Cheltenham woman in mission to raise awareness of fibromyalgia

From the FMS Global News Desk of Jeanne Hambleton (UK)
Courtesy thisisgloucestershire.co.uk/news/

Monday, May 04, 2009

ALICE Reeve says more needs to be done to help sufferers of fibromyalgia.

The 34-year-old was diagnosed with the condition, which causes wide- spread musculo-skeletal pain and fatigue, 10 years ago. The illness has become so acute she has been forced to seek private treatment to complement the pain management she gets on the NHS.

Alice, who lives in Evesham Road, Cheltenham, is now trying to raise awareness of the condition and get more treatments available for free.

She says she has to travel to a private hospital in London to get injections of vitamins, minerals, magnesium and pain relief, which cost £150.

Awareness of fibromyalgia and treatments for the condition are due to be debated in the House of Commons tomorrow, and Alice is planning to attend.

EDITOR’S NOTE:To view of the May 5 historic fibromyalgia debate log on to
http://www.fibromyalgia-associationuk.org/content/view/385/1/

To read it try: http://fmsglobalnews.wordpress.com/2009/05/09/mps-call-for-fibromyalgia-education-for-doctors-in-first-ever-fms-debate-in-uk-parliament/

She said: “I feel I should be able to have treatment close to home. Another part of fibromyalgia is that you are very, very tired all the time so the travelling does not help.”

Alice has not been able to work in recent years because of the condition, but previously taught English abroad and completed a degree and a masters. She wants to address the stigma attached to fibromyalgia and change people’s opinions.

“Because people cannot see the illness they cannot understand it. Many people have said to me ‘get a life and go and get a job’.

“There is a lot of stigma attached to it. People see it as yuppy flu,” she added.

Alice’s mum Patricia Reeve, who lives with her daughter, is concerned that other families of sufferers do not understand the condition.

She said: “People who suffer need more emotional support from their families. Some families try to bury their head in the sand over it.”

A spokesman for NHS Gloucestershire said: “We are sorry to hear of the patient’s illness.

“NHS Gloucestershire is always concerned with achieving the best possible health outcomes for its patients within the resources available.

“There are some treatment options available through the NHS to help ease the symptoms of fibromyalgia but some patients may prefer to use complementary options.

“It is important to stress that while we do not routinely fund complementary treatment for this condition at this time, we will always consider a request from a patient’s doctor if they believe there to be exceptional clinical circumstances.

“NHS Gloucestershire’s Review Panel takes into account information provided by the patient, GP and hospital consultant and any previous treatment and its outcome. It also takes into account guidance from NICE on any particular treatment, where relevant.”

COMMENTS (26)

I have suffered with Fibromyalgia for many years but was only given a positive diagnoses this February. I tis the most awful disease and the pain and sleeplessness, tiredness and all the other symptoms that come along with it are so debilitating. No-one seems to understand at all. I recently applied for DLA and was turned down becasue my GP report siad I wasnt disabled, which is so unfair as I cannot walk on some days and cannot work at all at the moment as I feel so ill all the time and am in so much pain. My consultant also said in his report that I can walk up to half a mile and I’d love to know where he got that idea from! He saw me once and has no idea of how I live my life day to day!

I feel like no-one wants to help and that my GP just doesnt want to understand this illness. It is time the Govt took notice of this horrible disease and did more to help sufferers. I have no income other than Employment and support allowance and I will soon not be entitled to even that as I live with my boyfriend and he is expected to pay all my bills when this money runs out which is so unfair. I cannot get any help with prescriptions and it just seems that I pay out endless amounts of money on medication and get very little relief.

If one of these Govt ministers had to live with this condition for just one day and suffer the excrutiating pain and tiredness they would soon be trying to sort out ways to help sufferers.

This link lists the 50 most common symptoms of Fibromyalgia http://fmsupport.org.uk/2008/04/50-signs-of-fibromyalgia it might just make people stop and think for a moment if they try to imagine living with all of these every day of your life!

The worst thing is that some days you think you are never going to make it to the end of a day and that you are truely going mad because of this stupid brain fog thing that makes everything so jumbled up in your head and prevents you from thinking properly, it is so frustrating!

I have tried to find a support group in my area but to no avail and travelling is out of the question as I am so tired all the time.

My GP has provided me with no information and anything I have managed to find out for myself via the internet he will not take heed of as he says that a lot of the information we find on the web can be misleading which is just a cop out!

This is the first article I have ever seen connected to any newspaper,so congratulations for bringing this to the publics attention finally. But why has it taken so long for the media to finally realise that there is something newsworthy in reporting the unfairness of how people with this disease are treated by the system.

Maybe if all the UK sufferers got together and presented ourselves at the House of Commons people might sit up and take notice!!
Tracy Hicks, Godmanchester, Cambs
commented on 18-May-2009 11:46

I was extremely intereted to read Alice’s views and congratulate her on her struggle to bring awareness for this condition. I am not a sufferer myself but know well someone who is and the devistating effect it has had on their quality of life. It is shocking that someone should have to travel from Cheltenham to London for basic treatment.which should certainly be provided by the National Health Service. Let’s hope that someone takes notice.
Stella, London
commented on 17-May-2009 22:34

TONY HOWES FEELS NHS A SOCIAILIST IDEA L IN 50S SHOULD SUPPORT ANY ILLNESS AS THEIR IS NO PRICE ON LIFE BUT MONEY IS BECOMING TO IMPORTANT .. IMAY BE LITTLE IDEALISTIC JOHN LENNON FAN BUT PLEASE LETS NOT PUT A PRICE ON LIFE ESPECIALLY IN ALICES CASE AS WE ALL LOVE HER
Tony Howes, London
commented on 16-May-2009 10:09

Unless someone famous get FMS , Media and others don’t care. We need to push , we deserve a cure and soild treatment, Fighting with insurace companys to get medications to make my life livable are only fair I am a human being and I suffer. Why won’t Oprah set up and do a show on FMS ?
Robin Smith, California
commented on 15-May-2009 06:35

It took me around 22 years to get a diagnosis, I saw Dr after Dr as a child and most said it was all in my head, one sent me to Physio with a covering letter saying to humor me.

It was 2007 when I had knee surgery again and I was left unable to bend or straighten the knee afterwards my Dr sent me to see a Pain Specialist thinking that I had Regional Pain Disorder.

When I got to the Clinic I was asked to fill out a questionnaire so I did and waited, while I was waiting to see the Dr he was sitting in his office reading my notes all of them, and reading my answers to the questionnaire, after 20 mins or so he called me in, he asked me key questions then told me that in no uncertain terms that I have Fibromyalgia, I did not know weather to kiss hug or cry, after so long of not 1 single person in the medical profession since I was 12 years old believed me or seemed to care to find out why my body hurt so much there was this one Dr who now I felt was my new best friend, finally to have something to say to people when they ask what have you done to yourself when I walk with crutches, and funny looks when people see me using a scooter when I am shopping and parking in disabled bays people thinking to themselves she doesn’t look like she deserves that bay. I had a response I could finally say what I had, I don’t want sympathy although some would be nice sometimes, I want understanding not odd looks and comments about parking and using the scooter.

FMAUK have helped me so much I go to group meetings and talk to fellow sufferers which is a great help especially as they are the only people who really understand what it is like to be us. I am lucky with my Husband and Children who do understand and my Family who have always stood by me and knew I was hurting and were as frustrated as me not knowing why.

TREAT THE PATIENT NOT THE INJURY OR REASON YOU WERE SENT.

That is why I finally got diagnosed, My pain Dr treated me not just my knee which was why I was sent to him, if all medical personal think this way we would all be so much better off.

FIBROMYALGIA needs to be more commonly known in the medical profession to stop someone else having to wait 22 years to get diagnosed.
Jaki, Wirral
commented on 14-May-2009 12:32

i have had f.m. for now going on 11 years,the struggle to find out what was wrong ith me took many years and seeing many drs…I now still live with the pain , the not sleeping all nite,and the parts of my body that does not always work right, to some points i just don’t go to far from home ,i miss out on family dues at times because i just don’t have the energy to attend.Some days i have feeling of not even wanting to talk to anyone ,I do have a very stronge support team of family and friends but still some days i feel like if i say again i dont feel well i feel like i am weak .It will always be a up hill battle.Even foods can cause problems for me so again i have to watch what i eat.And if i have to run across a dr that still in this day and age that says there is no such thing ,i think to myself then walk in my shoes for a day .Again in Canada it is a fight to get any kind of disablity for f.m.they tell you if you are not in a wheel chair you are not looked at but my question to that is who will hire someone that some days can barly get out of bed or that your feel sick or am so tired from not sleeping the nite before that there is no way you can hold down a job.Let alone some days of even getting dressed as again cloths can feel very tight on a person let alone the energy to get dressed.yes i know there is meds out there that work but again not for everyone,as some meds make a person even feel sicker. if i had one wish that would be that some day they will find a cure for everyone because again everyone comes by this f.m in more then one way ,any were from a car accident to something bad happened in thier life ,also to much stress again a big part of a very big no no for anyone with f.m. yet we live in a very stressfull world.It is not only very hard on the people that live with f.m. but also our loved ones watching us go throw this .So for anyone living with f.m. i wish you a pain free day .and i tell anyone i talk to read up on anything you can find about f.m.and if you have a dr that does know about f.m. talk to him about all your feeling and about any info you run across.and don’t give up on finding a dr that knows about f.m it is real it is not in your head .thank you for listening to what i have had to say and i hope i have been of some help.
louise chandler, canada
commented on 14-May-2009 04:21

