Minister calls for pain indicators in QOF (Quality

From the FMS Global News Desk of Jeanne Hambleton (UK)

Courtesy of PulseToday.com

By Nigel Praities -21 Apr 09

A Government minister has invited applications for new pain management indicators for the QOF in a parliamentary debate held yesterday.

Health minster Ann Keen said the inclusion of pain in the QOF was a ‘key issue’ and that she hoped organisations would submit proposed indicators for the next review.

The debate was proposed by Anne Begg MP, the chair of the recently formed All-Party Parliamentary Group on Chronic Pain, who said pain should be considered as a ‘vital sign’ for PCTs and incentivised through the QOF.

‘The inclusion of pain assessment in the QOF would strongly encourage health professionals to be proactive and to ask a patient about their pain, treat it promptly and reassess it to ensure that the treatment given is effective, rather than expecting the patient to raise it first,’ she said.

Ms Begg also criticised the complete withdrawal of co-proxamol by the MHRA, and quoted figures revealed in Pulse earlier this year that showed an increase in morphine and tramadol prescriptions as a result of the withdrawal.

In response, Ann Keen said Ms Begg had made a ‘persuasive and eloquent case’ for pain indicators in the QOF and she hoped pressure groups, such as the Chronic Pain Policy Coalition – would press for its inclusion.

‘I understand that the next opportunity to submit suggestions for new indicators to NICE will be this summer. I hope that the chronic pain policy coalition will take the opportunity to suggest specific indicators at that stage,’ she said.

A spokesperson from the Chronic Pain Policy Coalition confirmed it would submit a proposal for new QOF indicators for the routine management and assessment of pain to NICE later this year.

‘Given the important role GPs have to play in the early identification, diagnosis and management of patients with pain, we strongly believe that this is an area in which greater incentivisation through inclusion within the QOF indicators would have a considerable positive impact,’ he said.

(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122478&c=2&cid=pain042209#)

IN THE HOUSE OF COMMONS 20 April 09 (Hansard source/TheyWorkForYou.com)

In the House of Commons on April 20 MP Anne Begg spoke about the Pain Management Services (England) as reported by Hansard and TheyWorkForYou.com

She said, “In the United Kingdom, 7.8 million people live with pain, day in and day out; that is the equivalent of about one in seven people in every single parliamentary constituency. I have asked for this debate in order to draw attention both to their problems and, more importantly, to some solutions that would not only improve the quality of life of so many of our constituents, but also reduce public expenditure on health, social care and incapacity benefits.

“If anyone is wondering why I, as a Scottish MP, am raising the issue of pain management services in England when health is a devolved issue, it is because I am the chairman of the recently set up all-party group on chronic pain. I suppose I should also declare an interest: I am one of the 7.8 million people in the UK who live with chronic pain.

“There could not be a better opportunity to consider the problem and suggest solutions. People in pain and the health professionals helping them have been pushing at a closed door for many years now. They have argued for early recognition of the needs of people in pain, early access to expert advice and treatment, and referral to a specialist pain clinic when necessary. That door was closed until recently; suddenly, it looks as though it is opening, and I am grateful to the chief medical officer for beginning that process.

MAJOR INITIATIVE

“His latest annual report, only just published, includes a chapter called “Pain: breaking through the barrier”. Sir Liam Donaldson looks at the issue of people living with pain in a sensitive and comprehensive way, and concludes with this statement:’A major initiative to widen access to high-quality pain services would improve the lives of millions of people.’ “

Ms Begg also said, “The evidence suggests that although pain services do exist in most secondary care NHS trusts, they are patchy, and variable in their resources and in the services that they provide. Crucially, the CMO’s report makes this point: each year, more than 5 million people in the United Kingdom develop chronic pain, but only two thirds will recover. Clearly, much more needs to be done to improve outcomes for patients. He reminds us that pain affects 7.8 million people, and that more than a third of households have someone in pain at any given time. Those figures are rising. Indeed, recent surveys suggest that chronic pain is more common now than it was 40 years ago.
Pain is becoming more common, but the effect that it has on individual lives is immense.

“The CMO highlights the fact that pain has a major impact on people’s lives, causing sleeplessness and depression, and interfering with normal physical and social functioning. That often leads to unemployment. He points out how it affects all age groups. Perhaps most worryingly, he states that 8 per cent. of children experience severe pain, that back pain alone costs the economy £12.3 billion per year and that early intervention may prevent pain from becoming persistent. In fact, it has been shown that the cost of chronic pain is greater than that of heart disease or diabetes.

