Petition for DWP to recognize Fibromy... - Fibromyalgia Acti...
Petition for DWP to recognize Fibromyalgia and CFS
Done x
Done
Done x
Did this a few days ago. Brilliant idea.
Done!
Done!x
done
OP, I don't understand ........ my last DLA app ended up with me having a very productive chat on the phone with the DM who had handled my application for renewal. He said they get about 100 fibromyalgia cases a week, that it IS recognised, and they also recognise how erratic the condition can be, and how severely debilitating it can be.
Is it only my local bit of DWP that recognises fibro? How could that be? I would have thought that if it's recognised in the sticks, it would be recognised everywhere.
xXx
Hi
I have had a quick look and have seen that DWP "say they do recognise fibro" but i ma not convinced that it is taken as seriously as it should be and the outcome of and medical assessment can vary greatly dependent on the Health Care Practitioners knowledge, beliefs on fibro. I would say you have been extremely lucky in your experience and outcome as many are being found fit for work.........When they clearly are not.
The E Petition states it is to " recognise Fibromyalgia and Chronic Fatigue Syndrome as seriously debilitating illnesses as per the World Health Organisation's Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10)."
Now i can only assume that the World Health Organisation have set down a set of guidelines for fibro and it is to try and have them recognised by the DWP and Atos so as they are used in the diagnosis/treatment of fibro, rather as individual HCPs or GPs own diagnosis criteria.
I stand to be corrected if anyone know otherwise but i think that is what it is for and after all any more recognition of this condition can only be a good thing.
Hiya,
Yes, I agree, of course more recognition can only be a good thing. I copied the link and put it straight up on FB, too 
Yes, I probably have been "lucky" with my DLA, but I leave little room for misinterpretation or doubt in any applications, and submit photographic evidence, charts of how long and how many steps it takes me to get from bed to bathroom, bathroom to settee, etc, on good and bad days, lots of doctors letters, specialists' letters, drug lists, appointment lists - anything I can think of that supports my "claim" that I'm too ill to work and disabled by said illness (breast cancer, chemo, radiotherapy, fibro, amongst other things).
My last renewal almost bloody killed me - it took me more than 6 months and made me very much more ill. I was briefly on ESA until my lovely man decided he couldn't bear to see me being so stressed and ill from trying to make the powers that be see that I'm a genuine case, and offered to move in and pay all the bills (I am very very very very very very lucky in this respect, I know that!) Both the ESA and the DLA renewal applications ran to over 100 pages of extra information. We quoted lots of their own words from their own documents back to them, things like "She cannot REPEATEDLY, SAFELY, or CONTINUOUSLY perform these actions", which is detailed in their Decision Maker's handbook
I know a lot of applications for whchever benefit get turned down often, and I abhor what this vicious government are doing to the sick and disabled, I truly do. I post about them quite often! I'm no longer on ESA, but it doesn't stop me from being sympathetic to those who are reliant on it and are being chucked onto the Fit For Work list for no other reason than the DM's are under the cosh to meet targets. The whole thing sucks.
With that in mind, I'm now going to expand on the bit of a rant that I seem to have started above - hopefully a constructive one that will help some people with their applications - about applying for DLA/ ESA (I don't mean to hijack your thread, but I think it's relevant to your comment about being lucky):
The only thing that any of us can do to improve our chances until there is better recognition for fibro is to make our applications as water-tight as possible - put pride in your back pocket and SAY if you can't do things, rather than what some people do, which is to play it all down (My Dad, for example, refuses to admit that he cannot get in or out of the bath on his own, or that he needs Mum to help him wash himself, because he's humiliated by that - aren't we all!)
As I've said somewhere else on this forum, I don't think the government give GPs much credence re diagnosis or unfitness to work these days - or else they would/should accept a GP sick note as real evidence of being unfit for work (oops, they aren't called Sick Notes anymore, are they? They are now bizarrely called Fit Notes - saying you're UN fit for work - the govt is beyond a joke) and they wouldn't subject people to the vindictive inaccuracy and merciless cruelty of a target-driven ATOS medical assessment. Because of this, it is IMPERATIVE that you get diagnosed by a rheumatologist, because even the DWP or the govt can't argue with the highest ranking medical job title in the NHS. A follow-up consultant's letter to your GP, listing the diagnosis and treatment plan, adds considerable gravitas to any application. They DO seem to take note of a GP's general opinion of your health and welfare, and my GP and my oncologist and one of my specialists all wrote and said that if I was to be forced to work, it would be extremely dangerous to my health - as indeed it would be (if only non-fibro people could understand how frustrating it is to be NOT able to work! It crucifies me that I can't do the smallest thing without provoking a collapse and a massive flare up that puts me 100% in bed for weeks on end).