I was diagnosed with fibromyalgia in 2005. I have progressively gotten worse since then. I suffer daily with this debilitating disease, and it is a full-time job just to manage the pain, and all the symptoms that goes with this illness. I hardly ever sleep…and I suffer terribly with concentration(fibro fog). Thank you Alice, for getting the word out. This is a real illness people suffer from, I know…because I am one of them. Fibromyalgia needs to be taken seriously, treated just like every other debilitating disease out there. May 12, 2009 was “National Fibromyagia Awareness Day”. I hope many were educated, and will continue to be educated on this invisible illness.
Janet, North America
commented on 13-May-2009 23:00

I was diagnosed with Fibromyalgia a year and a half ago. I have had symtoms for years. I can barely walk on somedays. The pain in my back and legs makes me cry everyday. My doc has faxed a note to Michigan Works that I can do everything and I have no restrictions. I’m clearly misunderstood. I don’t know why my doc would do this to me. Just because you can’t see it doesn’t mean that it’s not there. We need more docs to understand this diease. The pain is real and it never goes away! I’m so sad and very depressed.
Sandra Busch, Michigan
commented on 13-May-2009 13:45

I have fibromyalgia and have had it for a few years now but was just diagnosed a year and a half ago. My doc just faxed a note to Michigan Works that I have no restrictions and can do anything. The pain I feel everyday sometimes makes me not able to walk. I cry alot and am very depressed. I know that the pain is real. Why did my doc not understand? Why would he put me through this? I’m very sad and misunderstood.
Sandy Busch, Michigan
commented on 13-May-2009 13:40

It is always good when people are aware of illnesses such as this that are often misinterpreted. Sufferers should get more sympathy and therefore more help
angela edwards, Carmarthenshire
commented on 13-May-2009 10:56

It took me 3 years to get a diagnosis of FM and I had to ask fro a referral to a rheumatologist myself. If I hadn’t I’d still be none the wiser. I say a neurologist a few times but he couldn’t find anything wrong so threw me back out into an uncaring system instead of suggesting I see someone else. I was told not to ask to see him again as there wasn’t anything wrong.

A bit more education and understanding in the NHS would go a long way to helping people. We are made to believe it’s all in our heads or down to depression… well you’d be depressed if you were in pain 24/7!

Doctor’s packs with information for your GP can be obtained from FMA UK a registered charity trying to get the word out to as many people as possible.
Gill, S Wales
commented on 13-May-2009 00:46

I have had FMS for about 16 years but was only diagnosed 10 years ago. I had never heard of it, and neither had any one else I knew. 10 years later nothing seams to have changed much. I haven’t worked for 9 years and struggle to get through the day. i rely on my parents for many things and between sleeping / resting and attempting life’s esstentials i don’t have much time or energy for much else. I take amitrypline and fluxotine and would love to be well enough to work again and not rely on benefits. My doctor say that we don’t know what causes it so how can we treat it? More research please, and more publicity – i haven’t seen anything on TV today about Fibromyalgia Awareness Day.
Karen, Worcester
commented on 12-May-2009 19:26

I am 18 years old and have been diagnosed with Fibromyalgia for a while now. Having this illness means i have to use crutches on bad days, I can never go out with friends becauuse i’m too tired, my college work suffers too, and yet we are still not getting recognised as we should be. I’m all for what FibroAction is doing, i think everyone should be aware how debilitating this condition is.
Emma, Lincolnshire
commented on 12-May-2009 18:08

I emailed our local news programme, but didnt even get a mention or indeed a reply. My husband emailed the World Community Grid and the reply from them was “as its not a fatal illness they cannot research it” ok so we all know we wont die from it, but our whole life chages dramatically because of it. Its like being thrown on the scrapheap of life
Anne Walker, Glasgow
commented on 12-May-2009 17:36

At nearly 49, but young for my age, I have a long memory and remember the struggle that sufferers of MS and ME had to get the severity and extent of the conditions to be recognised by the powers that be as being genuine and not figments of the imagination. When reading about fibromyalgia. I read the same kind of stories of discrimination, misunderstanding and to some extent ignorance from the very bodies set up to care for sufferers namely the NHS and H. M. Gov as those writen in the 1970¿s about MS and later about ME. It seems that nothing realy changes, in that the NHS and H. M. Gov have to be dragged kicking and screaming into accepting newly identified and dibilitating conditions that are recognised in other countries. And, possibly the only way to make the NHS and H. M. Gov to see reason is to follow the example of past campains and raise the publics awareness of the condition and keep it there untill that little light in the minds of a ministers turns on and they start singing ¿I¿ve seen the light¿, but until then don¿t hold your breath but keep up the good work.
Keith Sharpe, Basildon
commented on 12-May-2009 15:00

I had heard of this illnes, but until i read your article, like many other people,i was unaware of the severity of this horrendous condition .
Thank you for opening my eyes to the amount of suffering and loss of normal life that these people have to endure.
Gillian Parkes, Moreton in Marsh, Glos.
commented on 12-May-2009 12:05

Fibro is a horrendous life changing illness. i am 22 i cannot work i recently married. no one seems to know what top offer in terms of pain relief. i have to use a stick to walk. what my future holds i have no idea but it doesnt look that bright at the moment. we need all the help we can get to raise awareness of this terrible life changing disease
laura, yorkshire
commented on 12-May-2009 08:43

Many thanks to this newspaper for highlighting this illness. This is an illness of the 21st Century, which most of the population do not know about. Perhaps we could have more tolerance and compassion.
Annie, Cheltenham
commented on 11-May-2009 21:48

I was dignosed in 2007 as having fibro, after about 6 years of lots and lots of tests that all came back normal. I felt like a hypochondriac and was treated like one at times, simply because this is an invisible illness and does not show up in routine tests. My last GP was an idiot who obviously was a non-believer and who refused to prescribed the only mild medication I was taking. I am in pain 24 hours a day, every day of the year, some days I can barely move. Yet the struggle thousands of us have to get any kind of DLA benefit and which is usually refused! This IS a REAL disability, if we had M.S. (no offence to MS sufferer’s) we would be able to access more benefits, more tretments and more understanding so much easier. Life is a struggle as it is, yet we are made to struggle by our own government and health system to access a diagnosis and suitable treatment, as well as the benefits.

I have also tried to raise the awareness for Fibro Day (12th May) by emailing local TV and radio, local newspapers, GMTV, but nobody has returned an email, which just goes to show how ignorant and unsympatheitc and plain disinterested a lot of this country really is. We need this to be recognised by ALL medical professions, ALL government and health departments, and as many people locally and nationally as possible.

Rant over, I’m now going back to bed before I have to pick my children up from school, as if I don’t, I will be ILL for some time and unable to even cook for them, Thank god I have a lovely partner who does understand!
Linda, Merseyside
commented on 11-May-2009 13:13

As the Operations Director of an International Medical Assistance Company, as well a Travel Insurer for people suffering from medical conditions I would just like to express my support for this campaign. All the more so given that my wife has recently been diagnosed with Fibromyalgia.

MIA Online already insures numerous Fibromy’ patients and we are aware of how debilitaing it can be.
Sir Jan Dalrymple, Rayleigh
commented on 11-May-2009 10:01

I was diagnosed with FM in 1992. I have very limited use of left side now and am constantly in pain. I actually use a wheelchair for distances and also have orthotic shoes and crutches. I do not allow this to be my life but can completely understand the frustration when people say ‘you’re just being lazy’ or ‘we all get tired’.
Go to the UK Forum for FM, it is a great release and a chance to chat to fellow sufferes who will never say those things.

It’s hard to have self belief when you want to detract from your physical disabilities and, of course, it alters your everyday routine but we should all support research into it, if only for the future sufferers.
I work part time which is a struggle but I won’t give it up. I am also a single parent of an 11 year old but he is a fantastic support for me, considering it changed his life as well.
Elaine, Tewkesbury
commented on 10-May-2009 15:23

I am 43 and have recently been diagnosed with fibro but have had symptoms for years. I am taking duloxetine and gabapentin for pain relief but find this still leaves me with plenty of pain.

Fatigue is the main problem. I’ve had to give up employment, Open University study, voluntary work and most of my social life. I now struggle to cook and cannot cope with the housework.

The future looks very bleak. There is no hope of returning to full time work but I do not want to spend the rest of my life living off benefits. The pay is lousey and there are no days off from pain and fatigue.
Hazel, Evesham
commented on 08-May-2009 07:45

I had post-viral fatigue after a bout of tonsilitis a year ago January. I have now been diagnosed with Fibromyalgia (Chronic Fatigue Syndrome) – my biggest concern is the fuzzy brain (or brain fog) – I have just been referred to the CFS clinic that operates out of Bristol at more local clinics and am awaiting an appointment – just some advice on managing the condition would be really helpful. The pain, especially in my feet and legs is really uncomfortable – I do work, and am taking part in the Sue Ryder Midnight Walk this coming Saturday – am determined this condition will not take over my life completely. My friends will stay with me until I do the walk. They are being very supportive. I feel for anyone who has the same condition, and look forward to seeing some progress in its more formal recognition.
Tracy, Cheltenham
commented on 06-May-2009 18:47

I was diagnosed in December last year with Fibro as my partner calls it, untill then i had never heard of it but have since made contact with another sufferer.As i am on strong painkillers for my back my Dr. has since put me on anatriptoline which i have found helps with it. But i can get it for three or four days a week then have two or three days without it . It seems a cycle that i have told myself to accept it,but as i’m on other meds and painkillers i find wheni got the pain i just found the best position on the sofa and sleep alot.I can wake up in the morning and feel fine then an hour or so later feel ILL.Before i was diagnosed with Fibro my Dr. sent me to the hospital to be tested for Rhumatoid Arthritis the hospital Dr dagnosed the fibro,as i sai put me on Anatriptoline and gave me a booklet about fibro and sent me home with another appointment to see him in 6mths time
bob, Hertfordshire
commented on 04-May-2009 14:25

I too have suffered from this condition for years. Being in constant pain 24 hours a day is exhausting and depressing. Sleep is in short supply as it is impossible to get comfy. If one more person tells me I “look well” I may well scream!! Do magnesium injections help? Many thanks to Alice for taking up the cause. I wish her everything I wish myself.
victoria, cheltenham
commented on 04-May-2009 13:17

The use of local anaesthetic injected intramuscularly as pain relief and the use of injected vitamins and minerals to counteract deficiencies in someone with reduced absorption capabilities is not a complementary therapy.