“Looking at the limited number of specialist pain clinics, the CMO points out that systems and infrastructure do not meet need or demand, and that better co-ordination of services, and services designed around patients’ needs, are essential. Pain needs to be considered in its own right, because it is often the pain that dominates the patient’s life, not the illness or condition that causes the pain.

As one patient has said: ‘At first I presumed the pain would eventually go away and I would get better. I didn’t expect to develop chronic pain, or that it would stop me working and lead me to consider suicide. I just want my life back.’

Another said: ‘I am in constant and debilitating pain, often unable to do even the most simple activity such as making myself a cup of tea. I have daily bad headaches, and have no quality of life. It is making me very depressed and life is hell.’

Clearly, we have a duty to ensure that the individual has access to the right treatment as early as possible. That treatment has to come from a properly trained professional, and a multidisciplinary team if needed.

“I was surprised by the amount of interest that this debate has generated. I have been contacted by a number of organisations wishing me to raise their concerns. Age Concern and Help the Aged have particular issues relating to the elderly.

AGEING PROCESS

“They say that pain is not a normal part of the ageing process, and we should not accept it as such. We should challenge discrimination and ageist attitudes with regard to pain in older people. They say that constant pain can lead to a loss of dignity. Some 90 per cent. of calls to Arthritis Care’s helpline concern pain, most of them from people in severe pain. In the UK, pain crises account for 60 to 80 per cent. of emergency presentations in hospital admissions for sickle cell disorder.

CO-PROXAMOL WITHDRAWAL AND NAMED PATIENTS

“This is not the first time I have had an Adjournment debate on the issue of pain. Ever since the Government first indicated that they intended to withdraw the analgesic co-proxamol, I have been trying to persuade Ministers that it should not be completely withdrawn as a small group of people still has not been able to find an alternative and certainly not anything so effective. These are all people who suffer chronic pain, who are saying that only co-proxamol works not because they want to be awkward but because it allows them to carry on with their life.

“One person in that position has said: ‘With co-proxamol I had pain but it was bearable, now I can walk only a few steps before being forced to rest; before I managed to tend my flower garden, now I can only sit and feel depressed with pain and frustration’.

“I have several constituents who depended on co-proxamol but cannot now get access to it. While the Government say that co-proxamol is available on a named patient basis, that is of cold comfort to those whose GPs are refusing to prescribe the drug at all. GPs are not comfortable prescribing off licence as they do not always feel that they have the specialist knowledge. But consultants at pain clinics do.

“The main reason the Government gave for withdrawing co-proxamol was the suicide statistics. As it is now extremely difficult for even those who need the drug to access it, the incidence of suicide attributed to co-proxamol is now tiny. However, the use of stronger pain relief and particularly opiates has grown. A recent Pulse article says that there has been a 44 per cent. rise in prescriptions for morphine and a 61 per cent. rise in tramadol prescriptions. That cannot be good pain management, so I ask the Minister to look at this issue again.

“I have not, however, sought this debate to lay blame at the Government’s door on this matter: rather, I hope to encourage the Minister to consider the recommendations laid out in the chief medical officer’s report and to give due regard to their feasibility. I do not have time to discuss them all, but I do want to take this opportunity to bring some to the Minister’s attention.

PAIN TRAINING SHOULD BE EXTENDED

“First, training on chronic pain should be included in the curriculum for all health professionals who deal with patients. However, it is vital that this core training is extended to all health professionals, and in particular to GPs who, at the very least, should have pain training as part of their standard undergraduate education.

“Secondly, consideration should be given to the inclusion of the assessment of pain and its associated disability in the quality and outcomes framework—QOF—in primary care. That is an extremely important point, because the inclusion of pain assessment in the QOF would strongly encourage health professionals to be proactive and to ask a patient about their pain, treat it promptly and reassess it to ensure that the treatment given is effective, rather than expecting the patient to raise it first.

“A recent report on osteoarthritis found that 50 per cent. of people said that they would need to be in frequently unbearable pain before considering seeing their GP—clearly this is a significant barrier.

FIFTH VITAL SIGN – PAIN SCORE

“Another recommendation was that a pain score should become part of the vital signs monitored routinely in hospital. Indeed, the Chronic Pain Policy Coalition has been campaigning for some time now for pain to be adopted as the fifth vital sign. If implemented, this recommendation would ensure that health professionals become proactive in asking their patients about pain. People would recover faster and reduce the burden of care on others.

MODEL PAIN SERVICE OF PATHWAYS OF CARE

“The final recommendation I want to highlight relates to the development by experts of a model pain service of pathways of care with clear standards. The work could build on the excellent 18-week cross specialty chronic pain pathway developed by patients and clinicians that has been supported by the Department of Health.

