Shocked by DWP document on Fibro - Fibromyalgia Acti...

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Shocked by DWP document on Fibro

Kirby profile image
43 Replies

I am a member of Benefits&Work and was looking for up-to-date ESA manuals to download as I got the preliminary letter from the DWP today :-(

I downloaded the Fibromyalgia.doc on their site and I have heard how the DWP 'perceive' fibromyalgia and while some of the stuff was OK, I was beyond shocked to find a sub-heading marked 'Malingering' and of course all the stuff about the biopsychosocial model which has been used in the US to deny disabled people their health insurance payouts. No wonder people with fibromyalgia get a raw deal.

I have mental health issues (eg anxiety, social and agoraphobia etc) as well as fibro but so many of the symptoms of fibro are mental AS WELL as physical eg fatigue and cognitive skills just as many mental health problems are physical AS WELL eg IBS, breathing, palpitations etc. Using new ESA criteria on fibromyalgia, if you state that it is 'mental' they have got you in a bind by saying 'see, it's all in their heads' whereas if you say it is physical a lot of the descriptors won't apply so you're in a no-win situation more than ever before.

I am incensed that there's a paragraph on malingering. Do they say that about all conditions or are people with fibromyalgia especially singled out to deny us our entitlements?

I tried to upload the document but can't. Sorry folks!

Take care

Kirby

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Kirby
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43 Replies
bbstport profile image
bbstport

can our admin or anyone else download this to the site please

Lima6MCT profile image
Lima6MCT

There use to be a handbook listing various illnesses/disabilities but HCPs are now supposed to use the NHS UK site. I can't find the exact date this came into force but I'm sure that it's only been in the last couple of months or so:

dwp.gov.uk/publications/spe...

nhs.uk/Conditions/Fibromyal...

Hello there Kirby, are you able to provide the DWP link and I will see what I can do. I can't seem to find anything myself at the moment. Having a foggy evening, so please bear with me. It happens to us all. xxx

Kirby profile image
Kirby in reply to

Hi Libs

Foggy too myself. I downloaded it from Benefits&Work site so don't have a link. It's on my desktop. Maybe I could PM it to you?

xxx

in reply toKirby

Yes please Kirby, that would be a great help and then I will look into it for you my dear xxxx

Kirby profile image
Kirby in reply to

Hi Libs

Am unable to send it in a PM either because couldn't a place for attachments.

But on the front page of the doc it says:

Continuing Medical Education Programme

Fibromyalgia - Guidelines for the Disability Analyst

MED/S2/CMEP~0035

Module: 14

As I say, I downloaded it from benefits&work while searching through their manuals!

xx

donna67 profile image
donna67

Isn't there anyway admin could do a pertiton to parliment as that's what happened before for them to recognise fibromyalgia to be a serious and painful condition as I sign that and got a letter saying in may (foggy of yr) they did recognise this as a serious condition surely there's enough of us to sign and our family and friends its just coming up with what sort of pertiton as I'm so not good at words ect what do you all think?

Lima6MCT profile image
Lima6MCT in reply todonna67

The Government do actually say they recognise FM as an illness/disability but I think the problem is that there will always be those who carry out the assessments who are of the "it's all in the mind" persuasion. I'm sure I have seen an article about this online - I shall look for it and post the details.

Tupney profile image
Tupney

this is what i was truing to say in my last blog post. we are being parked and refered to as ltb,s. for those who never saw the panarama program on disability and benefits. this means lying theiving bastards. this is how those of us with mental health conditiond are being defined.

shields profile image
shields

benefitsandwork.co.uk/ this site has been a great help

in reply toshields

This is the site Kirby is talking about Shields at the top of this thread in her initial post. :)

timj53 profile image
timj53

it's all in your head is a comment I have had from some "friends" and relatives over the last 10 years!!!

