By Jeanne Hambleton © 2009
From the Fibromyalgia FMS Global News Desk
See LATEST NEWS at end of post….
Yes folk are still writing about co-proxamol and asking why they cannot buy it – what has happened to it – and that they need it for their pain. Paul who wrote to me today asked me if the Save Coproxamol Forum has folded? He could not find it and neither can I? Any ideas? Who will start a new one? Who will start an e-petition? Let me know and we will share it for support.
As a quick resume for those who are wondering where this great painkiller has gone – the Government withdrew it on the advice of their medical advisers at the end of 2007. The reason given was some folk had found it worked for suicides.
The sad thing about this whole situation is that thousands of people who are still in pain and suffering, have been deprived ‘at the a stroke of a pen’ of co-proxamol which they had been taking safely for years,
In the last 14 months we, yes me included as my doctor will not prescribe co-proxamol, have finally used up the little stock pile of tablets we had saved knowing the end was nigh. Now folk are back in pain and want the Government to make co-proxamol a controlled drug. What is a controlled drug – I have included an extract below.
Briefly controlled means they have stricter legal controls on their supply to prevent them being obtained illegally.
Also you must show ID when collecting your prescription – a small price to pay.
WITHDRAWAL OF CO-PROXAMOL
At the time of the withdrawal the number of suicides involving co-proxamol was blamed but we were not told what percentage of the total number that represented. So if a larger percentage of those taking their own lives found other ways of solving their problems, this does warrant further discussion.
The reason co-proxamol is not available today to those who need it, although the Government promised co-proxamol could be prescribed on a named person basis to responsible people, is because the drug was taken off the prescribing list leaving it as an ‘illegal’ drug. This meant the family of a patient who overdosed on co-proxamol could take legal action against the prescribing doctor. How many doctors would take that risk? Not many.
While I and many others having every sympathy of those who take their own lives by any means including using co-proxamol, the Government’s failure to make co-proxamol a controlled drug left thousands of people in pain and deprived of ‘an old friend’ – a painkiller they could trust to give them some relief. It also drove a ‘coach and horses’ through all the promises made in Parliament.
I even offered to sign a letter accepting full responsibility for the safe use of co-proxamol tablets if my doctor would just prescribe more magic painkillers for me. He said the letter would not be acceptable in a court of law.
So it has been just over a year since the last ‘legal’ prescriptions for this wonder tablet were written, with the exception of those few doctors courageous enough to trust their patients and disregard the directions about litigation. These are doctors who believed the pain of their patient was a paramount consideration and trusted those who were suffering.
Although the GPs would have us believe these ‘other’ tablets are as good and are better for us, they do not work for me and apparently not for many other people.
Here is the proof – received this week from Shirley Johnson who wrote, “I have not been allowed to have co-proxamol since its ban, and have now used almost all my reserves (allowing myself only to take one when ‘desperate’). I now have four left! No other product has been as good as this.”
Only last week I received an email about the withdrawal of co-proxamol tablets from a lady called Menna. She told me, “My husband is nearly 65 years old and has suffered from chronic pain for many years. He had always found that co-proxamol is the only medicine, which helped him. All other medicines he tried were showing very strong and adverse side effects. It is shame that the doctors, in spite of knowing that my husband does not misuse any drug and does not take alcohol, have stopped prescribing this wonderful life saving medicine.
“Now my husband suffers from nausea, headache, dizziness, constipation and vertigo, because he tries other pain killers. I wish this medicine could be made a Controlled Drug so it would be prescribed by doctors again.”
I am sure you will find it interesting to read at the end of this post exactly what a controlled medicine is – courtesy of the NHS……..
Elizabeth wrote to me at the end of December and said, “I suffer from degenerative disc disease and arthritis and have tried all the alternative pain-killers offered to me after my doctor refused to prescribe co-proxamol. Some were useless, most had unwelcome side effects. I am in constant pain. I have written to the Health Minister in the Scottish Parliament, who came out with the standard response. My doctor sympathises and has advised me to purchase the drug in Spain (I have a property there). On my last visit I enquired about co-proxamol, but they did not have it listed. A visit to the GP resulted in me receiving a drug, which he said was co-proxamol, but it did not look like the pill I was familiar with. Does co-proxamol have a different name in Spain? Meanwhile I have to use a wheelchair, can anyone help?
I am advised in Europe co-proxamol is sometimes called distalgesic. I must have been taking this tablets for so long that I remember having boxes of distalgesic tablets.
