disability shake-up: I am constantly... - Fibromyalgia Acti...

Fibromyalgia Action UK

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disability shake-up

snowbell profile image
24 Replies

I am constantly worrying at the mo about what will happen when the incapacity benefit is changed over, or reassessed, or whatever they finally decide to do. Last I heard there was talk of compulsory visual assessments. But what about people like us with fm, or one of the other fatigue-linked illnesses? On current and past assessments that would mean I was eligible for work! I can't imagine many employers letting you have a nap or not come into work because you just don't feel like it today. If even that amount of work was poss! I haven't wore for over 6yrs now and neverwill be able to. Do they ralise how much upset and stress these benfits cause? Sometimes getting a benefit can simply depend on who happens to be looking at your form that day. I have in past had that happen to me. Arrggghhh! Why can't they just leave us to concentrate on getting through the day rather than if we're eligible for benefits or not- they will never catch the true fraudsters (they are too clever and not as honest as true sufferers). Anyway rant over. sorry so long don't talk to people much xx

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snowbell profile image
snowbell
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24 Replies

I absolutely agree with what you've said...... I'm still working and I finish for the weekend tonight and I am sooo tired and ache so much but look extremely healthy. I'm hobbling now but don't need walking sticks or crutches but do 10 hours a day in childcare. I really don't think I can carry on till I'm 'pension age' at 63. I'd like to rest for the weekend now but I have lots of paperwork to do.

A friend who fills in forms for people hoping to receive benefits said exactly the same as you, sometimes she thinks it depends on who looks at the form that day. x

Ebony profile image
Ebony

Hi Snowbell, I understand all the changes being proposed are very stressful, if you are on Incapacity benefit you will be moved onto ESA for which you do have to have a face to face interview. I am on ESA and have never been on incapacity but I struggled to get my ESA, last time it was reviewed i was told I was fit for work but appealed and won it on appeal.

Plenty of info on ESA and claiming and appeals on benefitsandwork.co.uk,

Fribro action are member of this site and it is very helpful

Kirby profile image
Kirby in reply to Ebony

Yes benefitsandwork a great site, Snowbell. Not everyone has a face-to-face interview. I and another member of my family have agoraphobia and panic attacks and you can get your doctor to support your need for a home visit. My sister didn't get one, because they are so snowed under at the moment and they put her in the WRAG.

The real fraudsters = the government, the bankers, the chief executives. 0.5% fraud is as low it gets so I spend energy on the real reason for the cuts, not a miniscule amount on benefit fraud.

Kirby profile image
Kirby in reply to Kirby

PS - I am still on IB and dread being transferred but preparing myself and joining campaigning groups, mainly on FB has really helped

VonnyM profile image
VonnyM

Hey Snowbell. I agree with you and so do 99.9% of those who are on benefits, I have been changed to ESA BUT- I have been put in the Work Related Activity Group (WRAG) without anyone assessing me. DWP are not only mind readers, but miracle workers too! AND they can see me without my being aware, are they omnipresent!

I have had to go to appeal on the advice of the Disability Advisor at the JobCentre. I appealed way back in November - I still havent heard whether or not I have got the Benefit rise that ESA claimants got, and I still havent heard about the appeal... I would say though, that if you have anything to do with DWP or ATOS do not tackle them on your own, get a disability advocate.

Kirby profile image
Kirby in reply to VonnyM

And they're trying to make it more difficult for us to appeal. There is a consultation taking place at the moment

Kirby profile image
Kirby in reply to VonnyM

Exactly what happened with my sister, MillyPeede. She is also appealing against being put in the WRAG. She's had a couple of interviews over the phone and now they're leaving her alone, but this government want to force disabled people in the WRAG onto the Work programme. My sister had a reconsideration before appealing and that took ages

i had the limited capacity for work questionaire to fill in. i went to our local disability forum where they filled it in for me, asking me questions etc and observing how i was. i also attached 3 letters from various consultants and a support letter from my endrocrinologist. finally i wrote a lost of all the health problems i have, including the menopause as this affects me badly at times, the list ended up with 20 problems.. i, amazingly, passed and am now on the work group of ESA.

fill it in as if it is your worst day and be honest.i get the fibromyalgia magazine and it has useful tips in .

sunshinerose71 profile image
sunshinerose71 in reply to

Just wondering where you get the Fibromyalgia from Please? Sounds like it will be helpful

nadine1974 profile image
nadine1974

i filled the form in as i was on incapacity benefit, i was then phoned to arrange a face to face interview. the lady came to me as (would u beleive this) our local centre where the dwp are based does NOT have disabled access!!!!!!

she was lovely and patient and put me at ease. few weeks later i recieved the results stating i had been put in the top support cateogory and wouldnt be hassled to go back to work. i have fm, bulging disc and degenerative spine, depression, ibs and overactive bladder. hope this helps xx

diane63 profile image
diane63

i am also very scared about this change.... i had to fight to get my benefits going through lots of appeals... i dont have a life,,, i am morphine patches and oral morphiine.. i have sleep apnoa and many other related illnesses.. i had to get a dwp doctor who came out to asses me and to be honest he was excellent and because of his i recieved my benefit.. but scared now.. cause as u know.. people look at u and think u look ok.. but inside i feel so bad..every day every night... i know i dont look ok to what i usually look like.. but know one gets this.. hope ur all lucky with ur benefits xxx

fibrobilly profile image
fibrobilly

HI

Is there an upper age limit regarding esa, as I am 64 this year, does anyone think I would taken off inacapacity benefit.

thanks.

Kirby profile image
Kirby in reply to fibrobilly

I believe that people who are three years off from pension will be left alone, but best to check.

xx

Sue15197 profile image
Sue15197

I am on DLA, high & medium, on Twitter there are many people discussing DLA and the Benefit cuts that are expected. IF I can find the link, I will post it, but it says that DLA is expected to drop by 20%.

