Category Archives: All-Party Parliamentary Group on Chronic Pain

International Fibromyalgia Awareness Day 12th May 2009

From FMS Global News Desk of Jeanne Hambleton (UK)

In the wake of the historic first ever debate about fibromyalgia in Parliament (Westminster Hall) last week on May 5, the Fibromyalgia Association UK, (FMA UK) praised for its work in helping sufferers, has issued a press release.

The Chairman of the Trustees of FMA UK Ms Pam Stewart said, “A year has passed and what has changed?”


EUROPEAN NETWORKS OF FIBROMYALGIA ASSOCIATIONS & NICE REJECTION

In Brussels, the Written Declaration on Fibromyalgia won a majority of votes. This asked all member states to recognise fibromyalgia and ensure diagnosis and treatment is available. It also stated that research funding should be awarded for fibromyalgia.

“It is likely to be some time before we see the results of this as it is a slow process,” said the Chairman.

“In the UK, the recommendation for guidelines for the treatment of fibromyalgia were not considered to be a priority by the National Institute of Clinical Excellence (NICE). This rejection by NICE which is independent from the government is a blow for UK fibromyalgia sufferers,” said Pam Stewart.

CHIEF MEDICAL OFFICER’S ANNUAL REPORT

The annual report from the Government’s Chief Medical Officer Sir Liam Donaldson, which included a whole section on pain and especially chronic pain, gave hope that at least this area of fibromyalgia might be given some attention but it is only part of the range of symptoms and cannot be treated in isolation.

FIBROMYALGIA DEBATE IN THE HOUSE

“We were delighted to have a debate with Ann Keen, Parliamentary Under Secretary of State in the Department of Health, so that questions about the future of fibromyalgia diagnosis and treatment could be assured. This debate was secured by Rob Wilson MP for Reading East and Chair of the All Party Parliamentary Group on Fibromyalgia (APPG).

“Sadly it seemed that complacency with the initiatives already in place means we still have a fight on our hands. Since the Musculoskeletal Service Framework was put in place in 2006, we have not heard that treatment options have improved and we still hear of people being told to go away and live with it.

“We have been told that in one hospital, a mention of fibromyalgia will bar the patient access to further treatment from pain specialists, physiotherapy or other recommended treatment options!

” When asked about training for medical professionals, which Sir Liam Donaldson had mentioned in his report, we were informed that we would have to take this up with the professional bodies involved in accrediting training even though deficiencies in knowledge have been acknowledged,” she said.


DO DOCTORS USE THIS NHS SITE?

However, the new website http://www.NHSevidence.uk was mentioned by the Under Secretary. When fibromyalgia is searched for, this has the European League Against Rheumatism (EULAR) guidelines that were sent to NICE as a beginning for official UK clinical guidance. This is encouraging if medical professionals use this service. This advocates a multidisciplinary approach for the treatment of fibromyalgia. There are some centres around the country that use this but those with fibromyalgia need all PCTs to have the ability to refer patients with fibromyalgia to a multi-disciplinary team of medical professionals for appropriate treatment.

“It is unacceptable that these specialist clinics are not available on the NHS Choose and Book system thereby denying easy access to sufferers. We hope this debate will have raised the profile of fibromyalgia but it has highlighted that there is still much more to do. People in constant pain should have the right to effective treatment. How can between 1.7 and 2.8 million people living with such a poor quality of life be treated so badly?

..end..

EDITOR’S NOTE: As someone with fibromyalgia I was very pleased to hear Rob Wilson MP had secured this debate. May I also publicly thank the handful of MPs who were in the Chamber to support this plea for support for the neglected people with fibromyalgia. I guess like many of the 2.7 million people diagnosed with fibromyalgia in the UK, I felt the response from the Minister, Department of Health, was a ‘white wash’. As a health professional herself I did believe she wanted to help but it appeared her ‘hands were tied’ by red tape and maybe civil servants’ constraints. She appeared unable to make a commitment sadly.. regardless of pressure from Norman Lamb MP. If there is a will, there must be a way.

Yes I accept there are many conditions causing chronic pain and quite a number who have been given funding for research to find a cure, but we fibromites – the Fibromyalgia Cinderellas, have no funding for research and apparently must endure our pain, a poor quality of life and the huge financial burden that fibromyalgia imposes, not to mention the hoops the Benefits people ask you to jump through.

What makes me mad is the time it takes (at least 2 years) to get a diagnosis and the enormous costs in those 24 months (at least). We spend hours seeing doctors, specialists, having blood tests, x-rays, scans, all in a process of elimination. If over two years we see three or four specialists, doctors and others and it costs, for example, say £5,000 for one person to get diagnosed (I am guessing), just multiply that by 2.7 million people. (Sorry no good at maths.) What a staggering cost that must be when much less could be spent on research in an attempt to save NHS money. Does the Department of Health care about this major drain on resources?

WRITE TO YOUR MP FOR HIS SUPPORT

Send your MP chapter and verse about your aches, pains, symptoms and quality of life or lack of it, the financial burden you face. Urge him to help you by supporting all these cross-party points raised at the debate. It is the MPs who are pulling the purse strings in the ‘corridors of power’.

Ask your MP to support these points and raise them again in Parliament – they are all valid and raised during the fibromyalgia debate on May 5. See the previous story for the full text of that debate.

* Providing better education for doctors enhancing their knowledge about fibromyalgia,

* The importance of fast diagnosis and the provision of treatment,

* For an improvement and wider access to pain management,

* Highlight the lack of focus on the illness in the Department of Health,

* For the Department for Work and Pensions to address the condition and take it more seriously,

* Consideration a nationwide awareness campaign to highlight fibromyalgia syndrome,

As Pam Stewart has said there is much work still to be done.and we have a fight on our hands. You can help from your own home by contacting your MP. Tell him to read the full debate on this website. Be sure to tell him where you live and that you are one of his constituents. He will want you to vote for him at the next election so hopefully he will help you.

How do you contact your MP? Log on to http://www.theyworkforyou.com/ add your post code and click send a message to you MP. Best type it out first and then cut and paste into the little box.

I am considering writing an e petition on the No.10 Downing Street website raising these points. Will you support that and sign it? If so watch this space!

What are you doing on Tuesday,May 12 – our day. Are you celebrating the International Fibromyalgia Awareness Day with some fund raising? Do you have the Fibro What? CD to raise your spirits. If you do nothing else get a copy to help raise funds for research – see http://www.domcollins.co.uk and look at MY SPACE top right hand side. Fibro What? is serious but the three backing tracks will make the family laugh. It is a hoot!

It would be good to hear you have written to your MP. Email me with news from MPs or about Fibro What? on jeannehambleton(@)mac.com. Take care and keep well. Jeanne

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

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