Using drugs to treat pain is the remit of traditional medicine. Treating vitamin and mineral deficiencies is also part of traditional medicine.
Lindsey Middlemiss, Berkshire
commented on 04-May-2009 12:39

(Copyright Harmsworth Newspaper Printing

http://www.thisisgloucestershire.co.uk/news/Cheltenham-woman-mission-raise-awareness-fibromyalgia/article-958681-detail/article.html?cacheBust=7vk40nSNjqBF&success=true#community)

My thanks to Sue SB for bringing this story to my attention. It is good to share. I wonder how many more fibromyalgia patients have been refused support by the GP when applying for benefits. It is a pity they cannot try having this invisible disability for a week to see how it really feels and that IT IS REAL!

FOR MORE FIBROMYALGIA STORIES SEE: http://jeannehambleton77.wordpress.com

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

MPs CALL FOR FIBROMYALGIA EDUCATION FOR DOCTORS IN FIRST EVER FMS DEBATE IN UK PARLIAMENT

From the FMS Global News Desk (UK)

Courtesy/Source Hansard

by Jeanne Hambleton Copyright 2009

FIBROMYALGIA THE CINDERELLA CONDITION

Fibromyalgia made history on May 5 with a first time debate on the condition in the House of Commons Westminster Hall, prior to International Fibromyalgia Awareness Day (May 12).

Rob Wilson MP, chairman of the all party parliamentary group on fibromyalgia, called on the Parliamentary Under-Secretary of State for Health, Ann Keen MP, to assist fibromyalgia sufferers by providing better education for doctors enhancing their knowledge about fibromyalgia. He urged the Department of Health to consider a nationwide awareness campaign to highlight fibromyalgia syndrome, the importance of fast diagnosis and the provision of treatment?

“Do the millions of people who suffer with this illness not deserve at least that from their NHS. It is unsatisfactory that many GPs are not confident or able to diagnose the illness in a timely fashion,” he said.

Stressing education about fibromyalgia is urgently needed and that the Government, through the NHS, could be the catalyst, Rob Wilson suggested the condition is a significant drag on the economy. There were also calls for an improvement and wider access to pain management, and it was felt that there was clearly no focus on the illness in the Department of Health.

Norman Lamb MP described fibromyalgia as something of a Cinderella condition. It is widely misunderstood and there is a great deal of ignorance about it, which has a significant impact on those who suffer from it. He called for the Department for Work and Pensions to address the condition and take it more seriously.

It was reported by Rob Wilson that there were 2.7 million people in the UK suffering with a very common illness – fibromyalgia. It is in fact as common as rheumatoid arthritis and can be even more painful he said.

He said a survey of five European countries had shown that fibromyalgia affects between 2 per cent and 4.5 per cent of the population, or at least one in 50 people, from children to the very elderly. Fibromyalgia had been shown to have more impact on patients’ lives than many other forms of widespread pain and chronic illness.

“I believe that the sheer scale of the illness and the suffering that results from it mean that it is high time fibromyalgia was taken seriously as an issue,” he added.

Rob Wilson made reference to constituent Jean Turner who has been without a diagnosis for years. “I am sure that we would all agree that the 13 years taken to reach a diagnosis in Jean’s case was far too long,” he added.

He suggested that all Jean and other sufferers would ask is to be believed when they say that they are in pain and are not hypochondriacs. Sufferers want support to be available from the NHS. They want guidelines finally to be produced by NICE, and they want GPs to be trained properly in diagnosing the condition.

Describing fibromyalgia as a very common illness Rob Wilson suggested fibromyalgia is in fact as common as rheumatoid arthritis and can be even more painful. A staggering number of people in the UK who suffer from fibromyalgia may not hold down a paying job or enjoy a social life.

Although the cause of fibromyalgia has yet to be found, he suggested the disease often develops after some sort of trauma that seems to act as a trigger, such as a fall or car accident, a viral infection, childbirth, an operation, a huge emotional event or without any obvious trigger. Research had identified a deficiency in serotonin in the central nervous system, with a resulting imbalance of substance P, a spinal fluid that transmits pain signals. The effect of that is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness.

“We can only hope that research will discover the cause and result in more effective treatment in the years to come,” he added.

Discussing diagnosis Rob Wilson suggested it is difficult to identify the illness by standard laboratory tests or X-rays. Blood tests and scans will return a negative result and a patient will not necessarily look ill. Many of the symptoms are also found in chronic fatigue syndrome, rheumatoid arthritis and osteoporosis. It is not surprising that fibromyalgia has been dubbed ‘the invisible illness’.

“The problem comes when doctors do not have the experience or expertise to make a diagnosis. Nearly half of all specialists reported fibromyalgia as being ‘very or somewhat’ difficult to diagnose,” said the MP. “The average time taken for diagnosis is more than two years, and patients report seeing between two and four physicians before a diagnosis is reached. That lengthy period can be very worrying, frustrating and upsetting for patients.

“Despite the fact that several specialist fibromyalgia syndrome clinics are provided by NHS consultants around the UK, most of those do not appear in their own right on the NHS choose and book system. Even those GPs who know about the condition—and there are too few of those—who are looking for specialist help within the NHS cannot always refer patients directly to consultants with an interest in and knowledge of fibromyalgia. One of the immediate actions that the Minister could take today is to rectify the situation. Those clinics could be added to the ‘choose and book’ system, and the NHS could build and provide an extensive list of accepted specialist NHS services around the country.”

Currently fibromyalgia treatment reduces pain and improves sleep. Treatment focuses on the symptoms not the condition. The best that a doctor can do is give guidance on ways of coping with and treating some of the symptoms.

“I hope that it does not appear that I am criticising GPs, specialists or the NHS in general. That is not my purpose, as I believe that they do fantastic work under immense pressure; however, a major problem is that GPs get little or no training on the condition, and even consultant rheumatologists, who would usually diagnose fibromyalgia, often have little or no specific training. Professional development is currently hampered by out-of-date medical tests containing erroneous information. Much of the fibromyalgia information that is used by the NHS is provided by voluntary organisations such as the Fibromyalgia Association,” said Rob Wilson.

He pointed out that the NHS Direct online information had been brought up to date on fibromyalgia in 2008 by FibroAction, a charity supporting the syndrome.

Rob Wilson insisted, “It is clear that things need to change. Getting an accurate diagnosis is difficult, and about half of our GPs admit that the condition is often misdiagnosed. They highlight a lack of confidence in their ability to recognise the symptoms of fibromyalgia, or to differentiate the condition from others with similar symptoms. The problem does not rest with GPs alone. It is widespread in the medical profession. Education on the condition is urgently needed; the Government, through the NHS, could be the catalyst.”

Philip Hollobone MP said the NHS needs to provide as much help and support for GPs as possible. If it is difficult for specialists to identify the condition, it must be near to impossible for GPs.

Rob Wilson continued, “I also know that the Minister’s heart is in the right place, and that she is anxious for the NHS to help.”

He pointed out recent parliamentary questions from Members throughout the House have had a less than encouraging response. In June 2008, the Member for Twickenham (Dr. Cable) asked what plans the Department of Health had to improve treatment for people with fibromyalgia. The answer came, “There are no specific plans to improve the treatment for those living with fibromyalgia.”—[Official Report, 30 June 2008; Vol. 478, c. 655W.]

Another Member asked how many people were diagnosed in his constituency, the region and nationwide since 1997. The answer was: “Information on the number of people diagnosed with fibromyalgia is not collected.”—[Official Report, 21 November 2007; Vol. 467, c. 998W.]

He said, “Among other things, I asked the Minister what steps were being taken to raise awareness of fibromyalgia, and what progress there was on diagnosis and treatment. The response was: ‘We have made no assessment of the progress being made by the National Health Service into improving the diagnosis and treatment of fibromyalgia. We have taken no recent steps to raise the awareness of fibromyalgia among the general public and health professionals.’ ”—[Official Report, 9 October 2007; Vol. 464, c. 516W.]

Suggesting there is a discernible pattern Rob Wilson said there is clearly no focus on the illness in the Department, and no focus on it in the NHS, yet the condition acts as a significant drag on the economy. In 2006, through a parliamentary question, Rob Wilson discovered that 8,400 people who were claiming incapacity benefit or severe disablement had been given a primary diagnosis of fibromyalgia.

“We know that that is the tip of an iceberg, as most fibromyalgia sufferers on benefits will have been diagnosed with something else. The economic cost of the failure to diagnose the problem swiftly does not affect only the Department for Work and Pensions; the cost to the NHS and local authorities, too, will be huge. Better awareness and education of health professionals would considerably reduce that financial burden,” said Rob Wilson.

MPs paid tribute to the work of all local supports groups including Kettering Nene Valley support group.

Rob Wilson recognised the ongoing work of many groups that work tirelessly for the sufferers of the condition, and do their best to raise its profile but the message regularly comes back that there is a problem in raising the profile. Raising the profile of the condition is difficult without the support of the relevant authorities.