We ALL have to be re-assessed, 45% of claimants are being refused, BUT, 75% of these are appealing and getting it back.

I too am worried about losing it, I am allergic to things and am diabetic, so I need a certain diet, which costs. People are ill with worry. It is disgraceful.

Kirby profile image
Kirby in reply to Sue15197

Hi Sue

Find the link to the Spartacus Report on Twitter if you can. There is to be a further consultation on PIP so need as many people to respond. They are trying to cut DLA by 20% but the figures are dubious and that's what the Spartacus Report is all about. They did a Freedom Of Information request and showed that a lot of the responses of the first consultation were buried.

I think benefits&work also have a link to the draft descriptors

hevs profile image
hevs

I am on ESA...Have applied for disability and was turned down flat...I did a written appeal and was turned down again...so i asked for an oral appeal...I waited 16months for my tribunal date...at the tribunal I was spoken down to and made to feel very uncomfortable...and despite the judge saying to me "I can see just by looking at you that you are quite severly disabled, but we are not here to see how you are today we are here to assess how you were 16months ago!!) consequently I was turned down again!!....the whole system stinks...and as has been said before the cheats and fraudsters get it while genuine people suffer...

Kirby profile image
Kirby in reply to hevs

Cheats and fraudsters = this government and the bankers, hevs. I know you're angry but this is how the government have got away with it by wildly exaggerating claims about benefit fraud and divide and rule tactics. Who are these benefit fraudsters they keep talking about? The Daily Hate Mail readers could think it is you or I because we 'don't look ill' but nobody knows another's personal circumstances and it's not anyone else's business either, my personal and intimate health details. Many have invisible and fluctuating conditions, fibromyalgia, plus mental health problems and many more. The fact is benefit is extremely low and millions of benefits go unclaimed each year. The government, helped on by the Daily Hate Mail are feeding people's heads with rubbish and propaganda about benefit fraud so they have the public on their side to deliver the cuts. What is happening now is akin to what was happening in Nazi germany. That began with the disabled and was in a climate of propaganda and economic crisis

gypsycrafter profile image
gypsycrafter

I am also worried about the benefits changes . I was on incapacity benefit until I reached 60 years one month and 6 days old, just under two years ago and received state pension. On the gov website, it says anyone under 65 will be reassessed. I have no idea if this applies to me or not. I am suffering from osteo arthritis in both hips and knees, spondilosis in c4/5 and lumbar spine, underactive thyroid, overactive bladder, atrial fibrillation and fibro. the next step is to be taken to the vet for a final injection. lol. I have been through appeal and know what you are all going through. They obviously like to make us suffer! you can win!!

barnsleysar profile image
barnsleysar

i had my atos medical in november, the guy doing the assessment was a community nurse not a dr. he left the fibro, carpal tunnel and as off my form and just put i was on benefits because i suffer with anaphylaxis. what a joke, have now appealed and am awaiting the outcome. the people at atos get bonuses for every person they say is fit to work and the lady who rang to say i'd failed my medical said that everyone is being denied esa and then waiting to see who is genuine by appealing it!!!! makes me sick with worry, i mean who is going to offer me a job on an as and when i can function basis.

in reply to barnsleysar

Hi I have fibro, but my son has severe mental health problems. It was a community nurse that did his assessment, we demanded a copy of the assessment, so you can imagine the ruffling of feathers! anyway we got the copy and everything this health care, nurse, professional was told in the interview was totally turned around. We have heard through the gravevine that someone in ATOS had been severly repremanded. We have so much proof of the lies and things twisted around its unbelievable. His appeal is in March so fingers crossed.

barnsleysar profile image
barnsleysar

ps forgot to add the nurse told me my tiredness was due to having a 2 yr old child, sleepless nights and whatnot he didnt have a clue!

VonnyM profile image
VonnyM

I am very concerned that I may lose my DLA high mobility and mid rate care. If that goes I will be housebound. There are not enough buses running where I live and its very expensive to use public transport. I am being made ill through worry. I am also worried about the appeal for my ESA and being put in the WRAG. If I still havent heard I wonder whether I should phone the Jobcentre or the DWP.

fairycazzie profile image
fairycazzie

At end of day i think if you have the medical history backed up and proof in black and white! (like i have with MRI's and journeys back and forth to hospital and how on earth can i make up all the stuff i have..I never even heard of any of it prior a very happy go lucky energetic thing! I am Self-employed and absolutely love my work!! unfortunately on the physical side i have had to give up as i have really struggled and get frustrated so bad and mad. I have had to employ ppl to continue it in the the hope it will go away, but some how am no longer confident as flare ups and disabling to say the least. The less i do the better, so even though i not physically doing the work, i am running it . I wish there was benefits for me as i am having to take such a drop in my earnings :-( xx I wish you all luck and hope that things do not get any worse and that the benefits do not end up putting more strain on sufferes and stress and depression (all because there are fraudsters out there!!!!)

shellby66 profile image
shellby66

i just cant see out this new assessment can work most people whom are genuine ill find it really difficult and are very embarrased and ashamed at the amount of help they need but those who are fraudsters can reel off the help they are supose to need because its all lies so it doesnt hurt them or embarass them. when i have to tell anyone the amount of help i need it hurts me so much i get so upset knowing im in my fortys and need so much help im ashamed of needing help with personal care so im probably very economic with what i tell anyone, i really worry if i lost my benefits i would be at home 24/7 i rely on my wheelchair accessible vehicle cannot get on a bus or in any other vehicle so would never get out life probably wouldnt be worth living it just worries me so much and we all no stress make fibro worse

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