Petition demands fibromyalgia test be fit to work

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The Department for Work and Pensions is being told to sort out its benefit assessment system after campaigners said it is rigged against people who suffer from Fibromyalgia.

The petition – ‘Change DWP Medicals for Fibromyalgia’ – may be found here.

Long-term readers will know that Fibromyalgia is one of the conditions suffered by Mrs Mike, partner of Vox Political writer Mike Sivier. She has hijacked this space to post the following message from the petitioners:

“In brief, the petition asks that Department of Work and Pensions medicals for Fibromyalgia be carried out by a qualified rheumatologist, and that the decision regarding the receipt of benefits not be based on the current point-scoring system.

“The full petition reads:

“‘We, the undersigned, call on the British Government to ask that DWP medicals for Fibromyalgia be carried out by a qualified rheumatologist, and that the decision made about the receipt of benefit not be based on a point scoring system.’

“‘At the moment the DWP are using an outside agency to carry out medicals on people with medical conditions, and using a point scoring system to decide whether or not people are entitled to benefits.

“‘Most of the medicals are carried out by a nurse or other healthcare professional in less than an hour by asking a few targeted questions. With a condition like Fibromyalgia, it takes a qualified rheumatologist to diagnose the condition and understand the treatment that needs to be implemented to attempt to manage the pain of the condition.

“‘A rheumatologist would understand the pain and associated problems that Fibromyalgia sufferers face on a daily basis. Yet the nurse or health care professional that fills in the forms for the medical sees someone for less than an hour with no understanding of the condition and how it affects each person individually.

“‘It is not possible for someone of this level to understand the issues that Fibromyalgia suffers face, and the medicals should at the very least be carried out by a rheumatologist.

“‘During the medical you are assessed on how much you can move in certain directions. At no point are they taking any interest in how much pain you are in whilst this is going on, or how many painkillers you have to take afterwards.

“‘A favourite question is, “How far can you walk without discomfort?” The answer for a most Fibromyalgia sufferers is over 200 metres if they absolutely have to. What they don’t ask is, “How much pain are you in?” Most Fibromyalgia sufferers are in pain before they start to walk; walking just increases the pain.

“‘The point scoring system is stupid and unfair and needs to be abolished. Fibromyalgia sufferers are being consistently turned down for benefits that they should be entitled to, as this is a condition recognised by the DWP – and I quote, “Professor Aylward, on behalf of the DWP, reaffirmed that the DWP recognises fibromyalgia as a real and disabling condition, and not just something that is ‘all in the mind.'” If this is recognised by the DWP as being a “real and disabling condition” then why are diagnosed sufferers being refused DLA and ESA?

“‘It has been reported that Fibromyalgia Sufferers often suffer more pain than people diagnosed with rheumatoid arthritis.

“‘Despite the DWP’s statement, Fibromyalgia sufferers are being discriminated against, as the condition is seen as “invisible”, like many other conditions.'”

To sign the petition, go to this site and click the “Sign the petition” button near the bottom of the page. For more Fibromyalgia, Chronic Fatigue Syndrome and Natural Wellness news, sign up for free HealthWatch newsletters.

That’s the end of Mrs Mike’s bit. As someone who lives with a person who has Fibromyalgia, dear reader, you may safely conclude that I know a fair few things about the subject myself. I sat in on Mrs Mike’s work capability assessment and I can vouch for the truth of the statements regarding questions asked during that interview and the physical examinations that take place.

Mrs Mike’s mobility was checked very thoroughly during her assessment but no interest has ever been shown in the fact that she spent the next three days on the sofa in our living room, unable to move because of the pain she was suffering.

The question about walking is far more subjective. Obviously, after the WCA, Mrs Mike couldn’t walk anywhere without discomfort but, even when she is well enough to move, pain always sets in within a few paces and the chance to sit down is regarded as a blessed relief.

Yet Mansel Aylward (for it was he) said the DWP recognises Fibromyalgia as a “real and disabling condition”.

While these tests are carried out by people who are not qualified to recognise the symptoms of the condition and the problems it causes, the DWP is only paying lip-service to its claims about Fibromyalgia.

Please sign the petition and help ease the lives of people with Fibromyalgia across the UK.

Follow me on Twitter: @MidWalesMike

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34 Comments

  1. Editor April 14, 2014 at 8:30 pm - Reply

    Reblogged this on kickingthecat.

  2. Sarah April 14, 2014 at 8:37 pm - Reply

    Signed.
    I learned about fibromyalgia through this blog:
    http://playingthehandiwasdealt.wordpress.com/about/

  3. Ulysses April 14, 2014 at 9:16 pm - Reply

    Signed

  4. jaypot2012 April 14, 2014 at 9:54 pm - Reply

    Reblogged this on Jay's Journal and commented:
    Sign and share please.