Mr. H. Dacey said, “My wife and I were taking co-proxamol over a ten year period, she has arthritis and I have a shrapnel wound. In 2007 when it was announced that it was being withdrawn our doctor stopped prescribing straightaway, despite being reminded about the phased withdrawal. All other medication has proved ineffective with well documented side effects. I doubt very much if our G P would prescribe it under any circumstances, and they have some arrangement which makes it difficult to change GPs.”
June told me, “I admire your efforts and duly signed PEG Cope’s petition, but was disappointed at how few had signed! However, I wonder if all the names signed up are being added? When I went back to the site later in the day, my name had disappeared! I emailed the webmaster, and it miraculously reappeared!! There is a terrible rip-off on the Internet for co-proxamol. I just hope the tablets are pure and not harmful! I am one of the few lucky ones whose GP still prescribes for me. Best wishes, June.”
Lori responding to the co-proxamol withdrawal debate told me, “I have compassion for your desire to help so many people who are afflicted with so much pain. I have the same desire. But I have a very different orientation towards solving the pain problem. I am in the U.S. and just responded to the ‘call’ to use the drug Lyrica by ABCNews4. I will enclose my response and their link for information purposes.
“I am wondering why Jill Atwood is a spokesperson for the pharmaceutical industry, under the guise of factual reporting, summarily dismisses herbal and alternative remedies for fibromyalgia found on the web ‘if they are for profit’. What may I ask are the drug companies in it for? Charity? She concludes – ‘Ask your doctor’ – who is from the very same community that could not find anything wrong.
Suddenly everything is changed because a drug from big business is available? I am not disputing whether this drug helps some people but didn’t she off handedly mention a minor detail aka. ‘side effects’? Also, she failed to mention that this drug is simply treating the symptoms and does not address the root cause of fibromyalgia.
Isn’t this so typical? Find a drug with lots of side effects that treats the symptoms and forget about the source of the problem? I suggest that we all wonder just why are there millions of people suffering so? I would also ask why is it that so many different remedies get some results? What is the common thing they all address – I have looked into it and they all reduce stress (nutrition, massage, exercise etc.)
I know someone who has great success in eliminating fibromyalgia pain for people – but his message will never be heard when reporters brainwash people into believing that the only legitimate way to treat a problem is through the medical community and with drugs.
Unfortunately, the website where the News 4 article and video are shown does not allow any feedback.
Mark Conrad the MD of NutriVital at Petersfield in Hampshire, UK, a clinic for natural medicine, has similar thoughts to Lori. He believes that many drugs treat the pain but not the cause.
He wrote and said, “In today’s world where scientific enquiry is intimately linked up with medicine and health, it is encouraging to note that studies in seemingly disparate fields of science are lending support to the principles that have guided more ancient forms of medicine.
“Quantum physics hints at how intention can have a direct effect on material reality. Endocrinology has more recently spawned PNIE (psycho-neuro-immono-endocrinology), which studies the chemistry of how thought forms effect the physical body through hormone secretions. Neuroscience is growing in awareness of how the structure of our thoughts determines the physical structure of our neuron connections, which in turn determines our future thoughts. Epigenetics teaches us how our genes, far from being hard-wired keys to the fate of generations, are actually switched on and off by conscious thought and environmental influences. Though it may take a long time to filter into the medical school curriculum, modern science gives us plenty of good reason to look beyond drug-based medicine to more holistic views of human health.”
But the fact remains we still need our co-proxamol or a healthy substitute that will have the same effect. Any ideas Mark? I will let you know his comments when he thinks about that.
FIND YOUR MP
Think we must look to the ‘corridors of power’ and ALL write to our MPs if we hope to make changes. If you do not know who he or she is look at the link below and put in your postcode – and as if by magic the name will appear. You can be linked to a message box but I write it out first and then copy and paste it, having read and spell checked it. Or you can investigate and find the email. Most MPs use their
firstname.lastname@example.org. or you can write to the local constituency office.
What is possibly more interesting in this MP and post code exercise is the website reveals how your MPs is voting on different important issues helping you to decide if you want to vote for him or her next time. You can even set up an email alert to have details every time your MP speaks in the House. This is an interesting site.
So we have the name of your MP but it is very likely a u-turn would not be accepted by the Government who would want to save face. However given enough evidence about the pain and suffering we poor fibromites and patients have been through as a direct result of the withdrawal of co-proxamol, they might be persuaded to allow it to become a controlled drug.