He spoke about an application made almost two years ago to National Institute for Health and Clinical Excellence (NICE). The aim was to establish clear guidelines on fibromyalgia.

“In May 2008, FMA UK had still not received a response, and asked me to intervene. Despite my intervention, still no response was received. Suddenly, and incredibly coincidentally, in the last couple days—since today’s debate was arranged—FMA UK has finally been contacted by NICE. FMA UK was informed that its application had been unsuccessful,” reported Rob Wilson.

“The fact that FMA UK has received an answer does not excuse the arrogance or incompetence—or both—that NICE has shown until now. Frankly, it is insulting and deeply frustrating for those who work tirelessly to raise the profile of the condition to have to wait for a debate such as today’s before the relevant authorities take them seriously. A delay of two years is not good enough,” he said.

It is imperative that a clear medical framework is set out for GPs. It is more than long overdue. Although he urged NICE to consider the matter again he requested the Minister to give fibromyalgia sufferers some hope by confirming that she will intervene, asking NICE to ensure a clear set of guidelines for the diagnosis and treatment of the illness are approved?

On this he added, “It is not acceptable that NICE has only just acknowledged FMA UK’s application to provide a clear and unequivocal set of guidelines for GPs. Those guidelines could be used in the training of the medical profession and could reduce the stressful experience currently associated with diagnosis”.

It was suggested that many fibromyalgia sufferers look to the Department of Health for leadership and support. They were gratified that the chief medical officer, Sir Liam Donaldson, recognised the impact of fibromyalgia and its prevalence in the UK as a cause of chronic pain in his annual report of 2008.

Sir Liam’s annual report, published in March 2009, had said: “Chronic pain reduces the quality of life more than almost any other condition. The impact of pain on people’s lives is significant, bringing emotional and financial burdens to patients and loved ones. A major initiative to widen access to pain services is badly needed.” He stated that FM sufferers require information, and access to NHS tailored services.

Tribute was paid to Professor John Davies at Guys Hospital, the Russells Hall Hospital in Dudley, good multi-disciplinary teams at the Royal Bolton and Poole hospitals, and an eight-week course for fibromyalgia patients that is being run by southwest Essex community services in conjunction with Basildon University Hospital. Rob Wilson made reference to Lindsey Middlemass, the chair and founder of FibroAction and referred to her long struggle for a diagnosis and her work with NHS Direct and new guidelines.

In February 2005, Dr. Ernest Choy and Dr. Serena Carville, from King’s College London, produced a nine-point recommendation for the management and treatment of fibromyalgia. It is a credible report and is worth mentioning for that reason. Choy and Carville concluded that a full understanding of fibromyalgia requires an assessment of pain, function and the psychological impact on patients.

They also believe that individually tailored exercise programmes, including aerobic exercise and strength training, can be very beneficial, as well as other therapies, such as relaxation and physiotherapy. Relaxation works very well for almost everyone affected by this condition. It reduces tension in the mind and body and calms the symptoms, especially the pain. Choy and Carville concluded that, ultimately, medical professionals need to be able to listen to, and believe in, an individual’s experience of pain. Only then can a programme of treatment be established to reassure them and reduce stress and anxiety.

Asking the Minister to help those with fibromyalgia Rob Wilson suggested, “It is clear that we need to work towards providing greater education for general practitioners. It is unsatisfactory that many GPs are not confident or able to diagnose the illness in a timely fashion. Timely diagnosis is key to helping people with this condition. Secondly, it is not acceptable that NICE has only just acknowledged FMA UK’s application to provide a clear and unequivocal set of guidelines for GPs. Those guidelines could be used in the training of the medical profession and could reduce the stressful experience currently associated with diagnosis.

Martin Horwood MP said he was taken aback by some of the statistics that Rob Wilson gave, which were new to him. He felt there is the risk—this was the experience with drugs for dementia and other illnesses—that NICE will use the lack of a good evidence base as a reason for refusing to recommend treatment. Is that a risk, given some of the issues that mentioned, about credibility, belief and so on?

“We are looking not for advice on drugs, but for a set of guidelines so that people can be diagnosed quickly and GPs can properly understand their functions in this regard,” Rob Wilson said.

Effective treatment needs to be available throughout the country, but that should be signposted by the NHS, rather than third-party organisations. The profile of fibromyalgia desperately needs to be raised.

“As I mentioned before, despite its dedication, the voluntary sector can only do so much. We all have a part to play in raising awareness, but help from the Government is much needed. As we have seen, fibromyalgia is a complex condition with numerous contributing factors, and although research has advanced our understanding, it is clear that much work remains to be done.

“I know that the Minister has many pressures on her time and that there are also many pressures on the resources of the NHS. However, I know that she understands the chronic pain and suffering affecting millions of people throughout the UK and that she will do her utmost to provide assistance. I hope that today’s debate will help to raise the profile of this ‘invisible’ illness. That is the very least that I can do to help to support the many campaigners who have done their best to raise its profile,” added Rob Wilson.

Roger Williams MP said part of the problem for sufferers is that the condition takes so long to be recognised by the health services that they often come to believe that they are in some way responsible or guilty.

“They exhibit symptoms but are without the support necessary to bring some relief….. we have very little idea of what causes the condition—whether it is the genetic make-up of the individuals or an environmental aspect that they have experienced. Evidence is now being gathered relating the absence of serotonin to the symptoms of the disease. If that can be established, a much more profound and substantial method of treatment could be achieved. I have seen evidence that meeting other sufferers to discuss their experiences, symptoms and treatment can give individuals great confidence that there is a possibility that something can be achieved to alleviate their symptoms.

“The Minister would do well to take on board the comments made by the hon. Member for Reading, East and do what she can to ensure that the condition is recognised, that GPs diagnose it earlier than in the past and that provision is made for help through pain relief and encouraging good sleeping patterns, which make such a difference to the sufferers. I ask the Minister to take on board all those concerns,” said Roger Williams.

Norman Lamb suggested this was one of those occasions when all the parties can come together to make the case for improving awareness of fibromyalgia both among the public and the medical profession—particularly in primary care.

Fibromyalgia is something of a Cinderella condition. It is widely misunderstood and there is a great deal of ignorance about it, which has a significant impact on those who suffer from it. It is right to acknowledge fibromyalgia awareness day, which is on 12 May. It is a moment to concentrate minds and to focus the attention of the Department of Health, the National Health Service and NICE on a more effective approach to tackling the condition.

He said, “Sufferers often have a sense that no one believes them, especially when they have to apply for benefits because they cannot keep their employment. They feel that no one believes that the condition is disabling, so they are left utterly alone. It is a chronic condition, and one that applies particularly to women. Its impact on relationships, social lives and the capacity to work is substantial. It is often the case that conditions such as fibromyalgia, myalgic encephalomyelitis and chronic fatigue syndrome have a greater impact on people’s lives and their capacity to function as human beings, than many conditions that attract much greater attention in public discourse and in Parliament. It was a breakthrough when the Chief Medical Officer acknowledged the significance of the condition and made a clear plea for action to be taken…… a major initiative to widen access to pain services is badly needed.”

Norman Lamb continued, “It is hard to convince GPs and others that the problem is genuine. A newspaper article quoted Julia Fitzgerald, who, after eventually securing a diagnosis, was offered antidepressants. That was the medical profession’s response to her condition. Moreover, the fact that it takes between two and four clinicians to secure a diagnosis is simply unacceptable….. the priority must be to improve the training of GPs and other members of the medical profession, to ensure that when a patient presents with the condition they receive greater understanding. It is not good enough just to look at the training of new doctors coming through the system. We need to focus on continuing professional development for those who are already in post and who are all too often failing to give their patients an adequate or accurate diagnosis….. one cannot escape from the sense that the Department of Health has a lack of interest in the issue, so this is a good occasion for the Minister to reassure us that that is not the case.”

Following talk about getting the referral from primary care to a specialist centre right, Norman Lamb said the problem is not unique to fibromyalgia. Persuading the NHS to make the right referral can be a real challenge. Changing or adapting the ‘choose and book’ system to ensure that when any clinician across the country is faced with a patient with such a condition—or has the potential to suffer from it – they can point the patient to the right specialist centre wherever they live would be an enormous advance.

Returning to the role of NICE he said, “It is scandalous that it has managed to ignore for two years a clear request for guidance on the treatment of fibromyalgia. We hear that the application was unsuccessful. I now ask the Minister to engage with NICE?”

Ann Keen, (Parliamentary Under-Secretary (Health Services), Department of Health, replied that NICE was an independent body and Members had accepted the importance of that independence.

Norman Lamb accepted the absolute importance of the independence of NICE, but asked the Minister if she was able to request that it investigate a particular condition and consider providing guidance?

Ann Keen said the importance of NICE’s independence makes things difficult. But she was confident that the debate will assist in other ways.

Norman Lamb insisted a request would not challenge NICE’s independence—it is not an order. He asked would the Minister request NICE to investigate the possibility of preparing guidance on the treatment of fibromyalgia? That would be a very valuable step for her to take.

Bob Spink MP suggested NICE will be aware of political indifference in the House and prejudice in the NHS against what is a debilitating condition. Consequently, the Benefits Agency does not take the issue as seriously as it might, which disadvantages people with real, debilitating conditions who deserve better.

Norman Lamb recommended NICE could take from the debate a clear message that MPs want it to take the condition seriously and to come up with clear recommendations for its treatment. It was right to identify the importance of the Department for Work and Pensions taking the condition more seriously. There can be nothing worse for a person who is unable to work because they suffer from a debilitating condition than benefits officers not to accept or believe that the condition is serious. That has to be addressed.