  5. […] Petition demands fibromyalgia test be fit to work. […]

  6. jaynel62 April 15, 2014 at 4:54 am - Reply

    Reblogged this on jaynelinney and commented:
    Having 20 years experience living with Fibro – this petition is welcome beyond words – Thanks Mike; for another excellent find

  7. socialaction2014 April 15, 2014 at 5:33 am - Reply

    Reblogged this on Social Action.

  8. beastrabban April 15, 2014 at 5:41 am - Reply

    Reblogged this on Beastrabban’s Weblog.

  9. beastrabban April 15, 2014 at 5:41 am - Reply

    I’ve also signed, Mike. Best wishes to you and Mrs Mike.

  10. prayerwarriorpsychicnot April 15, 2014 at 5:45 am - Reply

    Good article. This applies to all serious medical conditions really. It is not about pushing ill people into work when there isn’t even work for the able-bodied. Just balderdash to hide pushing ill people off benefits. We work a large proportion of our year just to pay taxes – and pay taxes for decades. If we don’t get pay back when it is needed the govt is just stealing our money.
    The work test is idiotic. No employer is going to take on anyone who is less than 100 percent fit when workers outnumber jobs. When my arthritis was bad sometimes I could walk across the room, sometimes I couldn’t. I couldn’t carry anything, reach the floor, reach above my head, get up from a low chair, carry anything without risk of dropping it, or walk with the certainty that a whole muscle set should arbitrarily stop working, causing me to fall. I could really see an employer in a hurry to employ me – and my problem is mild in comparison with other medical conditions.
    (For fibromyalgia does rosehip 7,500mg a day work? It helps osteo and rheumatoid arthritis).

  11. prayerwarriorpsychicnot April 15, 2014 at 5:46 am - Reply

    Reblogged this on Citizens, not serfs.

  12. Barry Davies April 15, 2014 at 8:48 am - Reply

    I have to agree as someone who has M.E. I sat at the tribunal and they went through the WCA questions after which they asked why I was appealing as I clearly didn’t have the points, my answer was that the WCA was to narrow and didn’t take into account all the aspects that actually prevent people from working, and that as I had 2 consultants 3gp’s and 2 atos doctors who had all examined me saying I can’t work, why should a nurse who had never met me sitting in front of a computer screen be able to overrule the Experts. I was put back in the Work related group but not the support group where I should be, but the system is very much stacked against us.

  13. amnesiaclinic April 15, 2014 at 10:20 am - Reply

    Reblogged this on amnesiaclinic and commented:
    Please support and share. Having gone through this with my son suffering ME I fully endorse all the comments. Excellent people are standing up and fighting. Brilliant!! xxx

  14. Florence April 15, 2014 at 10:28 am - Reply

    For anyone reading this, please sign the petition, as the way the WCA is being run, the many thousands of FM sufferers (and arthritis and other chronic pain syndrome, such as phantom limb) fit the neat criteria for the DWP to get as many people off benefits whatever the cost ultimately to the individual and the economy.

    Fibromyalgia is a devilish disease. Only since the use of functional MRI (fMRI) has it been proven to be an actual physical problem – the brain feels 12x more pain than in non-FM brains. There is no real treatment beyond pacing (to avoid getting into severe difficulties) and pain relief, which has it’s own dangers. There is also the problem of co-morbidity with various forms of arthritis, and other inflammatory diseases. This is specialist stuff, not to be judged by a tick-box paramedic paid by results.

    The old DLA PCA (I never thought I’d feel nostalgic!) did allow for the inclusion of pain in descriptors, so that being in constant pain meant that distance walked and ability to repeat actions pain-free was zero, and qualified for full mobility allowance,

    Chronic pain is a constant torture. Physically, because every movement hurts and hurts more cumulatively, and leaves you broken for days at a time, Psychologically it is crushing, as anyone will tell you, they would LOVE to be able to work, or to cook a meal, or to get dressed unaided even. Sitting or lying in zombie pain-med state, unable to move for days on end is a living hell, a life that stands aside while the world happens around you. To add to that more pain by insisting that you are fit to work, so being deprived of any means of support, is TORTURE, and needs to stop NOW.

  15. janxhamiltonj April 15, 2014 at 3:13 pm - Reply

    signed and shared where i can, i aslo suffer from fibro and it;s associated “friends”. plus arthritis and Thyroid eye disease. .On the assessments i have attended, none have a clue whatsoever about my eye disease and it’s limitations, let alone anything else.

