Fibromyalgia Action UK
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Do you know the more blogs i see on here with DLA the more of them are ll refused for one thing and another i myself have just been turned down with the backing of my GP she actually told me to apply for it so i did through DIAL who came to my home and filled in th forms but i know my GP would have written a good letter for me as she knows how i suffer etc but no still turned down then i see blogs of people who seem alot worse off than me being turned down ????????

What do they want i am sure(no offence to those getting it ) you must have to have one foot in the grave lol who decides our fate who actually sits there and reads (if they bother too) through all the claim forms they must get and say yes to her/him or no to her/him ??????

i just hope that one day they are very very very clodse to someone who has got or gets fibro and jus see how they struggle throughand how much their life has changed and how it effects the whole family a husband loses the wife he had the kids llose the mother they had it really does turn your life upside down doesnt it ????

yet still with allthe hassle od daily living with fibro and all its delights and stresses we still have to muddle through we dont nedd to have to keep proving to ll these different depts that we are NOT putting this on it is NOT in our heads and in most cases we are NOT fit to work so please someone in those depts LISTEN LISTEN LISTEN and come and spend a month inour shoes and see the varying degrees of pain/suffering we all go through


love to you all now off for a cuppa ad sit down 4 hours before i get my daughter up for work lol i have done half a days work lol by the time i get her up love diddle xxxx

26 Replies

Hi diddle

I know what you mean. I had my DLA turned down again even with cancer on top of fibro and a few other illnesses and that was the MacMillan adviser that filled it all in for me when she came to my house. At least they are leaving my ESA alone for now as I was kicked off that three times before the latest diagnosis. Trouble is most of my records are still in London even though I've been back nearly 4 years! So I'm just trying to get everything together so that at least after I've had my surgery I can have a better chance.

I hope you have a good day.

Christine xxx


I also have cancer of the cervix and they think its in my Bladder will find out tomorrow if it is Have had two chemo third big one on Friday and to get ten Radiotherapy and five chemo.s along with it I have had two letters telling me they still want more information Now my fibro is getting worse and cant really walk McMillan sent someone in to me filled in forms as well are they waiting to find out if mine is not curable because I will find this out tomorrow This has been going on for 3 months I don't even get ESA I hope you all get it when you appeal my sister had two strokes and when she had them was diagnosed with Fibromyalgia she has a bit of brain damage from the strokes and was turned down she could hardly walk and use her hands But she appealed and won her case and that was because of the doctor he seemed to know a lot about Fibro and I think a lot of these older doctors don't know anything about it and that is what is wrong another sister was diagnosed Wright away with her own doctor when it took me 4 years to be diagnosed so don't give up I will find out tomorrow if whis is in my Bladder and if it is its not curable so I wonder if you ae right one foot in the grave Hope you win your appeal Margaret xx


The very best of luck Margaret that it hasn't spread. It's ridiculous what we are put through on top of being ill. Christine x


My Darlings its not you, it all stems down to the the FACT of IGNORANCE of the people who assesse the application forms ,no understanding of medical cond/Disability/Disablement.

the times i faced the "TRIBUNALS! HAHA the doctor so old asked me what the condition was,then another appeal sitting with a Medical Encyclpodia "sorry for spelling" they forget we are humans within.,if only there was a way of giving them a body swap for a day they would soon change there opinion then !!!!!!!!,

take care xx


It breaks my heart when I read blogs like these. I managed to get HRM and LRC but it was only due to the excellent help I had from my ME self help group. I am now just waiting to hear back from ESA last year I had support group. I am really worried as I am now 60 and don't pick up pension until next May. This worry doesn't help us. I am so sorry, Diddle that you have had such a battle, I might be able to help you as I still have all my notes to help fill out these forms, Aileen xx


I'm the same got an appeal in for ESA can't see me winning even with my GP 2 consultants reports and up 2 now a 10 month wait,I agree let these appeal people live in our bodies for a day or if 1 of their family had fibro wE soon see a change of heart.

Chins up karen xx


Hello all I'm very new to this site and this is my first comment.

I too have been turned down for DLA and I really believe it is because no one knows or understands Fibromyalgia let alone how to spell it.