He pointed out that pain management services are not part of the 18-weeks target and many people in the country are left waiting a scandalously long time for access to them. Given how debilitating the condition is, it is important that access to pain management is improved.

He quoted Sir Liam Donaldson’s recent annual report, “Chronic pain reduces the quality of life more than almost any other condition. The impact of pain on people’s lives is significant, bringing emotional and financial burdens to patients and their loved ones.”

Pointing out the impact of the condition on whole families Sir Liam had said, “A major initiative to widen access to pain services is badly needed.”

Norman Lamb suggested the Minister could provide enormous reassurance to those who suffer from the condition if she announced the clear initiative for which Sir Liam Donaldson has called.

Anne Milton MP Shadow Minister, Health, paid tribute to the FMA UK website and the variety information adding she was extremely impressed. She said the website also raised the difficulties of diagnosing and treating children, and the problem of education.

“The economic cost in terms of benefits is just one of the problems. I put together a flow chart of how someone with fibromyalgia might feel. It starts with pain—people do not know the origin of the pain—and goes on to reduced mobility and social isolation. The lack of diagnosis causes depression; people lose their employment and families break down. Both lead to reduced income. Furthermore, the impact on family, carers and friends is immense. Fibromyalgia and other undiagnosed chronic conditions take a significant toll on the spouses and children of the people who have them. In an ideal world, we would have increased awareness, early diagnosis and intervention, treatment, support and rehabilitation. That applies to fibromyalgia and many other chronic conditions,” she said.

The debate had done much to highlight the problems faced by fibromyalgia sufferers. The belated response from NICE, to which many Members referred, was not the answer they wanted, but it demonstrates that these debates are useful. They raise awareness and get the Minister’s attention – she has a significant brief.

“Sometimes, particularly at the moment, the House gets something of a knocking from the press and the public, but opportunities such as this debate are extremely important. They demonstrate that we can make a difference,” said Anne Milton.

She continued, “I hope that the Minister will confirm and re-establish that the Government take the condition seriously. Specifically, what steps is she taking to ensure that the training of doctors in particular includes a greater awareness of the significance of the signs and symptoms with which patients might present?

“As medical care and treatment become increasingly specialised, it is important that the Government take steps to ensure that GPs receive continuing professional education so that they can be confident in recognising and accessing treatment for such conditions. It involves not only GPs but all health care workers. The issue could also, in some instances, be addressed in schools. There has never been a greater need for awareness of the implications of signs and symptoms in the minds of the public sector workers who work with and meet the people affected.

“What specific plans does the Minister have for improving the treatment of fibromyalgia and access to secondary referral? I am sure that she will take steps to address that. Raising the profile and awareness of fibromyalgia among the groups that I mentioned is vital. Will she give the matter personal attention and demonstrate that the Government is aware that people with the syndrome are not getting the attention that they deserve, and will she take steps to ensure that attitudes from the Department of Health downwards change so that people get the care that they deserve and need?

“This is also a useful opportunity for the Minister to clarify the position of NICE. As she said, NICE is independent, which is extremely important. However, as I understand it, it works within a framework put together by the Government. Although we broadly welcome NICE’s independence and much of the work that it does, there are situations in which access to treatment regimes is not being made available by NICE. Response is slow. I am sure that she will take this opportunity to clarify those issues and demonstrate that she can do something to improve the lot of people with fibromyalgia,” said Anne Milton.

Ann Keen acknowledge that fibromyalgia had not discussed in the House before. She said she knew Rob Wilson had worked extremely hard to champion the cause of people living with fibromyalgia, not least as chair of the all-party parliamentary group on the condition.

“I am grateful to him for giving us the opportunity to debate it today. Every one of us wants the best for those suffering from that chronic, distressing, uncomfortable and painful condition,” said the Minister.

“I recognise how distressing fibromyalgia can be to those living with the condition and to their families, and I know that much of that distress is caused by difficulties recognising, acknowledging and accepting the condition and its impact. Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being and disrupt work, social and family life.

“What can we do to raise the profile of fibromyalgia? I believe that this is the start of an important dialogue, particularly with the all-party group. I think that Members, particularly Front Benchers, recognise that setting NHS must-dos is not easy, as such things affect every one of us and every part of our bodies. The Department of Health must be sparing in setting those priorities centrally because of the criticism that we often receive when we attempt to do so. I know that everyone in this Chamber is here in good heart, but it is important to put it on the record that if we were to keep giving the NHS priorities, my list, let alone those of the rest of the ministerial team, would be long.

“The Department has set up the National Quality Board to advise Ministers what priorities the National Institute for Health and Clinical Excellence should adopt in setting NHS standards, as well as which conditions require the Department’s closer attention. The priorities are likely to be based on an objective assessment of the burden of disease and an analysis of the gap between the quality of existing services and best current practice. That is something that we can work with.

“Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being, which in turn affects the social and financial economy of the family, the community and the country. Sadly, there is no cure, so treatment aims to ease symptoms as much as possible and improve patients’ quality of life. However, we all know that care for people with fibromyalgia varies widely, as has been demonstrated by Members today, particularly those representing rural areas. In the worst cases, people with the condition are left feeling that the health care system does not recognise their illness. I can understand why patients would feel that way. I acknowledge the points made today. The case has been made that better services, quicker diagnosis and better understanding can make a major difference to the quality of life of people with fibromyalgia. I want to respond as positively as I can to the issues raised.

“Let me be clear that we want to ensure that people with the condition live as well as possible. Their quality of life is important to all health professionals, particularly Ministers with responsibility for health. I pay tribute to the hard work and dedication of the voluntary sector in helping people with fibromyalgia, especially FibroAction and the Fibromyalgia Association UK. It is important to raise awareness among the medical profession and the public at large, and such organisations have been at the forefront of improving knowledge of this distressing condition.

“As a health professional, I know that it is unnerving to be faced with a patient who knows more about their condition than I do, but in these days of technology, the Internet provides access to wider knowledge and patients feel that they have more autonomy. To receive no response is thus even more frustrating. I totally acknowledge what has been said today, and I am confident that there are people present here who could enlighten us even further.

“There is comprehensive information on the care of people with fibromyalgia specifically for health professionals on NHS Evidence, which is the new web-based portal that provides all health and social care professionals with authoritative clinical and non-clinical evidence and best practice. It provides access to a range of information, including primary research literature, practical implementation tools, guidelines and policy documents,” she said.

The Minister continued, “The NHS Choices website provides information to help put patients in control of their health care. It contains a number of sections that deal with fibromyalgia. There is detailed information on diagnosis, treatment and on living with the condition. NHS Choices has launched a free training programme for health professionals to improve their understanding of all the features available on NHS Choices, including how to direct patients to local services and how to access NHS accredited information about healthy living and conditions.”

Norman Lamb asked the Minister if she would will she speak about ‘choose and book’? Patients can now make choices about where they go and doctors can advise them on what might be best. Will she explore whether the system can guide clinicians to the right specialist services, wherever they are in the country?

Ann Keen admitted this was a valid point. She said she believes that best practice happens in certain areas. As with any new initiative, some places take the reins quicker and more effectively than others.

“We are working towards that being addressed. Hon. Members have mentioned awareness of the condition among GPs and other health professionals. I am sure that all hon. Members are aware that the Department does not specify the content of training curricula. That is done by the royal colleges and is determined by regulatory requirements and the needs of the service. Nevertheless, we expect all health care staff to learn and to get the training and skills that they need to deal with all their patients. Obviously that includes those with fibromyalgia.”

Rob Wilson thanking the Minister for her replies so far said, “I am interested by the NHS Evidence web portal. I believe that it is for health professionals. Is it possible for members of the public or parliamentarians to look at what it advises general practitioners to do so that we have a clear view of the situation?”

Ann Keen said NHS Choices and NHS Evidence are certainly becoming more transparent and open.

“Although we cannot direct the curriculum, we expect all health care staff to get the training and skills that they need. Education and training for health care staff is, and always has been, a priority for the Department of Health. However, we accept that there is room for improvement. As will be obvious from Lord Darzi’s review of the NHS, we are looking at the content of curricula for undergraduate and postgraduate training in health and social care. That is important because of how long-term conditions will be treated in the community in future, as the hon. Member for Guildford (Anne Milton) said. We are looking at this matter, but we cannot dictate it.”

Anne Milton said she appreciated that the Government do not dictate the curricula, and asked, “Does the Minister not accept that there are issues, not only with fibromyalgia, but with many chronic conditions? There is an issue with GPs getting time off to do adequate training. Some GPs need training, but do not volunteer for it. There are issues for other health care staff and for nurses in particular. There can be problems with the ring-fencing of training budgets and with their use to cover shortfalls elsewhere. I am worried that we will slip backwards on training issues because NHS finances are quite tight. That would be a false economy. Money for continuing professional development is vital.”

Ann Keen replied, “That point was well made and it is well taken. The safety and quality that are required in the NHS cannot be provided, nor the professionalism of the health care team maintained, without the knowledge that is required. I am confident that it will be accepted that nurses are at the centre of that team and that they direct it.

“The transparency that we have asked for replaces ring-fencing and is much better than it. We will be able to see where the money is spent and whether education and training are given priority. The settlement for the NHS has been made up to 2010-11. We have always said that investment in education and training is paramount in everything we do, particularly at this difficult time. I should ask the Conservatives whether that investment will continue during the recession under their pledges on NHS funding. Some health professionals are not aware of conditions that may present at their practices in the way that they could and should be. We must correct that situation,” the Minister said.

Norman Lamb said he was grateful for the Minister’s generosity in continuing to give way and he understood that NHS Evidence was a new portal that was developed primarily by NICE. Given that NICE has been fairly unhelpful in its willingness to provide guidance on this condition, he asked if the Minister knew what NHS Evidence says about the treatment of this condition or what advice it gives to GPs? Should that be investigated to ensure that NHS Evidence is giving helpful guidance, he said?

