure how much good this site will do, but having a URL that is the name of the drug should at least draw attention to the issue. Do you have a link for the article for the Journal, is it on the net? If so, please feel free to post it here. Anyway, welcome and thanks for taking the time to register.
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jenny
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Post by jenny on Jun 16, 2009 13:30:20 GMT
Hello.
Whomever has set this site up - thank you. Its the first positive step I have seen taken for a while. It will only work if people come here and make themselves heard. I am at my wits end. Im in agony and my (please excuse my language Mike) bastard doctor is giving me the usual bs other people seem to get. Suicide,overdose,dependancy etc etc. He tells me to take paracetamol instead. like that makes any difference at all. so, im forced to follow others and both pay AND risk large amounts of cash on the black market.
damn the mrha, mhra whatever their stupid name is. Im in agony, and co-proxamol were the only thing that came close to helping me whilst allowing me to function. suicide? if this pain keeps up i may just consider it. i wonder how many other people feel the same way. how ironic can you get.
Mike, thanks for sticking your head above the parapit. god bless you and good lluck with the site.
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Post by russmclean on Jun 16, 2009 14:06:42 GMT
I wonder if we all write or email our MP's, the more noise and protest we stir up,bringing it to the public attention, the better. Also I did write to the Newcastle Journal and got the article published approx 2005 when the debate started. Hi Barbara, Good suggestion. It has already been done, and then some with style !..... www.mhra.gov.uk/home/groups/es-foi/documents/foidisclosure/con049136.pdfThe thing is that the MHRA don't listen to government (the MHRA are directly funded by drug companies - conflict of interest or what!). All the MP's that were written to did part of their job and held no fewer than 3 debates proposed by the disabled MP Anne Begg... www.theyworkforyou.com/debates/?id=2005-07-13a.936.0www.theyworkforyou.com/whall/?id=2007-01-17b.340.0 (can't find Hansard for the third one - will post this later) So if the MHRA are so thick skinned they can ignore the Soveriegn UK Parliament, the only option is to put the MHRA under sufficient examination that they are put out of business. A couple of months ago we started sending the MHRA the undernoted letter. The reams to each reply were useful for getting the issue aired on television by the excellent BBC reporter Julia George.... news.bbc.co.uk/1/hi/health/7540344.stm Hope this helps put the story so far. Also a BIG THANKYOU to Mike Smith. Excellent effort in getting this coproxamol forum set up. Very best regards, Russ McLean
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Post by russmclean on Jun 16, 2009 14:12:50 GMT
I wonder if we all write or email our MP's, the more noise and protest we stir up,bringing it to the public attention, the better. Also I did write to the Newcastle Journal and got the article published approx 2005 when the debate started. Barbara, this was the one of the letters we used as part of a campaign to get the MHRA to publish all their coproxamol complaint letters online as per the weblink in my last post.... QUOTE...... To: Sir Alasdair Breckenridge The Medical Healthcare Regulations Office Market Towers 1 Nine Elms Lane London SW8 5NQ Dear Sir, Freedom of Information Request: - Analgesic: Coproxamol 1. Under the freedom of information laws, please can you supply me with a copy of each letter, fax, or email that the MHRA have received relating to the withdrawal of the painkiller coproxamol for the period:- 1st January 2006 to 31st December 2008 (dates inclusive and appropriately redacted). 2. The medical defence union representing doctors (internet link below) quotes the MHRA admitting: "We (the MHRA) recognise that there is a small group of patients who are likely to find it very difficult to change from coproxamol or where alternatives appear not to be effective or suitable. For these patients, following cancellation of the licences at the end of 2007 there is provision for the supply of unlicensed coproxamol, the responsibility falling on the Prescriber". Please confirm to me that your organisation has in fact stated this. 3. The Medical Defence Union has stated: "In light of the medico-legal risks attendant with the MHRA decision the MODUS (medical defence union) is advising members to cease all prescribing of coproxamol now or as soon as practical and consult with long term users on alternative analgesics". Following this statement, the Coproxamol Campaign wrote to 203 General Practitioners, and in spite of being offered a legal disclaimer, not one doctor was prepared to prescribe coproxamol because of the medico-legal risk in which the MHRA Named Patient system had placed them. 4. Given the evident contradiction, indeed conflict, between paragraphs 2 and 3 above, and the emerging fact that many patients have been left to live and die in untreated pain. Patently there has been a catastrophic collapse of the MHRA Named Patient system of prescribing coproxamol to patients who have found all alternate analgesia to be either too strong, too weak or with intolerable side effects. What do you, Sir Alasdair Breckenridge, propose to do to rectify this inhumane situation? Yours faithfully, Name:_______________________ Address:_______________________ _______________________ _______________________ _______________________ Date:_______________________ Internet link www.mddus.com/mddus/news-and-events/january-08/risk-alert-co-proxamol-withdrawal.aspx
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Post by Mike Smith on Jun 16, 2009 14:38:11 GMT
Hi Russ,
Glad to see you managed to register OK. I think I identified what the problem was.
It only cost a few pounds to set this site up and if it can, in any way, help change this crazy situation then it will be a few pounds well spent.
I had a look at the BBC article you posted and saw links there to ARC, BPS and AC organisations. Do you think its worth emailing them a link to the site. Would they put a link on their sites I wonder? Its clear that you have a much better understanding of the issues here than I do, but one thing I do know - its just WRONG that people who need this drug have to resort to the foreign black market to get it. Not only has the MHRA forced people to endure unnecessary pain, but they have also forced them onto the black market.