I am on 16 tablets a day and Morphine when I am really bad and cannot see myself working again for a while.

I get so angry when people like my ex husband gets given every thing first time when all he has is a bad knee. He went to his interview in a wheelchair that he borrowed off a friend who is also in on the scam, he was also working cash in hand jobs but still he gets DLA he now has a brand new car all paid for by the Tax payers.

I have reported him once because he said that our son helps get him in and out of bed which is so untrue, I told them to follow him for a week to see how he referees football matches and works cash in hand but all that happened was he got asked to attend another interview and what did he do.... Went up into the loft to get his crutches that the hospital gave him a few years before down and when our daughter asked what he was doing with them and hope he was not taking them to the interview he said no he was returning them back to the hospital, after the interview he seemed really happy that he had got away with it and when taking our daughter home to me she saw the crutches in the back of the car.

Our daughter is 15 and has decided that she wants nothing to do with her dad till he does the decent thing and give the car back and stop claiming.

That was a year ago and still he is claiming.

I think they have got stricter policies in place now and feel like we need to make a total awareness of Fibromyalgia before people will understand..

Lots of hugs and best wishes to everyone

Foxyshar xxx


Well all I can say it's because of people like yout ex husband, that sick people are being refused DLA, Did they catch him? did they stop it? See, the thing is the newspapers get hold of these and sensationalise them. However the media does not sensationalise how hard for sick people it is to get.


Just like to say that it very hard to get DLA,as they are taking disabled people off some have no legs,or other limbs, but as long as they can write with a pen, or pick up something light, they are fit for work???? that's what is happening around here, I live in in South Wales, I know of a person who has had a stoke, they have taken his car back, and have knocked him off it all, he is now on Job seekers Ha Ha. What do you expect with someone that was born in to wealth been sent to the top education and dose not know anything about the real world, give him £220 to live on, and pay all the bills ect. God I hate them all .


Not sure if you're confusing DLA with ESA. You can get DLA and still be able to work. ESA is the Employment Support Allowance which is the one that has the Work Capability Assessment (WCA) where using the pen and lifting a lightweight box comes into the equation.

It's the WCA where folks are classed as being mobile as long as they can "mobilise" in a wheelchair even if they've never been assessed as needing one! It has been known that if the WCA is at odds ie someone has been assessed as being able to walk further than the distance required for HRM/DLA that they've lost their Motability car - even if there is an ESA appeal in progress.

There have been some people who've had ESA refused/taken away who've been told to go on JSA only to be told by the Job Centre that they're not fit enough to be looking for work try ESA!!!

A certain Millionaire Prime Minister claimed DLA for his disabled son & you never heard the media give him a hard time about it yet when a couple who won the lottery still claimed it was splashed all over the papers - distinct double standards.

The Government have been quite happy to feed the media the misleading statistics (it has been admitted by them that this is in fact the case) and has managed to increase the levels of disability hate crime at the same time.


Hi everyone. Why has no one tried to set up somthing like a check list on here? I've failed twice using benefit for work so have decided never again. There must be a common thing we are all doing wrong or even right. I work in teaching and have realised that my career is hurting me, all the years of hard study at uni and all the debt I came out with, I will still be paying long after I die. Why have we not got a PDF checklist? We have all been through this and why are we not helping one another (sorry for my rant).


I'm not entirely sure if a PDF checklist is the way to go as everyone's case is going to be different. I also firmly believe in "it ain't what you say, it's the way that you say it" sometimes it may just be a case of not giving enough clarification which is especially important if you have a fluctuating condition.

I must admit I'm a strong believer of using Citizen's Advice or a similar organisation whenever possible. If you are in the services or a dependent of someone who is serving or ex-services there are the likes of SSAFA and RBL who can help too.

Anytime either my husband or I have claimed for DLA & he's claimed ESA we've used our local CAB who have been brilliant.

We were both originally turned down for DLA, hubby got his at Tribunal & CAB went with us whilst I got mine on reconsideration originally and then again on renewal where it was increased. You have a higher chance of overturning a decision if you have an organisation like CAB behind you. My husband also had tribunal assistance for his ESA and won - the national average for appeals is 40% (which is what they reckon your chance is without support) but the average for our local CAB is 72%. When he went to his War Pension Tribunal we had help from SSAFA and RBL.