“It is an important step forward and should be extended to ensure that all patients are offered comprehensive treatment options. That would improve rapid access and reduce the current variability in treatment that patients receive. Patients need to be confident that they can be offered effective options wherever they live.

“Commitments have already been made both in Scotland with the ‘Getting to GRIPS with Chronic Pain’ report and in Wales under the ‘Designed for Life’ programme to assess and improve the services available for patients with chronic pain. I hope I have shown the Minister that there are patients, third sector organisations such as Arthritis Care and health professionals in England anxious to get hold of these recommendations and take them forward. They will need encouragement and flexibility in the way in which integrated services are funded and in how outcomes are measured.

PAIN CHAMPION DEMANDED

“Above all, people in pain need a champion. Tsars such as Mike Richards for cancer and Roger Boyle for cardiology have shown how such champions can make a difference. Pain affects cancer patients and heart patients as well as millions of others with back pain, arthritis, pelvic pain and a multiplicity of conditions. Surely the numbers involved and the importance of early intervention demand a pain champion.

“I know that the concerns I have raised in this debate are shared by a number of my hon. Friends and indeed by many of their constituents. I thank the Minister for hearing me out, and I hope that she can give consideration to the points I have raised.

REPLY

Replying Ann Keen (Parliamentary Under-Secretary (Health Services), Department of Health; (Hansard source) congratulated Miss Begg on securing this Adjournment debate on a “most important topic, which Professor Sir Liam Donaldson chose to highlight recently in the 150th report of the chief medical officer.”

She said, “The report of the chief medical officer is an independent report to Government on aspects of the nation’s health and, as such, draws attention to a number of different major health challenges. In his annual report for 2008, the chief medical officer called for a major initiative to widen access to high-quality pain services to improve the lives of millions.

NATIONAL PAIN DATABASE

“I am delighted to inform my hon. Friend and the House that I received a letter from Professor Black, the chair of the advisory group, just before the Easter recess, and it recommended that the national pain database, run jointly by the Royal College of Anaesthetists and the British Pain Society, should be funded as part of the national clinical audit programme.”

EDITOR’S NOTE: On behalf of the fibromyalgia community living with chronic pain, numbering around two million, mainly women, me included, and those of us who survived thanks to co-proxamol, I would like to thank Anne Begg MP publicly for speaking out on our behalf.

Had I known Miss Begg was to initiate this debate I would, of course, have asked her to include fibromyalgia in her chronic pain list. Hopefully she will read this somewhere, sometime, and might think kindly of us when next raising chronic pain and co-proxamol.

For many of us co-proxamol, when it was £2.79 for 100 tablets, was an inexpensive painkiller. Had we known this it would have been cheaper than the prescription charge if we had been able to buy it. This was before the Government got involved. It was a life saver for those with fibromyalgia, and many others. In those days we had some relief…now it is pain 24/7 thanks those who meddled against the wishes of many doctors, consultants, a number of MPs and the patients. They did not give a jot about us at the ‘coal face’ living with pain for the rest of the life. Yes I have tried the alternatives and they disagreed with me and my IBS and gastric problems. They should have tightened the rules allowing those who really need it to be able to get it, prescribed without litigation problems.

Today albeit your GP knows you are in pain and you should be a named patient, after years of safely taking co-proxamol without a hint of any problems, he will not prescribe it due to the risk of litigation involved with prescribing an unlicensed drug. Mr. B. sitting comfy in his armchair (free of pain) with all found, at No.10, your Government has a lot to answer for…….. the loss of co-proxamol is most certainly one of them.

Letters to Anne Begg at begga@parliament.uk would I am sure be much appreciated by her especially if you make reference to her debate in the House of Common on 20 April 200 and give her more ammunition about your problems with co-proxamol and fibromyalgia. Maybe you will send a copy to me please -fmsglobalnews@me.com. Thanks.

For the background to the Co-proxamol debate and MP Anne Begg.
SEE: http://fmsglobalnews.wordpress.com/2009/03/13/co-proxamol-a-controlled-drug/

http://fmsglobalnews.wordpress.com/2009/03/24/prescriptions-for-opioids-jump-following-co-proxamol-ban/

http://jeannehambleton77.wordpress.com/2008/01/03/no-u-turn-on-co-proxamol-withdrawal/

http://jeannehambleton77.wordpress.com/2007/12/05/co-proxamol-bungled-withdrawal-is-a-farce/

http://jeannehambleton77.wordpress.com/2007/11/26/co-proxamol-withdrawal-debate/

SEE: http://jeannehambleton77.wordpress.com for more health stories

Prescriptions for opioids jump following co-proxamol ban

From the FMS Global News Desk of Jeanne Hambleton

Courtesy PulseToday.co.uk.