I am horrified to see that the MHRA can effectively bypass parliament. I just thought it was the USA where drug companies had such power. I was clearly wrong!
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Post by barbara on Jun 16, 2009 15:04:38 GMT
I shall cut and paste what is left of quite a long article that was published some time ago. There was also a photo, now disappeared.
Painkiller is my only remedy anthony hendon, Evening Chronicle, 28 July 2004
Painkiller is my only remedy I SUFFER from painful migraine which can make me very ill for three days. I have been known to cry with the pain, faint and be sick. Co-proxamol is the one and only drug that gives me relief from this. We go abroad a lot and just to know I can carry on as usual and stop a migraine in its tracks, when we are staying at hotels and doing car journeys, is just a huge relief. There are times I haven't been able to walk, such is the pain, and if I had to disembark from a ship or ferry I just don’t know what would happen without stopping the migraine. I only need to swallow one pill and this means I can get on with my life. I have no addictive tendencies and no wish to leave the planet. As some will always find a way to overdose why should the rest of us be punished? The reassurance that if a crippling migraine strikes, I have a cure in Co-proxamol is a huge relief to me.
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poppy
New Member
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Post by poppy on Jun 16, 2009 15:50:35 GMT
Well done Mike. Hopefully lots of people will find this website.
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poppy
New Member
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Post by poppy on Jun 16, 2009 15:59:33 GMT
Mike after checking out Precribe4U the other day I got as far as the payment option and when I discovered you needed a Visa card which I don't have I abandoned the order. A few days later I got an email from them and explained why and just got an email today from Claire saying they are sending me a couple of boxes COD because I'm a reliable customer.
Well at least I have a bit of hope to keep me going a little longer eh?
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Post by Mike Smith on Jun 16, 2009 18:56:29 GMT
Hi Poppy, welcome to the forum. Im pleased you got some help. Hope the tablets turn up soon 4 u.
Lets hope we can do something about the whole situation in the hope that one day your doctor will simply prescribe them for you.
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Post by russmclean on Jun 16, 2009 19:39:58 GMT
Mike after checking out Precribe4U the other day I got as far as the payment option and when I discovered you needed a Visa card which I don't have I abandoned the order. A few days later I got an email from them and explained why and just got an email today from Claire saying they are sending me a couple of boxes COD because I'm a reliable customer. Well at least I have a bit of hope to keep me going a little longer eh? Hi Poppy, There is usually a cure for most things. My normal bank Maestro card wouldn't work so I got one of these prepaid efforts. You load it up with say £100 prepaid credit and then give the details to across. It also ensures you are limited in exposure if you worry about scams (though Claire prescribe4u seem to be making a good effort to help out). There are no credit checks and the cards are relatively straight forward to obtain. You can get them in Mastercard or Visa. Be sure to go for the Visa one. Hope this helps, Best regards, Russ
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Post by russmclean on Jun 16, 2009 19:50:25 GMT
Hi Russ, Glad to see you managed to register OK. I think I identified what the problem was. It only cost a few pounds to set this site up and if it can, in any way, help change this crazy situation then it will be a few pounds well spent. I had a look at the BBC article you posted and saw links there to ARC, BPS and AC organisations. Do you think its worth emailing them a link to the site. Would they put a link on their sites I wonder? Its clear that you have a much better understanding of the issues here than I do, but one thing I do know - its just WRONG that people who need this drug have to resort to the foreign black market to get it. Not only has the MHRA forced people to endure unnecessary pain, but they have also forced them onto the black market. I am horrified to see that the MHRA can effectively bypass parliament. I just thought it was the USA where drug companies had such power. I was clearly wrong! Hi Mike, Many thanks for that. Really well done on setting the site up. Just a quick note to say there is hope at getting the MHRA "Named Patient" paradox fixed so doctors, insurers and unions can enable coproxamol to be properly prescribed by clinicians without placing each of our GP's in medical-legal harms way. Have spoken with the lawyers, and also some friends with direct experience of the MHRA and am to be introduced to a QC who specialises in this sort of medico-leagle mess. It may take time, but without being overly pushy, I have on my CV the demise of one government department many times bigger than the MHRA. The EU eventually took all their assets off of them and shut them down. They had to re-open, otherwise half of Scotland would have closed down, but it proved that persistence pays off. There is still a vestage of hope that the UK Government will retire the Medical Health Regulator Breckenridge and insist that Parliament's request to reclassify coproxamol as a "Calss A" drug will be enforced. Otherwise it is off to the European Court of Human Rights. Cheers, Russ.
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Post by Mike Smith on Jun 16, 2009 20:06:57 GMT
Hi Russ. Thanks for that. What we need now is people. Alot of people. I have hoped by taking the url www.co-proxamol.com people just browsing for info about coprox will come accross it. We couldnt really have a better web address than the drug name itself!! I think what might be useful as a resource would be for me to set up another sub board (people would see it when they come to this forum but would not be able to post on it) for links to all the places you feel would be of interest for visitors to our forum. Do you think that would be useful? Russ, Thanks for helping out with the site, its really good of you and I hope we can do some good.
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Post by barbara on Jun 16, 2009 21:57:53 GMT
I wondered about the Human Rights Angle, it seems to be used for some dubious claims, surely there is room for a genuine complaint of human suffering. Perhaps ITV's This morning magazine programme would do an interview. They often have Dr Chris on discussing topical issues. Russ sounds very articulate.
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