Ann Keen replied that Lord Darzi’s review of the NHS will look at the content of the curricula for undergraduate and postgraduate training in health and social care. Fibromyalgia diagnosis and care will benefit from that work. She hoped that gave reassurance to Members and to sufferers.

“The hon. Member for Reading, East (Rob Wilson) will be aware that in 2003 the Chief Medical Officer issued a newsletter to all doctors in England to raise awareness of the condition and the extent to which it affects the population. We can send out such directives, but it is difficult to monitor how they are received. However, we know that it was well received by patients and health professionals. I have asked officials to look into the feasibility of reporting that exercise. We want to look at what has happened with that exercise since 2003, and to report back, and we are able to repeat that exercise easily, especially given what the Chief Medical Officer has said about pain, which has been acknowledged on both sides of the House today.

“Guidance has been mentioned, particularly the use of NICE guidance in securing improvements and reducing variations in the quality of care. As the hon. Gentleman and others have said, the Fibromyalgia Association UK has asked NICE, as part of its topic selection process, to consider developing clinical guidance on the diagnosis and management of fibromyalgia. Hon. Members have acknowledged the importance of NICE’s independence, but I have also been asked other questions. Both FMA UK and the hon. Gentleman have expressed concern at the slow progress in receiving a response from NICE, and I can confirm that the association has now been informed of the outcome of this topic. I have been asked whether I can intervene. Anyone can write to NICE with a request, but after matters are considered by the panel of experts, they are passed to Ministers for approval, so it is difficult for Ministers to intervene at the beginning of the process.

“In 2006, we launched the musculoskeletal services framework, which sets out guidance to provide high-quality and integrated services for people with musculoskeletal conditions, including fibromyalgia. The framework will help to improve the assessment and diagnosis of, and treatment for, fibromyalgia and other musculoskeletal conditions. It will encourage the giving of more support to help people to manage their own conditions, and it will get across better information and advice. It will also provide a clearer focus on the needs of children and families. The framework also supports an 18-week target for the time from referrals from GPs to the start of hospital treatment.

“Pain is a common, distressing and often disabling symptom in many musculoskeletal conditions, including fibromyalgia. The Department of Health has already supported the work of the NHS on the management of chronic pain through a number of important initiatives, including the musculoskeletal services framework, the 18-week commissioning pathway for the management and treatment of chronic pain, and the NHS Choices website. I must correct the hon. Member for North Norfolk (Norman Lamb) on one point: the development of the 18-week commissioning pathway for pain, in particular, assists commissioners in delivering the appropriate services for their populations. The pathway for chronic pain, which was developed with leading pain clinicians and with the consensus of a wide range of key stakeholders, will help to transform services with examples of good practice. It recommends the use of the brief pain inventory to assess the level and impact of pain, which is an important tool in assessing the patient,” the Minister added.

“I worked for many years as a community and district nurse, and I observed at first hand, when I told patients that their test results had come back negative, the guilt that they experienced for feeling pain when their test was negative. My practice, at all times, was to accept that the patient had the pain that they said they had. Those are the only criteria on which health professionals should operate. These issues are so mixed, especially when psychological aspects are taken into consideration. The fact that some patients are prescribed antidepressants, rather than analgesia, as has been mentioned, shows the need for pain to be managed differently, and I commend the Chief Medical Officer for his statement.

“I recently responded to an Adjournment debate in the main Chamber that had been secured by the chair of the all-party group on chronic pain, my hon. Friend the Member for Aberdeen, South (Miss Begg). I certainly think that the two all-party groups should talk together. On that evening, the chair was supported by the Chronic Pain Policy Coalition, and I met them at the end of the debate to say how important work on pain is. It should not be something that one puts up with; there is a limit. Pain is subjective, and it is important to have the correct measuring tools. I remember that one of the most distressing parts of my work as a practising nurse was to leave someone in pain without having an answer for them—that is no longer acceptable.

“Officials are currently scoping regional events to support the voluntary sector in influencing commissioners to provide better pain services locally, and to engage with professional bodies to raise awareness about chronic pain and about the needs of patients with chronic pain. The development and content of those events is being taken forward with the third sector, and I will ask officials to ensure that fibromyalgia groups are involved in that process. Once again, I thank the hon. Member for Reading, East for bringing this important issue to the attention of the House, and particularly for the manner in which he has done so.”

EDITOR’S NOTE: My apologies for the length of this report but it is almost a full transcript of the 75 minutes debate actioned by the chairman of the All Party Parliamentary Group (APPG) for Fibromyalgia, MP Rob Wilson. Said to be the first ever fibromyalgia debate in Parliament (Westminster Hall) this was a historic event which is why I have run the story at length.

I am sure you will recognise many things that have been said and it is good that the national organisation, FMA UK, has been acknowledged. Personally I feel without ‘gentle persuasion’ by Jean Turner, FMA UK Trustee, and Rob’s constituent, this might not have happened. Well done Jean T. You did a grand job. All we want now is some results.

It appeared to me that on the whole the Minister, as a health professional, had every sympathy with the requests for change and support for FMS. However I could not help but feel her hands were tied. For this reason we must keep up the pressure – raising awareness this week for May 12 International Fibromyalgia Awareness Day, and reminding our MPs who missed this debate even though you asked them to attend. This IS much work still to be done.

If you would like to see the 75 minute video, get a stiff drink, sit comfortably and log on to http://www.fibromyalgia-associationuk.org/content/view/385/1/

It would be good to hear your views about the debate? Email me at
jeannehambleton(@)mac.com. Please omit the brackets – I am fighting the cyberspace robots.

My thanks to Hansard and TheyWorkForYou.com as the sources for this helpful information.

FOR MORE HEALTH STORIES SEE http://jeannehambleton77.wordpress.com

MPs DEBATE FIBROMYALGIA IN WESTMINSTER UK TUESDAY MAY 5

From the FMS Global News Desk (UK)

by Jeanne Hambleton Copyright 2009

If you have fibromyalgia you will be interested to hear a debate tomorrow Tuesday May 5, in the Westminster Hall of the Houses of Commons, London.
The debate will be led by Rob Wilson MP, the chairman of the All Party Parliamentary Group for Fibromyalgia in support of people with FMS.

While we have no idea what will be said but a debate about FMS in the ‘corridors of power’ must be worth listening to. This could be almost historical, as I cannot remember such a debate before. This can be viewed worldwide on your computer. With Hansard and the national press attending the debates we could have national newspaper coverage raising more awareness about this rotten invisible disability.

If he had asked me what I would say I would begin – Dear Mr. Wilson please tell the MPs that there are two million of us suffering with this condition. That is the number diagnosed and we believe there are many more with ‘mysterious’ pains that are also fibromyalgia, but their doctors think they are imagining the pain or it is all in their head. Sounds familiar?

We know IT IS REAL. We have been there, done that, got the pain and the tee shirt.

Please mention that the USA claim fibromyalgia is now reaching worldwide epidemic proportions and this condition is for life. Mr. Wilson, Sir, please remind MPs that ME was given £8m for research around about 2006, but those of us with fibromyalgia are still waiting for help. We have no cure. The cause is unknown, our pain is as bad as ME and we too need funding for research.

What is £8m the way the Government is spending money at the moment. I am sure Mr. B would not even miss it but it would certainly help us.

We have pains 24/7, chronic fatigue, sleep disorders, cognitive problems, not to mention IBS and RLS, gastric problems, headaches, dizziness, and many more.

The debate, you should really listen to, starts at 9.30am in Westminster Hall tomorrow May 5 and lasts until 11am. As we do not do mornings – cannot get out of our own way and stumble all over the place first thing – we will probably still be in our dressing gowns enjoying a good cup of coffee, or tea – what ever is your tipple. Just switch on your computer. Then log into

http://www.parliamentlive.tv/Main/Live.aspx

Once on the site click the date May 5 and you are offered a list of four debating areas. You need bottom left, Westminster Hall, and then click Rob Wilson – support for people with fibromyalgia. I hope you can listen to everything that is said… fingers crossed.

If you have not checked in and read this article before 9.30am British Summer Time on Tuesday May 5 I am told this is recorded and can be found on this site after the debate.

You will need to search for Fibromyalgia, Private Members’ Debate: Westminster Hall May 5 at 9.30am – support for people with fibromyalgia – Mr. Rob Wilson MP.

HUGE NUMBER OF LISTENERS

FMA UK, the national Fibromyalgia Association has notified over 100 groups and it is thought the programme will attract a big audience.

Jean Turner, one of the FMA UK Trustees writing to members said, “This is fantastic news and we are grateful to Rob and fellow MPs for offering to take our concerns and raise awareness of fibromyalgia.

“If your MP has been supportive to our cause in the past, please let him know about the debate and ask him to attend and give his support.

“Please use this opportunity to contact your MP. I am sure we can actually reach every single one. They have all been contacted by us in the past so are well aware of fibromyalgia. Let us raise the profile by just one little telephone call to your local MP’s office, it is as easy as that.”

INTERNATIONAL FIBROMYALGIA AWARENESS DAY MAY 12

The debate comes a few days before International Fibromyalgia Awareness Day on Tuesday May 12. This is also Florence Nightingale’s birthday. She was the inspiration for this international event. After her work in the Crimean War she became very ill and it is said she was bed ridden for the rest of her life. It is now thought she had fibromyalgia and chronic fatigue.

People with fibromyalgia all over the world unite together on this day to proclaim the international awareness day. They successfully raise awareness and funds for research selling the only FMS CD Fibro What? This is a comedy CD by Dom Collins with a serious fibromyalgia song and three very funny tunes to make the family laugh.

