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

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About jeanne hambleton

Journalist-wordsmith, former reporter, columnist, film critic, editor, Town Clerk and then fibromite and eventer with 5 conferences done and dusted. Interested in all health and well being issues, passionate about research to find a cure and cause for fibromyalgia. Member LinkedIn. Worked for 4 years with FMA UK as Regional Coordinator for SW and SE,and Chair for FMS SAS the Sussex and Surrey FM umbrella charity and Chair Folly Pogs Fibromyalgia Research UK - finding funding for our "cause for a cure" and President and co ordinator of National FM Conferences. Just finished last national annual Fibromyalgia Conference Weekend. This was another success with speakers from the States . Next year's conference in Chichester Park Hotel, West Sussex, will be April 24/27 2015 and bookings are coming in from those who raved about the event every year. I am very busy but happy to produce articles for publication. News Editor of FMS Global News on line but a bit behind due to conference. A workaholic beyond redemption! The future - who knows? Open to offers with payment. Versatile and looking for a regular paid column - you call the tune and I will play the pipes.
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