I put this information I found on the UKfibromyalgia Forum for anyone turned down for ESA which hopefully may help.


Hi Lima

I went to teh CAB and they said they no longer have anyone who can help to fill teh DLA and Appeals letters, my local DIAL said the same thing that they have no one as funding has been cut. So in my area of Greater London I am stuck and the more I suffer, the more I feel ill and the mor my disability gets worse there are less people or organisations to help. I do agree though that it all comes down to what you say, but what is it that I/We are saying wrong? That is what I meant that an example of an appeal letter or the way you fill the form in, or the information I/We need to send in, or what I/We have to ask of GP's. I am stuck and on days when I feel like ending it all, I am forced to get up and go to work as I don't qulify foe anything and can't get any benefits.


Is there a support group near you that you could perhaps ask for some assistance?

If you haven't already asked for an appeal and you are within 28 days of your decision, get your form/letter in, or phone ( DLA Helpline is 01253 331044) tell them you want a reconsideration. You also need to ask for a "Statement of Reasons" which will tell you exactly why you were turned down and will give you areas to concentrate on & which may require clarification. The first place I looked on my Decision letter was to see if they'd considered my medical report or even asked for a medical report from my GP - they hadn't!

Follow it up with a the Appeal Form GL24 (they should automatically carry out a reconsideration when you ask for the appeal). You can download the Form GL24 here:

This may also be of assistance:

Disability Living Allowance, A guide to appealing Disability Living Allowance Decisions:

They have other factsheets too:

I also know the Spartacus Forum are trying to create a buddy system for claims

Hope at least some of that helps.


In spite of what the media would have the public think, DLA is becoming harder and harder to get. DLA isn't based on a diagnosis so just because you have a particular illness or disability doesn't automatically mean you will be given it, it's based on what you can or, rather, cannot do for yourself. DLA is classed as an "in work" benefit so even if you are working you should technically still be able to claim it if you need it & there are a lot of people who rely on their DLA HRM to pay for their adapted Motability car that allows them to get to work.

You may even find, as I did, that the Decision Maker never even got a report from your GP and just turned you down anyway. As far as I've been able to find out, the Decision Maker isn't usually someone who's medically qualified - something which I think is ridiculous.

I believe that the DWP are deliberately turning down claims and making people fight every step of the way. A lot of form filling is a pain and causes a lot of stress, I wouldn't be at all surprised if they were trying to wear claimants down into not appealing by making it such a stressful process for them.


I forgot about something that Sheila Gilmore MP who is a member of the Work & Pension Select Committee wrote at the start of the year:

" I am also encountering a fairly high number of people who are being refused DLA at renewal claim time. This of course gives the lie to the Government assertion that people get given the benefit regardless of any change in their situation. But more worrying I wonder if the DWP is under instruction to start ‘tightening up’ already. If more people are taken off benefit in the run up to PIP then the Government may be able to reduce the apparent number of ‘losers’ when the change takes place. If anyone has any experience/examples of this I would be particularly interested in hearing about them."

I'm sure most of us have come to more or less the same conclusion as she has!!!


Hi Lima6MCT,

As per your last para...totally agree. then there are those who are not as "clued up" as others and have no idea what to do, so do nothing. i'm sure there are thousands of people on other sites who are saying the very same as us.

when i appealed my decision after my first medical in June 2010 (won in july 2011) i went to CAB and the lady there said all she did was appeals...just about says it all really!!! she also said as the "system" was so overloaded with chan

ging from Income support to ESA (i think) and they couldn't cope, they were turning everyone down to give them breathing space.....ppfftt well thanks for that one then!!!

just had another "medical" as per previous posts on here, and await the brown envelope of doom and stress.

Thoughts to all and take care

Jan H xxx


Hi all ;)

Yes they asked him in for an interview stopped his money for 1month then he got it all back.

All because he lied to his doctor and then took crutches to the interview.