This May 12 trustees of FMA UK and folk with fibromyalgia from all over the UK will be meeting Rob Wilson MP and other MPs supporting the condition in Westminster to commemorate the international event.

If you have any comments about the debate or need information about the Fibro What CD do email me. I would love to hear from you.
Email jeannehambleton(@)mac.com.

MAY 12 LAUNCH NEW MILTON KEYNES SUPPORT GROUP

OR WHAT DO RUNNER BEANS HAVE TO DO WITH FIBROMYALGIA?

Making the most of the International Fibromyalgia Awareness Day, Ali Burbridge, the new Group Leader, of the first Milton Keynes FMS Support Group, is launching her support on that day. On her posters she asked, “Have you been diagnosed with fibromyalgia or do you know someone that has and who does not know where to turn? Do you want to speak with someone that understands and has this ‘invisible’ illness?”

Well Ali is the one to talk to. Email her at alimkfms@hotmail.co.uk or ring her on 0845 428 2027 for MKFMSG.

If you want to get in her good books, ask her about the runner beans… I am not joking… this is serious stuff. What do runner beans have to do with fibromyalgia? That is a good question. That has got your guessing. I am not telling. You will have to go the meeting or contact Ali…he he he.

Enjoy the live debate. Talk soon Jeanne

FOR MORE HEALTH STORIES SEE http://jeannehambleton77.wordpress.com

Still no treatment in Europe for the 14 million FMS patients trapped in pain!

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

Press Release from ENFA – 29.04.2009

Brussels, (29.04.2009)

Last week was high on activities for the Fibromyalgia community, on one hand the European Network of Fibromyalgia Associations (ENFA) met with the European Health Commissioner Ms Androulla Vassiliou1. And on the other hand the European Medicines Agency (EMEA) gave another negative decision for a treatment for fibromyalgia in Europe2.

Ms. Pam Stewart, Vice-President of European Network of Fibromyalgia Associations (ENFA) and chairman of the trustees of Fibromyalgia Association UK, said one of the biggest challenges that the patients have been facing is the lack of officially recognised medical treatment options in the European Union.

By comparison there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest and Cypress (Pierre Fabre).

Last October, Cymbalta received a negative decision from the EMEA and last week was the turn of Lyrica said Ms Stewart. One dossier is still remaining to be evaluated by the EMEA: Savella. Each of these drugs has a limited success and judged alone leads to their failure to get approval.

However with a full range of treatment options, more people with fibromyalgia could have reduced levels of pain. This could enable them to embark on a management programme to significantly improve their quality of life said the Vice President.

“We are constantly hearing from people diagnosed with fibromyalgia that their doctor tells them there is no treatment because no approved guidelines or medications are available. Medical professionals that do not have time to research treatment options should have clearly signposted guidelines for effective treatment options. No one should be sentenced to a life of pain, she said.

“Patients across Europe are currently using these medicines off label. However, the European Medicines Agency told European Network of Fibromyalgia Associations that this is a common situation already faced in other disease areas such as cancer, and the situation with off label use cannot be taken into consideration in the assessment of medicines for which a marketing authorisation is sought.

“The difference with Fibromyalgia is that patients in the UK, for example, are unlikely to be prescribed any of these effective drugs because they have not been officially approved for Fibromyalgia. Patients are left with inadequate treatment options and although these drugs can be purchased over the Internet, this means their use is not monitored and people could be at the mercy of unscrupulous suppliers, which could put their lives at risk,” said Ms. Stewart.

Another example, coming from Germany, concerns the social status of patients since they are labeled as “depressive patient” for their life insurance or health insurance in order to have their drugs fully reimbursed by the National Health Insurance. In order to get any effective medicines, doctors should not diagnose fibromyalgia at all because the medicines are not indicated for fibromyalgia.

At the same time, an ENFA delegation was meeting with the European Health Commissioner Ms. Vassiliou. The meeting was only a natural step, concluding ENFA’s activities on the ‘European Institutions Fibromyalgia Awareness Campaign’ launched in 2008 on World Fibromyalgia Day.

Since the commencement of the campaign last May, with the support from 418 Members of the European Parliament, the Written Declaration on Fibromyalgia was adopted by the European Parliament in December 2008. The written declaration was necessary to raise awareness to all the European politicians from the 27 member states. It also helps create a mapping of the disease status disparity across Europe and increase awareness of better diagnosis and treatment.

“However, we realised that without any officially approved treatment options available, it was almost impossible to properly raise awareness of Fibromyalgia. The patient petition with over 27,000 signatures from all over Europe that MEP Adamou voluntarily hand delivered to the Health Commissioner, clearly demonstrates the frustration from the fibromyalgia community and strong and urgent needs to have treatment options to be officially available. The Fibromyalgia community is left with one hope to see maybe Savella drug approved before the summer. But unfortunately, the hope for a multiple choice of treatment in Europe seems to be lost.

“The European Network of Fibromyalgia Associations and all its associations have for years raised awareness on Fibromyalgia among national and European politicians, health professionals and the general public, and will keep on being active as long as it is necessary,” the Vice President.

About ENFA

ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see Fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

About Fibromyalgia

Fibromyalgia is a complex disease with chronic widespread pain as the defining symptom and various additional symptoms including fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Fibromyalgia imposes a large economic burden on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments.

In fact, a Dutch study in 2005 estimated that the average annual cost of fibromyalgia was €980 million in the Netherlands. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

For more information on the European Network of Fibromyalgia Associations (ENFA) contact Ms. Pam Stewart Vice-President of ENFA Brussels@enfa-europe.eu; http://www.enfa-europe.eu.
1 On Wednesday 22 April in Strasbourg, for more information visit http://www.enfa-europe.eu; 2 On Thursday 23 April in London, for more information visit http://www.emea.europa.eu

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.

WOMEN IN NETS CLAIMING TO BE TRAPPED IN PAIN IN 8 EUROPEAN CITIES

From the Fibromyalgia News Desk of Jeanne Hambleton

PRESS RELEASE Embargoed until 7.3.09

Brussels, (07.03.2009) – This Saturday has not only been marked by the International Women’s Day but also by the European action day on Fibromyalgia. While normal people were doing their usual Saturday’s shopping, the European Network of Fibromyalgia Associations and its Member Associations gathered together in eight European cities centres to expose their situation as women-patients suffering from fibromyalgia.

Simultaneously at 16:00 (Brussels time) in Paris, London, Amsterdam, Frankfurt, Brussels, Dublin, Milan, Lisbon and Madrid a passive demonstration took place where fibromyalgia community members trod the pavements of these cities.

The actual main issue around Fibromyalgia is that currently in Europe there is no recognized treatment whereas in the USA there are already 3 medicines available.

“This year has been declared the year against fibromyalgia by the European arm of the International Association for the Study of Pain (IASP-EFIC) and for this reason ENFA, as the European umbrella of fibromyalgia organisations wish to inform as much as possible not only diagnosed patients, but the general public, medical professionals, policy makers and politicians” says Pam Stewart, ENFA’s vice-president.

“Early diagnosis, diagnosis, treatments and information are still lacking for the estimated 14 million patients in Europe” says Robert Boelhouwer, ENFA’s president. “We have to keep on mobilizing the general public but also the politicians by having regular action days and awareness campaigns. This is the first event in 2009; the next one will take place in May on the occasion of the “International Fibromyalgia Awareness Day”, then in September and October. We will keep on fighting until we get a full and clear recognition of our disease, starting with a treatment approved for Europe,” he added.

Last December, 418 Members of the European Parliament from the 27 European countries expressed their wish to the European Commission and to the Member States to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia. The European Parliament has been the first European Institution to answer the call of the fibromyalgia community. The European Commission has been also recently been contacted but no reaction has came from them yet.

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

Fibromyalgia imposes large economic burdens on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

Contact:Mr. Robert Boelhouwer President European Network of Fibromyalgia Associations (ENFA)
ENFA contact@enfa-europe.eu – http://www.enfa-europe.eu

Fibrobenefit – E-petition response

From the FMS Global News Desk of Jeanne Hambleton

I received this email from the Prime Minister’s Office at No.10 Downing Street, London, UK, today -

You signed a petition asking the Prime Minister to “Ease the pressure on
fibromyalgia sufferers and the benefits system including medical
assistance” - http://petitions.number10.gov.uk/Fibrobenefit/

“We the undersigned petition the Prime Minister to ease the pressure on fibromyalgia sufferers and the benefits system including medical assistance.”

“Gordon We ask for easier access to benefits within the DWP, Fibromyalgia sufferers are being pressured to produce too much evidence also, we are being asked to attend too many back to work pressure initiatives which compounded with excessive form filling causes flare-ups which does not allow us suitable calm to balance our condition which as you know has no cure. A Fibromyalgia sufferer would be happy to get out and about, work would be seen by many of us as a luxury, we really do not need to be pressured or lead before we are ready. Cheers for now Mark Manzie on behalf of those who suffer.”

Launched by Lisa Manzie, the petition ended in December with JUST 302 signatures.

Read the Government’s response

Thank you for signing this epetition and raising the concerns of Fibromyalgia sufferers in relation access to benefits and the work capability assessment.

The Work Capability Assessment

Individuals applying for Employment and Support Allowance will be asked to undertake a Work Capability Assessment. This is carried out by an independent healthcare professional, who assesses an individual’s functional capability. They then provide advice for a decision maker within the Department on the individual’s limited capability for work and limited capability for work related activity.