  16. Alan April 15, 2014 at 3:30 pm - Reply

    My wife suffers from this also, we have both signed and shared

  17. Niki April 15, 2014 at 5:11 pm - Reply

    I don’t have Fibro but suffer from some similar elements, but I would argue that the WCA is not fit for any purpose. It’s certainly no use for chronic neurological pa syndromes.

    I’ll sign the petition as any thing that challenged ths WCA is good!!!

  18. Clutter April 16, 2014 at 12:15 pm - Reply

    For a year I was unable to lift my arms to comb my hair, screamed with pain if I tried to adjust a pillow whilst lying down, couldn’t fit a fitted sheet and could barely walk due to neck, back and leg pain, until I was 90% bedridden. Fibro, diagnosed by thyroid surgeon and endocrinologist, was a misdiagnosis, my problems were due to thyroxine toxicity. Nevertheless, I would probably have sailed through the Atos test. The test is wrong on so many levels by overruling GP and consultants diagnosis and not being fit for people with fluctuating physical and mental conditions. I’m happy to sign the petition and hope it will succeed.

    • Mike Sivier April 16, 2014 at 12:19 pm - Reply

      What’s thyroxine toxicity?

      • Barry Davies April 16, 2014 at 1:18 pm - Reply

        Hyperthyroidism you usually get a goitre with it which is the first sign a Doctor sees when you go to see him.

      • Clutter April 16, 2014 at 4:50 pm - Reply

        Build up of thyroxine from being over replaced with Levothyroxine following surgery for thyroid cancer. Over replacement is used to prevent recurrence. The build up led to suggested diagnoses of fibro and COPD and a host of very unpleasant and debilitating side effects. I was convinced the Levo was responsible for my symptoms but wasn’t listened to by the endocrinologists so proved it by stopping thyroid meds for several weeks. Improvement was fast and continued as meds left my system but resumed when I restarted Levothyroxine. Endo finally agreed to prescribe a combination of Levothyroxine and Liothyronine in February and I’m now recovering slowly, but surely. Bitter about 18 wasted and painful months though.

      • Clutter April 16, 2014 at 4:56 pm - Reply

        Goiter doesn’t always present with hyperthyroidism, Barry. I had spiralling Hashimoto’s and swung from hyper to hypothyroid and back but wasn’t diagnosed until I got the thyroid cancer diagnosis. It was the medication wot dun fer me :(

      • Barry Davies April 16, 2014 at 5:22 pm - Reply

        No if you were fluctuating between hypo and hype the goitre either doesn’t ensue or is relatively small.

        • Clutter April 16, 2014 at 7:23 pm - Reply

          Even so, not everyone with hyperthyroidism will get a goiter. My mother did plus she had thyroid eye disease, sister didn’t but she also has thyroid eye disease. Both had Graves disease.

  19. Damien Willey April 16, 2014 at 9:21 pm - Reply

    As a carer for a fibro sufferer as well, this is welcome news. I’ve also sat in on those WCA’s. its a vile, degrading and just plain pointless exercise in terrorising the vulnerable

  20. stewilko April 24, 2014 at 8:38 pm - Reply

    Reblogged this on stewilko's Blog.

  21. Jude April 29, 2014 at 7:54 am - Reply

    I totally agree that the DWP assessment process needs to change, I have also experienced it with my eldest daughter who suffers from M.E/ CFS. However, I do not think it is the professional undertaking the assessment that needs to change but the process itself, a restrictive questionnaire is currently used that takes no account of anything other than exactly what it asks, the health care professional’s opinion on the patient’s suffering is not asked for, it is purely a tick box system designed in such a way to eliminate almost the entire population of chronically ill from being entitled to the benefits they need. I walked out of the assessment feeling that my daughter would have fulfilled the criteria only if she had no arms or legs and only partial sight. Of course, her application was denied.

  22. Greywolf April 29, 2014 at 8:33 am - Reply

    As a sufferer of FMS and a carer for a husband with epilepsy, I agree more needs to be done to help ALL of us who suffer with hidden illnesses and disabilities.
    Please read this web page as it has such a simple explanation to those who don’t suffer of everyone’s illness/disability: it’s simply called ‘The Spoon Theory’
    http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

  23. jonathan morris April 29, 2014 at 9:41 am - Reply

    signed

  24. nicola parker April 29, 2014 at 11:50 am - Reply

    I’ve suffered fibro for five years and i haven’t applied to dwp due to the amount of people who have been turned down. We live in constant pain we might look like any healthy person but our bodies feel like we’ve been hit by a train… Signed and shared

  25. Lewis April 30, 2014 at 10:37 am - Reply

    signed

  26. Sheogorath July 13, 2014 at 5:22 pm - Reply

    Update: Unum have persuaded the ConDems to deny the existence of fibromatosis based on the similarity of its name to that of fibromyalgia.

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