By Lilian Anekwe – 17 March 2009

Opioid prescriptions have jumped during the withdrawal of co-proxamol, with GPs apparently struggling to find adequate means of pain control for some patients.

Prescriptions for morphine have risen by more than 40% and those for tramadol by two-thirds since co-proxamol use was first reduced in anticipation of the drug’s withdrawal.

An analysis for the Medicines and Healthcare Products Regulatory Agency, obtained by Pulse under the Freedom of Information Act, reveals prescriptions for co-proxamol plummeted from 835 million in 2004 – the year prior to legislation on its withdrawal – to 121 million in 2007.

But over the same period, opiod prescriptions overall rose by 40%. Prescriptions for morphine rose by 44%, from 757,000 in 2004 to 1,093,000 in 2007, and tramadol prescriptions increased by 61%, from 3,130,000 to 5,036,000.

Co-proxamol was removed from the British National Formulary on 1 January last year, but the NHS Information Centre analysis shows GPs continued to prescribe co-proxamol to approximately 150,000 patients in England on a named-patient basis.

The MHRA downplayed the impact of the withdrawal and said the ageing population was to blame for increasing demand for analgesics. But the agency’s pharmacovigilance group concluded: ‘Opioids, especially tramadol, have followed an increasing trend and some patients may have been switched to this class of analgesic.’

Dr Adam Bajkowski, a GP in Wigan and president of the primary care rheumatology society, said the analysis suggested the MHRA’s argument that full-strength paracetamol was as effective as co-proxamol was flawed: ‘If GPs are having to switch patients to a stronger opioid, then it suggests the MHRA’s reasoning wasn’t really true.’

READERS’ COMMENTS
MHRA | 20 Mar 09
Your report on analgesic prescribing following the withdrawal of co-proxamol presented a distorted picture of the relevant information.

The withdrawal of co-proxamol in the UK has saved approximately 300 lives per year and there is no evidence that the death rate due to other analgesics is increasing. Prior to the withdrawal of co-proxamol, the MHRA issued guidance on pain management from the former Committee on Safety of Medicines (now known as the Commission on Human Medicines) to help doctors find the best options for individual patients, setting out a graduated range of possible therapeutic interventions.

Opioid prescriptions have not “jumped” during the three-year phased withdrawal of co-proxamol, as suggested in the article, and we do not have evidence that patients are being switched from co-proxamol to other opioids. Even though opioid prescriptions have increased steadily over the last 5 years they still make up a very small proportion of the overall prescriptions for painkillers.

There were increases in the numbers of prescriptions of paracetamol and of co-codamol around the time of the co-proxamol withdrawal. These increases were sufficiently large to suggest that patients may have been switched from co-proxamol. A research project to look at the analgesics that patients have been switched to will be started shortly.

Pulse, CMP Medica. All rights reserved.
(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122142&c=2)

EDITOR’S NOTE As someone who suffers with pain 24/7 from fibromyalgia, I managed very nicely with co-proxamol and some pain killing gel for the aches and pains until the withdrawal on December 31 2007. We were promised that those who really could not manage without it would be prescribed on a named patient basis. The Government and the Ministers failed to mention the under handed action of making co-proxamol an ‘illegal’ drug.

After I fought my own personal battle to reverse the withdrawal and tried to become a named patient, all unsuccessfully, I tried the alternatives which aggravated the old IBS. So I am left with nothing but pain. My GP will not prescribe co-proxamol for fear of litigation and I do not want to fill my body with drugs where the side effects for me are unbearable.

Why was co-proxamol not listed as a controlled drug. Those in need could then have received the pain relief they need so badly.

I imagine with the increase in these alternative medications mentioned in the article above, the cost of pain treatments has soared against what was a relatively cheap pain killer – £2.79 for 100 tablets – before the Government got involved. Is it any wonder the NHS is always short of funds and this is just a small example of failure to see the whole picture.

Why did GPs stop prescribing co-proxamol read this article from Pulse just after the withdrawal on 17 January 2008.

PCTs threaten GPs over co-proxamol

By Nigel Praities – 17 Jan 2008

PCTs are piling pressure on GPs to switch patients from co-proxamol to alternative medication, after the reimbursement price of the drug soared with loss of its licence.

In December 2007, co-proxamol was listed as Category M medicine with a reimbursement price of £2.79 for 100 tablets. From January 2008 it has been available as an unlicensed drug, but has been changed to Category C with a reimbursement price of £20.36 for 100 tablets – a sevenfold increase in price.