Write to your MP with graphic details of your illness, disease, pains, suffering plus the relief you had when taking co-proxamol, and the anguish and stress you are now suffering. A copy to the Readers’ Letters in your local paper encouraging others to write to the MP – give the name and contact– and your MP might be overwhelmed – we hope.
If you are emailing your MP include your address so he knows you are one of his constituents (he will want your vote) and if you send a copy to me (the email address is email@example.com), it would be great. I will publish good comments when I receive them. There is no requirement for the MP to answer letters if you do not live in his constituency, so he needs proof with your address.
Why not send a copy to firstname.lastname@example.org. This lady MP is someone who fought long and hard to save co-proxamol without success. She will welcome your letters, which will allow her to raise the matter again. Use CO-PROXAMOL in the subject of your email.
If you also have fibromyalgia you should point out all the symptoms, the impact and the poor quality of life FMS has had together with the financial burden. Write similar details about whatever illness you have. Describe how much you relied on co-proxamol with no side effects and write about the problems you have with the alternatives.
Ask the MP to raise a question in the House on your behalf and if you have FMS, for the fibromyalgia community totalling two million, mainly women, with many of them relying on co-proxamol for pain relief.
Suggest your own supplies that you had hidden for a rainy day are now depleted and there is no suitable alternative to bring you any pain relief.
What is a controlled drug (medicine)?
Some prescription medicines, such as morphine, pethidine, and methadone are classified as controlled drugs. As these medicines are sometimes misused, they have stricter legal controls on their supply to prevent them being obtained illegally.
If you have been prescribed a controlled drug, there are some additional regulations that govern how the medicine can be supplied to you that are important for you to know.
What are the special regulations?
These include regulations regarding who can prescribe the controlled medicine. Doctors, dentists, and some specially trained nurses, and pharmacists, are allowed to prescribe them. Midwives may also use a limited range of controlled medicines.
There are also legal controls regarding how the prescription is written, and how much of the medicine may be prescribed at a time.
The pharmacist must follow special regulations for the storage of controlled drugs, and must make a record of the prescription in a controlled drugs register. They must also check that the prescription is correctly written before supplying the medicine. The prescription may need to be re-written if it is not legally correct.
Are there any special regulations for patients?
If you are collecting schedule two controlled drugs, such as morphine, or pethidine, from the pharmacy, you will be asked to show proof of your identity – for example, a driving license, or your passport. You will also need to sign the back of your prescription. To collect a schedule three controlled drug, such as flunitrazepam, you will just need to sign the prescription.
You must ensure that all controlled drugs are properly and safely stored at home, and if you carry them around, you must always ensure the safety of others.
It is very important that medicines are never given to anyone other than the person for whom they are intended.
If you are travelling abroad for a period of over three months, you will need to have a personal licence for carrying controlled drugs. It is important to be aware of the following points:
Your doctor must support applications for a licence.
You should allow 10 days for the application to be processed
Controlled drugs licences do not have any legal status.
A personal licence has no legal status outside of the UK, and is intended to help you pass through UK Customs with your controlled drugs. Therefore, it is recommended that you contact the Embassy, High Consulate, or High Commission of the country that you are visiting (or any country that you are travelling through) to see what their local policy is regarding the importation of controlled drugs.
If you are staying in a country outside the UK for more than three months, you should register with a doctor in that country so that you can receive further prescriptions.
Your controlled drugs should be:
carried in the original packaging,
carried in your hand luggage (BAA, or airline regulations, permitting),
carried with a valid personal import/export licence – only applicable if travelling for more than three months (see above), and
carried with a letter from the prescribing doctor confirming the carrier’s name, destination, and drug details (including
For further information and enquiries about personal licences for controlled drugs, you can contact the Home Office, Drugs Branch (telephone number: 020 7035 0486 / 0487), or you can visit their website. See the ‘further information’ section for details.
Countries such as India, Pakistan, and Turkey, have lists of certain medicines that they will not allow in the country. Before travelling, it is therefore worth visiting the UK Foreign and Commonwealth (FCO) website in order to obtain a full list of embassy contact details. You can also refer to the Department of Health’s advice for travellers (see below).
Last reviewed: 28/03/2008 Next review due: 28/09/2009 Courtesy of http://www.direct.gov.uk
Please note the day of the next review – it must be time to start writing to ask if co-proxamol can be included in this list.