The Work Capability Assessment does not simply assess an individual’s capability on that day, but will take account of fluctuations in their condition. The healthcare professional will assess whether an individual is capable of carrying out an activity reliably and repeatedly the majority of the time. If this is not the case, then they are considered unable to carry it out at all. The advice which the healthcare professional provides to the decision maker therefore accurately reflects fluctuations in an individual’s condition, with respect to their frequency and duration.

Fluctuations are also accounted for in the provision of support. For example personal advisers are able to defer work-focused interviews where a claimant is too ill to participate at that time. In this way, Employment and Support Allowance operates as a personalised benefit, tailoring support to the individual.

The Work Capability Assessment focuses on the effect a person’s condition has on their capability for work, not on the condition itself.

Work-focused Interviews

Customers in receipt of a working age Jobcentre Plus benefit e.g. Incapacity Benefit or Employment and Support Allowance are required by law to attend a Work Focused Interview as a condition of continued entitlement to the full amount of benefit. However, where there is reason to believe that the customer would not benefit from the interview at the current time it may be deferred for a short period. Any deferral decision is made on an individual basis, takes account of the customer’s particular circumstances including the effect a person’s condition has on those circumstances, not on the condition itself and is at the discretion of the adviser.

The purpose of the Work Focused Interview is to help a customer identify appropriate job goals and establish what assistance is required to achieve them. The adviser works with the customer to agree an Action Plan. They would not expect the customer to participate in any activity until they were ready. One outcome may be attendance on a Condition Management Programme. The aim of the Condition Management Programme is to educate, support and advise customers on how best to manage their condition and to improve their functional ability.

For Incapacity Benefit or Employment and Support Allowance customers, these interviews are conducted through the Pathways to Work Service which is specifically designed for people with a disability or health condition.

SHARE YOUR EXPERIENCE

What are your experiences? How did you do with your assessment? Tell me your ‘horror’ stories – let us talk. I need your name and email address and the town where you live – but will only print your first name and the town. Subject matter please – BENEFITS & No.10. Please share with us – it could help others.

If you are launching an e-petition about fibromyalgia please tell me and I will sign it, tell my friends and hopefully they will tell theirs. A mere 302 signatures out of at least 2 million fibromyalgia sufferers is a poor show – you must agree!

Okay so you did not know about this e-petition and some folks do not have access to the Internet, but I am trying to make changes –

email me at fmsglobalnews@me.com

with your e-petition link. It is over to you – we are all fighting the same battle – recognition – awareness and some funding from the Government for research.

SO YOU WANT TO DO YOUR OWN E-PETITION

How do you launch an e-petition? For UK residents only – log on to

http://petitions.number10.gov.uk/

It is really quite simple but you will be asked to consider if your message has already been printed on this website. This may mean some minor changes to your petition title and wording. It is a good idea to search for ‘fibromyalgia’ on the website before you finalise your e-petition.

Prepare the message on your desktop so you can spellcheck, cut and paste. Consider how long you want the e-petition to be active. You will need a closing date and their response will be sent to you automatically. Make a note of the website link address. Finally if you do not tell everyone about your e-petition, they will not sign it.

Add the e-petition link at the bottom of every email you send out, asking for support and please tell me. If you belong to a group make sure they know. Send details to the FMA UK website (www.fibromyalgia-associationuk.org/) and announce details on any forum you belong to.

You need 1,000s of signatures for any real impact although it appears they answer your petition with just 302 people signing.

Good luck and do not forget to let me know please – Jeanne at

fmsglobalnews@me.com

TELL YOUR MP

Why not send it to your MP? Who is he? Log on to

http://www.theyworkforyou.com/ with your post code

You can search for his/her postal address, email or whatever and send the link asking for your question to be raised by him in the House. They are back after half term from February 23rd. A fairly safe bet for an email address is surnameinitial@parliament.uk. There are exceptions but this works most of the time.

If this produces some exciting results from your MP and No. 10 do let me know. News is my business and I am doing this for the late News Editor Rick Usher – read About FMS Global News 2009 (top of the page). It is all voluntary I should add. Talk soon. Jeanne

Please excuse any typos – I do try but sadly fibro fog gets in the way…..

EU COMMISSIONER FOR HEALTH ANSWERS QUESTIONS ON FIBROMYALGIA

From the News Desk of Jeanne Hambleton

 

I have just received the following Q&A information. While this is not a recent conversation, it is evidence that fibromyalgia is being discussed in the Europe.

 

EU QUESTIONS AND ANSWERS

 

On 28 October 2008, European Commissioner for Health, Ms Androulla Vassiliou answered questions put to her by EU member Mr. Florin Popa  (Romania) on EU recognition for fibromyalgia, the need for treatments in Europe for fibromyalgia and the need for more data from research. 

 

QUESTION:

Can the Commission state its position on fibromyalgia, as the WHO did in 1992? Does the Commission think that there is a need for action at European level, in the interests of European citizens, in order to avoid the disparities in diagnoses and treatment that exist in all Member States?

ANSWER:

In accordance with the Treaties, the benefits that Member States provide under their health systems and the conditions applicable are up to Member States to determine, including with regard to the benefits and treatments provided for specific conditions such as fibromyalgia.

QUESTION:

Can the Commission comment on the lack of availability of approved treatments in the EU for fibromyalgia? Millions of people suffering from fibromyalgia across Europe do not have the same access to medicines to treat fibromyalgia as in the US. Following its October meeting, the Committee for Medicinal Products for Human Use (CHMP) took a negative decision regarding the first medicine for the treatment of fibromyalgia in Europe. Patients across Europe were disappointed to hear that a license to approve a drug for fibromyalgia had not been granted. Yet the reality is that in Europe patients are taking medicines off-label. What solution does the Commission see for this specific problem?

ANSWER:

The fact that the Committee for Medicinal Products for Human Use (CHMP) proposed a negative decision regarding the market authorisation of a medicine for the treatment of fibromyalgia in Europe does not preclude future authorisation of other proprietary medicines that meet the safety, efficacy and quality requirements laid down in EU legislation.

QUESTION:

In order to obtain a treatment for fibromyalgia, there is a need to collect EU data. Can the Commission help collect and receive data and also help with the coordination of national expertise?

ANSWER:

The Commission already pointed out that under the current health programme 2008‑13 a proposal for surveillance of and information on musculoskeletal diseases, including fibromyalgia, has been selected and a contract is under negotiation. This project, if the contract can finally be successfully concluded, is expected to contribute to improvement of European data on incidence and prevalence of fibromyalgia as well as information on best practice of diagnosis, treatment and care.

BACKGROUND

 

European Commissioner for Health, Ms Androulla Vassiliou on her website said she was honored to have the opportunity to work on issues which  ‘intimately touches EU citizens’ everyday lives”.

 

She writes, “As Commissioner for Health, my portfolio covers three broad areas: public health, feed and food safety and animal health and welfare. Many challenges lie ahead. We need, for example to improve the legal certainty on patients’ rights in cross border health care, to contribute to reducing organ donation shortages, to help combat rare disease in the field of public health or to implement a comprehensive strategy on animal health. 

I know I can count on the dedication of my services working in the Directorate-General for Health and Consumers and I look forward to a close co-operation with national authorities in the Member States. 
On my side, I will put all my energy into addressing these important issues. 
 Working on health at EU level can bring about results that can not so easily be achieved by Member States working alone.”

 

(http://ec.europa.eu/commission_barroso/vassiliou/index_en.htm)

 

There is a contact box on this website if you have any questions. I could find no references to fibromyalgia. Might have been fibro fog on my part? JH

 

Mr. Florin Popa, EU Member (Romania) was one of the five MEPs active in health issues at the European Parliament, who helped to initiate the Written Declaration relating to fibromyalgia in conjunction with the European Networks of Fibromyalgia Associations.

 

EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS

Press Release


Members of the European Parliament (MEPs) adopt written declaration 69/2008 on fibromyalgia initiated by five deputies and the European Network of Fibromyalgia Associations (ENFA).

Brussels 16.12.2008 – Written Declaration 69/2008 on fibromyalgia has been a success in the European Parliament by finding the necessary quorum of signatories of 393 deputies giving their support. The Written Declaration was initiated by five key MEPs active on health at the European Parliament: Mr. Adamou, Ms. Brepoels, Ms. Dickuté, Mr. Popa and Ms. Sinnott. These MEPs decided to launch the declaration during the celebratory meeting of the 1st European Fibromyalgia Awareness Day in May 2008, organized by ENFA.

The Written Declaration is calling on the European Union to recognize fibromyalgia in Europe as a disease, as WHO did in 1992. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87% of total prevalence).

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

 

Fibromyalgia imposes large economic burdens on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost workdays, lost income and disability payments.

 

Research in the UK has shown that diagnosis and positive management of fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

Thus, the European Parliament is calling through this declaration, for the European Commission and the Council, to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia.

 

Educating healthcare professionals, patients and the public to promote better understanding and management of fibromyalgia will benefit patients, healthcare providers and the society. A Written Declaration is a text of up to 200 words on a matter falling within the European Union’s sphere of activities. MEPs can use them in order to launch or relaunch a debate on a subject that comes within the EU’s remit. At the end of the lapsing date (3 months after its launch on 1 September for the declaration 69/2008, the declaration is forwarded to the institutions named in the text, together with the names of the signatories.

 

Thank You MEP’s, Thank you fibromyalgia supporters!

The written declaration 69/2008 about fibromyalgia reached the quotum on December16th 2008, to be accepted by the European Parliament. This acceptance means that the first but important step on a long way to get fibromyalgia recognised in all the European countries, has been taken.

The awareness of the condition of fibromyalgia by the members of the European Parliament could be an example for national politicians for actively addressing their national governments. ENFA and their members are more than willing to support such activities.