Also, there is a list online as to the conditions and medications that a patient is on which says whether it is appropriate or not to invite them in for a medical assessment. If you see anything on that list that applies to you, quote that back to them in your application - nicely - and there's a chance they will not even ask you in for one (morphine is one of them, and I'm on Oramorph). We even said they could come and do a home medical if they wanted to, and pointed out that if I was too ill to be examined, they would have to come back - we wanted them to know we were trying very hard to co-operate under impossible circumstances - which is the truth. This sort of thing, should the app have been unsucessful in terms of putting me in the support group, would have been very dimly viewed by an appeal court, and we all know that there is currently a huge backlog of appeals due to the unfairness of the entity that is ATOS. We also, of course, submitted a letter from my GP saying that I was unfit to attend a medical.
I still think that your GP should be belived if he writes a Fit Note saying you are not going to be fit for work for the forseeable future, and I think it's a gross disrespect of them for the govt to dismiss their opinion in cases like this. You GP ought to know whether you're well or not, and in cases where the GP isn't a good one, or is plain old unpleasant (as some of them can be), then and only then should there be the opportunity for a third party opinion, and it should never be passed by an inexperienced (in your condition) or not properly qualified (many ATOS assessors are physios, which I find find ludicrous) govt appointed official. It should at the very least be by a properly qualified, experienced doctor (or higher) who specialises in your condition. But of course, that would cost too much money, which is what they're trying to save.
I could rant on about the appalling attitude of the government towards us lot, but I'm struggling and need to stop now.
I've put the petition link up as a public one on FB. Maybe other people could do the same.
xXx
Me again -
Went to the WHO website, can only find this:
"Is fibromyalgia included in the International Classification of Diseases?
Fibromyalgia is included in the Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) published by WHO in 1992 as follows:
M79 Other soft tissue disorders, not elsewhere classified
M79.0 Rheumatism, unspecified
Fibromyalgia
Fibrositis"
And this interesting document from them on pain management -
who.int/medicines/areas/qua...
I
It unfortunately is more recent than the ICD entry, which was dated 1992 (remarkabky out of date), being dated as 2008. It says:
"Although fibromyalgia is not separately classified in the WHO data, its prevalence is estimated to be between 3-6% of the world population."
Does not being seperately classified mean there aren't any guidelines? I can't find guidelines for fibro anywhere om the WHO site. I would have thought, given the wording of the petition, that there should be! Does anyone know where to find them?
xXx
Whoa what a reply that was! It took me a couple of attempts to read it..... : - ))
However i must say that i agree with absolutely everything you have said. Although some people are not in the fortunate situation to have an understanding Doctor as i believe their are still quite a few who like Atos HCPs do not fully understand/recognise Fibro : - (( which is a sad state of affairs but like everything else it is the poor/disabled who suffer as a result of this.
Speaking from my own personal experience i have now gone through two assessments with Atos and on the first one i scored 0 points (which is very common) asked for a copy of the report done by Atos and when i received it i actually called them and told them "You have got my report muddled up with someone else" as it was so inaccurate! Grr getting mad....... Thankfully on that occasion a letter from my Gp sorted it.
Second one filled in ESA50 but no face to face assessment scored 0 points again so this time involved local MP and cut a very long story short eventually sorted again and now living in fear of the dreaded brown envelope arriving anytime soon..... : - ((
It is absolutely criminal the way that the sick and disabled are being treated by this Government.
For me as i live in Scotland i will most definitely be voting for Independence in 2014 with the hope that if we gain it we will be looked after better than what the ConDems have been doing, but then again i really can not see how it could be any worse!.
Our struggle continues! and for anyone reading your above post there is some very good advice contained within it, Make sure your forms are filled in with as much information and evidence as possible and if possible backed up by GPs and Specialists letters.
If you "cannot REPEATEDLY, SAFELY, or CONTINUOUSLY perform actions" then state it in your form(that is an excellent piece of advice) as the answer to a lot of the questions you may be able to do what is being asked but not repeatedly, safely or continuously, i think in an acceptable time frame also counts i,e if it were to take you twice as long as someone with no disability could perform it.
And please seek help from someone who has experience in these forms if you are unsure as it could be the difference of getting what you are entitled to without having the added stress if having to appeal.
Whoa thats me done now for the day........... : - )) Heading off to see if can find marbles as have been missing for sometime.... Calling out "here marbles" "here marbles" where are you? lol
Little tune to brighten up our day before i go -
It is rec by the worlds health org and in several rec ref medical materials and very importantly by the courts
Done.......
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