Kasha profile image
Kasha in reply totimj53

THis comment makes me so ANGRY! If it was all in our head would we really "choose" to put ourselves through this living hell....would I really allow my mind to stop me going around wedding fayres with my only daughter for her forthcoming wedding...I could go on and on with the list of things I want to do that Fybro doesnt allow...unfortunately my own GP is one of these that thinks it doesnt exist, I fight a losing battle with her constantly even though my consultant has written to her :-( its complete ignorance.

AliatFusion profile image
AliatFusion

I would really like more info on this, I have to go to a tribunal hearing to claim ESA.

in reply toAliatFusion

AliatFusion, if you email us on info@fibroaction.org we can send you the Benefits and Work info sheets for free. These info sheets contain lots of useful info on ESA and DLA regarding completing forms, assessments and appeals.

I hope you find them helpful.

Best wishes and hugs, xx

Libs

molly44 profile image
molly44 in reply to

Hi LibertyZ

I have failed my Atos medical the dreaded zero points! I have Fibro, M.E., prolapsed discs and nodal osteoarthritis. I have 1 week left to appeal. Am now panicking as CAB sent list of descriptors and said I should appeal stating how I fit any of the descriptors, but I don't know where to start. Damn you 'brain fog'!! Do any of these info sheets help with appeals and descriptors?? I would really appreciate any help and thank you in advance if you are able to help!

kind regards

molly44

can you also send me them too please as i am in the same boat as allafusion awaiting tribunal

sylviajones profile image
sylviajones

i have to another medical .i was given esa last year,but i was phoned this week to tell me i was going to have have another medical,as the esa last only 12 months. and was going to be put on a work proggramme. i told her i have not had my medical yet and she said thats alright i will be put on a works proggramme. and i will do courses. i told her i have fibro,incontinance and arthritis , she said dss does not reconnise fibre..well maybe she is right because my partner is always saying to me i should get a job but he justs sits on his back side. i get so frustated sometimes and i think it life worth living any more

Angeldancea812 profile image
Angeldancea812 in reply tosylviajones

That's exactly my problem. My ex telling me to get a job when he doesn't work and often says he feels fit enough to do something. We are exactly the same age and it makes me so angry knowing that he thinks I am having a laugh when I say I can't reach up high or touch the ground. In fact when we go shopping he helps me as he knows I can't do it otherwise.

hugosmum70 profile image
hugosmum70

she has no right to make that conclusion nor is it her decision to put you on work related ESA that sounds like its a foregone conclusion before you have your medical. i would phone dss/dwp and ask them if this is right and why can they do this if you havent yet had a medical.see your doc too if hes supportive. DIAL can help you. was given the number for them but cant find it just now.

Saskia profile image
Saskia in reply tohugosmum70

Hi,

What does DIAL stand for? I haven't heard of this. It is all so very confusing isn't it and all the uncertainty makes us more anxious, which also exacerbates our physical symptoms.

Have a good afternoon, hugosmum,

Love and hugs Saskia XX

donna67 profile image
donna67

When I was first told by the specialist at the hospital I had this alot of people said it was all in my head and this used ot make me mad as hell as worked for social services and loved my job used to go dancing drinking horse riding and loved walking though nature or places like that now I'd be lucky if can get round the local shop and back without being in pain and that's not in my head I miss not being how I used to be and often cry because I miss my job my life but then we have to adapt I really don't think there enough out there for people to understand how much pain we all do suffer on bad days though ...even cancer n ms have adverts fibro hugs x

Angeldancea812 profile image
Angeldancea812 in reply todonna67

Quite agree. I used to sell Avon door to door and go to my local church. Once upon a time, before fibro, it took 5 minutes to get to church. I can barely walk that far now.

Shortnsweet54 profile image
Shortnsweet54

Think this contradicts what they say...................................................

Posted by LindseyMid FIBROACTION 21 Jun 201236 commentsReport

The Department of Work and Pensions (DWP) has restated that they recognise Fibro as a potentially significantly disabling condition. This isn't the first time they have officially stated this, but up-to-date reiterations of this can't hurt when people with Fibro are still being led to believe that Fibro "doesn't count" when considering eligibility for benefits.