I also know that you can work with DLA but I think that if you are getting the mobility part then I'm sure you have informed them that you cannot walk very far .. How can he be refereeing football matches, delivering Avon catalogues and working as a full time carpenter with his company ad in the yellow pages.

Him and a lot of others are falsely claiming DLA and laughing all the way to the bank.

Big hugs

Foxyshar x


I totally agree Lima. I am just filling yet another LCW form the second this year. So think that this time I might get another medical, the first was two years ago. But I wont give up or give in. I have had letters from everyone but still dosnt make a difference. I have asked my GP for a detailed letter on how much help I need, day and night. Also about not bein able to walk far before the lead weights and pains pull me down. But been told I will have to pay private for these, pay for consultation and for letter!! How redick is that one GRRRRR :( x


As I found out earlier this year (when we needed a letter from Hubby's GP) if you ask for them yourself then you have to pay but if the likes of CAB or DWP ask your GP for one then you don't.


Hi diddle,

truly know what you are saying, it's very frustrating and distressing and does nothing to help us at all.

I too have seen the comment.s on here about these "medical" and the wretched Atos, really is mind boggling that sooooo many of us are all in the same boat.

I've often thought on sites for other illnesses and disabilities thousand of people must be moaning about the same things as us.

it seems so unfair.

Chin up and fight on, thoughts and take care

Jan H xx


The problem is that the Work Capability Assessment is just that - an assessment of your capability for work. It may be carried out by a "Health Care Professional" (not necessarily a Doctor - they could be a Nurse or Physiotherapist) but the computer that processes the findings of the HCP only works on tick boxes and there is no flexibility in the system that allows for fluctuating conditions or for mental health issues.

The impression I get is that because the Decision Maker isn't required to have any medical training they basically go by what they are told in the report that was spat out by the computer. After seeing my husband's ESA85 report it's pretty obvious that this is the case as there were plenty of easy to find errors that were ignored completely - they

couldn't even get his age correct!


Hi Diddle, it sound's like you have recently been refused, do Appeal against their decision, to give you a glimmer of hope, it is very rare, the 1st application go throu. Sometime's even on the Appeal, does not either. Leave it a short while, then apply for another application, this is how it was for me. It seem's they want to know you really have a problem, if you do then you will carry on until you do. I do know how you feel, I did have a Lady Dr I think from Atos, who did a home visit. Unfortunately it is a long process, and soooooooooo draining. Do let us know how you get on, and we will support you. Take it a step at a time, and almost be prepared to do it again. Take care xx Jane


im new to all this ..i have got fibro and going to the tribunal next wedesday for the DLA but i do get cross when someone is healthy and the fibro suffered like us get nothing !!


I to was turned down but tried again this time i put all my worse days down i did not put anything about good days as they are few and far between i aslo got a solicitor to help me they are some who are trained in just this sort of thing and we WON i now get DLA Living and mobility. if you go to C.A.B they will tell you if there is a solicitor in your area that can help and no it did not cost me i got legal aid. I had a freind who also was turned down and she went on the internet and a disablity group helped her to win so dont give up just keep on fieghting like you do with this illness


Hi, I'm in exactly the same situation as you. I feel like they actually want me to die now with lack of money. I too got someone professional to help me with the form - and it's as if they never read it. I put down I had panic attacks and they said I didn't. This is one example. I am totally alone and get nothing. I went to welfare rights and was asked to not take it personally, but I've convinced that even if you are one foot in the grave, I still wouldn't get it. I have recently been to a neurosurgeon and he wants to operate on disc bulges on my neck, where a trapped nerve is. I've had a failed operation on my arm for nerve pain, on top of the rest. Even though they know I'm going on an operating theatre, they still give me nothing. I didn't get up till 6pm cos I don't sleep and miss days, alone and it's hell. I can't have a proper relationship with anyone cos they don't understand - because I look OK. I'm just getting more depressed however, just try to think nice thoughts and keep doing this but I think about DLA and how I'm supposed to manage. You can't speak to them. It's a 'wall' or a 'system' and it's so 'killing' and energy taking to fight - till you have nothing to fight left with. And they want everyone to give up. At least you have a daughter. She's human. I know what you feel like. I lost my son through this. Ax


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