The price hike has galvanised trusts into action, with several already having contacted GPs to urge them to prescribe alternative analgesics, just weeks into the new year.

West Essex, Islington and West Hertfordshire PCTs are all planning, or have already, written to GPs about the price increase.

Norfolk PCT is planning a series of meetings and individual visits to reinforce the status and cost of co-proxamol to GPs. Other PCTs have indicated to Pulse that they are monitoring the situation in their area before taking action.

Dr Iain Gilchrist, a GP in Essex and treasurer of the Primary Care Rheumatology Society, who has taken all his patients on co-proxamol off the drug, said the price increase would put even more pressure on those GPs still prescribing it.

‘No doubt with GPs who still have patients on co-proxamol, the prescribing advisors will be wanting to have a little word in their ear. There is nothing like a price hike to concentrate the mind,’ Dr Gilchrist said.

Dr Gilchrist received an email in early January from a prescribing adviser at West Essex PCT, which said the price of co-proxamol had ‘rocketed’ and is a ‘very expensive option, as well as being unlicensed.’

PCTs are worried about the cost implications as many practices have struggled to find alternatives for many of their patients on the drug. A Pulse investigation in December revealed as many as 60,000 patients may still be on co-proxamol and 60% of practices reported that a hard core of their patients continued to take it.

The latest pressure from PCTs adds to the medico-legal headache surrounding co-proxamol. Patients can still be prescribed the drug on a named-patient basis, although GPs assume legal liability if they continue to prescribe the unlicensed drug.

TROUBLED WITHDRAWAL OF CO-PROXAMOL

Jan 2005 – MHRA announces withdrawal of co-proxamol
Oct 2006 – A Pulse survey reveals 70% of GPs demand the MHRA review its decision
Jan 2007 – MPs demand u-turn on withdrawal at special House of Commons debate
Oct 2007 – 60,000 patients remain on co-proxamol
Dec 2007 – Final withdrawal of co-proxamol
Jan 2008 – PCTs panic as price of co-proxamol soars

(http://www.pulsetoday.co.uk/story.asp?storycode=4116799)

On 21 September 2006

One GP asked, “Is it time for a rethink on the co-proxamol ban?”

Co-proxamol is so accessible because it is the most useful analgesic in general practice and so a lot has been prescribed.

The academics who recommended banning it have made a kneejerk reaction without listening to those of us facing the realities at the coalface of medicine. All the alternatives, including paracetemol itself, are more toxic than co- proxamol. Tablet for tablet, they all have more paracetemol than co-proxamol. Dextropropoxyphene is not toxic to the liver. Paracetemol, co- codamol and co-dydramol are all readily available, more toxic and more expensive than co-proxamol, tramadol and so on.

Prescriptions will increase. More bleeds, more deaths and more drug interactions will occur. There will be more prescriptions for laxatives, more bowel obstructions, more hospitalisations. Drug costs will go up substantially and more successful suicides will occur.

I plead – think again. What do other GPs think?

(http://www.pulsetoday.co.uk/story.asp?storycode=4010484)

EDITOR’S NOTE: Just this week a member of my own family haas been hospitalised for 36 hours. The hospital doctors blamed the medication (pain killers) prescribed for broken bones. He was lucky to be diagnosed quickly or the complication might have been fatal. Afraid to take more medication he is living with unbearable pain. If he had been taking co-proxamol I doubt this would have happened. I literally ‘lived’ on co-proxamol for almost five months when I broke my wrist and my pelvic bone in three places – without any side effects.

So what do you think? Are you ready to press your MP to ask questions in the House to have co-proxamol licensed as a controlled drug?

CO-PROXAMOL – A CONTROLLED DRUG?

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.

ALL GONE

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.”

YOUR VIEWS

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.

http://www.abc4.com/news/local/story.aspx?content_id=a9c6a76a-8d13-4d05-a170-ae9e4d651468

NATURAL MEDICINE

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

surnameinitial@parliament.gov. 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.

http://www.theyworkforyou.com/

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 fmsglobalnews@mac.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 begga@parliament.uk. 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)?

(http://www.nhs.uk/chq/Pages/1391.aspx?CategoryID=73&SubCategoryID=101)

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.

Travelling abroad

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
amounts).

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

http://www.nhs.uk/aboutNHS/constitution/Pages/Constitution.aspx

For more information and related documents:


http://www.dh.gov.uk/nhsconstitution

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 fmsglobalnews@mac.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

LATEST NEWS

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.