About the NHS – The NHS Constitution
Now read this…… about the ownership of the NHS and resources to improve our health
The NHS belongs to us all. The NHS Constitution was published on January 21 2009. It brings together in one place for the first time in the history of the NHS what staff, patients and public can expect from the NHS. It explains that by working together we can make the very best of finite resources to improve our health and wellbeing, to keep mentally and physically well, to get better when we are ill, and when we cannot recover to stay as wellas we can to the end of our lives. The constitution reaffirms that everyone has a role to play in the success of the NHS.
As well as capturing the purpose, principles and values of the NHS, the constitution brings together a number of rights, pledges and responsibilities for staff and patients alike. These rights and responsibilities are the result of extensive discussions and consultations with staff, patients and public and it reflects what matters to them.
Subject to parliamentary approval, all NHS bodies, and private and third-sector providers supplying NHS services, in England will be required by law to take account of the constitution in their decisions and actions. The government will have a legal duty to renew the constitution every 10 years. No government will be able to change the constitution without the full involvement of staff, patients and the public.
Download The NHS Constitution and The Handbook to the NHS Constitution from
For more information and related documents:
So where does that leave us?
I believe the best way to make changes to these documents is by writing to our MPs, asking them to raised questions in the House, which will inevitably get publicity and more support to make co-proxamol a controlled medicine.
Below is an extract from the article I wrote prior to the withdrawal with all the promises made by Caroline Flint MP, Parliamentary Under-Secretary, Department of Health, in the House of Commons. Feel free to quote sections in your letter if you think this will help or look up the original post in the November archives.
26 NOV.2007 CO-PROXAMOL UK WITHDRAWAL DEBATE FMSGLOBALNEWS.WORDPRESS.COM
Parliamentary Under-Secretary, Department of Health, Caroline Flint responds to questions concerning the withdrawal of co-proxamol.
It was reported co-proxamol had been available for some 40 years and many patients who were distressed about the withdrawal, had written expressing this view. It was said co-proxamol would be available on a named basis only at the end of the withdrawal period. The MHRA will ensure GPs are aware of this and this should resolve the supply question.
The Parliamentary Under-Secretary confirmed GPs would still be able to prescribe co-proxamol if there is a clinical need and if no satisfactory alternative could be used. There will however be a much stronger focus on “risk benefit judgment for the particular patient”.
Caroline Flint said the Department of Health would support the decision but would accept there could be a need to allow co-proxamol to be prescribed for some patients where there was a clinical need.Responding to a question on the availability of future supplies, the MP said it would be necessary to decide about the future for the minority who are prescribed co-proxamol as the only acceptable painkiller to bring relief.
She added that the Government is sensitive to the problem and accept that pain management is a complex matter.
In response to a request from the press it was reported the Medicines and Healthcare products Regulatory Agency had said co-proxamol would be available to patients on their “own responsibility” subject to clinical needs. But this report did not coincide with feedback from patients said the MP Anne Begg.
The Parliamentary Under-Secretary hoped Arthritis Care and similar groups would feel reassured by her comments and her “acceptance of the possibility that co-proxamol will continue to be prescribed where there is a clear clinical need because alternative treatments are unsuitable.”
Arthritis Care who have been opposed to the withdrawal of this drug since it was first announced, had been working with some MPs to have the issue raised in Parliament again this year.
The Arthritis Care website believed the named patient basis only was not a satisfactory way to ensure those who need the painkiller would receive it. The charity continues to argue for a review of how best to make co-proxamol available long term.
On their website Arthritis Care have invited those in pain, who had been transferred from co-proxamol to another drug, to contact them with comments in the efficiency of the alternative, to help further this cause. Telephone 0207 380 6547 or contact –
Campaigns@Arthritiscare.org.uk, WalesCampaigns@Arthritiscare.org.uk, or ScotlandCampaigns@Arthritiscare.org.uk.
I have written to Arthritis Care today and I am waiting for their up dated opinion – that I will pass on.
So will you be emailing me at email@example.com with copies of your emails to the MPs and local papers, as well as telling me about your problems in life without co-proxamol? We need all the ammunition we can get. Please start writing. Take care. Jeanne
I have just had a reply back from Arthritis Care that I believe sounds promising. Jane wrote, “Thank you for your message about co-proxamol. You certainly raise topical and important points of concern to many in the arthritis community; I have taken the liberty of forwarding your email to our policy and campaigns unit who work on the co-proxamol issue. Many thanks for contacting me in the first instance about this – as a user-led organisation, we rely on such communication to help us reflect the reality of people’s experience.”
If you want to write to Arthritis Care you can contact the UK office Campaigns team by calling 0207 380 6534 or emailing us at Campaigns@Arthritiscare.org.uk. I would love to hear about it. Thanks.