David Morris MP (Morecambe and Lunesdale, Conservative) asked the question:

"To ask the Secretary of State for Work and Pensions whether he has considered recognising fibromyalgia in the benefits system."

Maria Miller MP (Parliamentary Under Secretary of State (Disabled People), Work and Pensions; Basingstoke, Conservative) responded on 18 June with:

"The Department recognises fibromyalgia as a potentially significantly disabling condition.

Where a clinical diagnosis of fibromyalgia has been made, full account will be taken of its disabling effects in determining eligibility for benefits."

theyworkforyou.com/wran...

For further information on benefits, Work Capability Assessments, DLA Medicals and more, see:

fibroaction.org/Pages/B...

Lima6MCT profile image
Lima6MCT in reply toShortnsweet54

Just tried the links you gave but they're both coming up with error messages.

Kirby profile image
Kirby

Hi all

Sorry for not getting back but needed to start filling in my form (well a dummy) before it actually comes. I've decided to do a little each day.

I have to say the whole document was written in 2001 so it may be out of date. It's not so much what's said but the fact they assume that people are faking it and the fact that there's a paragraph there at all with that title. I'm not surprised because the whole thing that triggered this 'new approach' which began under New Labour was these big health insurers (UNUM and Profs Aylward et al) who have been in the business of influencing the policy on welfare order to further their ends - shrinking the Welfare State and have people rely on private health insurance (and the people in the States who were denied pay outs were typically fibro and ME patients). Aylward and his chronies even ran workshops on 'malingering' so it's a core concept in their approach.

Anyway, here is the 'malingering paragraph':

"9.6.1 Malingering

Although apparent inconsistencies between the clinical findings and the claimed degree of disability are an intrinsic feature of these disorders, we must be alert for any areas where such inconsistencies are so unusual or conflicting as to suggest that the claimant is making an intentional attempt to simulate disability in the pursuit of gain. The use of “malingering” and other pejorative terms should be avoided but it is possible to describe outstanding contradictions in a way that is fair, overt and yet non-judgemental."

So... they know it's perjorative but can insinuate it in their reports. I was only chatting to someone on FB the other day (it may have been for DLA and she had hypermobility) but the report actually said she was making the whole thing up!! So there is a culture of this among Atos coming straight down from the DWP.

Boromoor profile image
Boromoor in reply toKirby

Thank you for that, as I said in an earlier post, I can drive a car and put on a coat without groaning in agony, which is apparently "inconsistent" with the examination, so I'm obviously a malingerer. Thing is, after reading the report carefully, including the headings the DWP print on each page, I'm of the opinion that the decision is made before we even get the appointment. At the top of page 16 is printed:

“Evidence to support the opinion that the person does not meet any of the descriptors for limited capability for work related activity”

Followed by sub-headings down the page:

1. Terminally Ill

2. Chemotherapy/Radiotherapy

3. Pregnancy Risk

4. Substantial Mental or Physical Risks.

That's asking for positive proof of a negative, harder to find than positive proof that our illness and disability is genuine; it a bit like asking for proof that aliens DON'T exist?

Also, I wonder if anyone at the DWP actually bother to read the other 23 pages of the report?

Kirby profile image
Kirby in reply toBoromoor

Hi Boromoor

A friend of mine who knows a lot about welfare rights and has supported several people at tribunals etc said they didn't bother to read the forms as they have so many to go through.

It is just a convoluted Kafkaesque system to deter people from getting their entitlements and strip them of their benefits. It's absurd of them to think that there won't be inconsistencies because if you have a fluctuating condition of course your answers will vary. They're not supposed to take a snapshot. Again, it wouldn't surprise me if they're suspicious if you're too consistent. They would say your memory is fine rather than foggy and that you can organize yourself! You can't win with these creeps.

jayjayboy profile image
jayjayboy

My sister sees an adviser at the jobcentre at the moment, and she was worried that she will be sent for a medical, her advisor looked up the computer and told her she was due to go for her medical in June this year, BUT that she will be sent an ESA form out to complete, and not to worry if she doesnt get the form BEFORE she gets the medical as this sometimes happens. SO if they have the date of her medical BEFORE she even had the form posted out to complete. What does that mean. They obviously had no intention even looking at the deatils on her form,as they already have the date for her medical on the computer.She does have fibro ,but this is not why she is filling in the ESA form she is claiming due to depression and anxiety etc.

velvetv profile image
velvetv

fibroaction.org/documents/b...

I think this might be the link to the above mentioned document

Kirby profile image
Kirby in reply tovelvetv

That's it, Velvetv! Thanks. Mine was in a slightly different format but otherwise the wording is the same.

Cheers

K

shelley347 profile image
shelley347

I would be very grateful for the info sheets for filling in DLA forms, can you send me some please. Also can you get ESA for more than 12 months, I was told you can't - but reading this I am wondering?? Thanks for any help or answers, Shelley

Kirby profile image
Kirby in reply toshelley347

Hi Shelley

If you send a message to Liberty (admin) she'll be able to send you the DLA manual. :-)

If you're on contributions ESA (or Incapacity Benefit) you can get ESA for more than 12 months if you you get put into the Support Group OR if you don't have a partner then you would be able to apply for Income-based ESA when your contribution one runs out.

Cheers

K x

shelley347 profile image
shelley347

Thanks Kirby, that is very helpful x

Kirby profile image
Kirby in reply toshelley347

You're welcome x

cmdrpolly profile image
cmdrpolly

I am so sorry to hear / see all these posts as well as the pain/exhaustion/insomnia / IBS you have the added anxiety of going through all this rubbish - hands up all those who would swop fibro for a good steady job with lots of pay.

when I was working people would walk along side me and joke about my fibro walk - you know the soft shoe shuffle with pauses to allow the legs to start functioning again - would love to work again - would be over the moon

take care all and best wishes for your assessments

Sammicat15 profile image
Sammicat15

hi all. have just tapped into this after several days of being fog-bound and bouncing off walls at times with dizziness! when I went to see my appointed officer at the Job Centre before Xmas, after being put in the WRAG, she told me that I wouldnt be assessed again for 2 years. her computer told her that. ironic given that I'll now have to come off ESA because my partner has just moved in with me and I will no longer be eligible for any money!

As for the "malingering" comments, why are we not surprised? You can see it in folks' faces any time the subject of FM comes up. If only we could project our pain onto those skeptics, eh?

Btw, am thinking of having a badge made up to wear which says "I'm not lazy - am just in energy-saving mode"!!

Kirby profile image
Kirby in reply toSammicat15

Lol - good idea for a badge! x

Sammicat15 profile image
Sammicat15

I meant to swap 2 of those paragraphs around as it all came out wrong lol - oh well, never mind...

Yvonne64 profile image
Yvonne64

I can see that those of us on benefit are going yo have fun filling the form in and then managing to get any benefit at all. I think its totally unfair on any of us having to reclaim cause of the government changing the system.

Lets hope enough of us appeals if they don't pass the assessment, then maybe things can be changed. Maybe it wii be easier for those of us who have more than one issuse

Kirby profile image
Kirby in reply toYvonne64

I sent mine off in March, Yvonne. I have anxiety and agoraphobia that predate my diagnosis of fibro (I shouldn't say, luckily but knowing how they treat fibro I feel I have to rely on them taking my other conditions more seriously). It's so wrong. They are also changing the rules sometime this year but before you can appeal you will have to go through a mandatory reconsideration by the DWP first and the terrible thing about that is, it's not time-limited. So they could sit on it for ages. I just hope if I need to appeal it will before this nasty piece of legislation comes into force. x

pondminstrel profile image
pondminstrel

message me and I give you a link to the man who saved me!! lol and im not kidding lol x

Kirby profile image
Kirby in reply topondminstrel

Thanks Ponminstrel. I got in the Support Group later in April :-) x

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