Not sure if I am in the right place here.

I have CFS/M.E and applied for DLA and was refused, everything I put down on my form they basically ignored, for example, I said that I cannot prepare or cook a main meal, and they say I can....I don't understand, when no-one has even had me in for a medical or anything. They have virtually made out that I am lying, cos all the stuff I said afects me, they say don't.

I am sorry if this isn't the sort of advice offered here, but I am at a loss as to what I am supposed to do

I also have a lot of other symptoms such as anxiety and depression, but again they seem to have dismissed these

Any help would be greatly appreciated - oh and I appealed but the refused me again so I have asked for a statement of their reasons.

Did you fill it in with as much information as possible? Stating why you need the help, what happens if you don't get the help, what happens if you try the activity yourself, etc.

Do you have any medical evidence? It's the help that's relevant; not the diagnosis.

I did fill it in with as much as possible. Stated that I could not use pans, utensil and such like because of the pains in my wrists/arms etc.

As for medical evidence, what like? My doctor is very aware of what I am like, and he backed me up, but when they sought advice from one of the "specialists" they said that I was merely on "standard" medication...and that I didn'tseem to be taking anything for the pain, which they never asked me about, the reason I wasnt at the time is that doc thought it would make my fatigue worse! I am now on some medication, and yes it is making me more tired, which in turn is making me more depressed.

I feel like I am in a vicious circle!

Sorry I meant to thank you for your reply too

you could always appeal x

delik did appeal and failed, and can only appeal to the upper tier if the statement of reasons reveals that the law was applied incorrectly.

If your circumstances have changed since you first applied you can reapply though delik. I do agree though that they do not accept your word at face value, who does your meal prep for you? Did they testify what they do daily? I guess anyone can say they can't do meal prep due to pain because they want DLA, you need evidence and that is often hard to find.

Evidence is things like a care plan from Social Services.

Unfortunately the DWP don't really recognise CFS as a chronic condition (this was told to my mum at her tribunal)! as stated in the DWP Decision makers handbook A to Z of medical conditions 'Claimants should have severe levels of functional restriction and spend most of the day in bed and be immobile, They should also have clinically evident muscle wastage to be eligible'

Hi all.

Just wondered if anyone could help.

i have suffered (for approx 9 years now) with CFS/ME. This was only diagnosed in October last year though after years of suffering after being told by a "specialist" that I was just more tired than normal people!

Anyway, I was advised to claim for DLA, because not only do I have CFS and fibromyalgia, I also suffer with severe anxiety, severe depression, IBS as well as many other things.

Of course I applied and was rejected, I appealed and again this was rejected.

It appears that no matter what I have to say, they dismiss it and basically say I am ok.

Can anyone help at all?

I think I am hanging on to my job by a thread as I have had so much time off ad even occ health said that they expect me to have more time off in future, and I believe this too because as of yet the doctor and I have not found the right medication to help me. It is ongoing,

I did claim again back in Feb and am awaiting Tribunal now, which I am told may not be until October, I am going to attend this time so that i can try and explain things clearer. Any pointers? I am not looking to cheat them into paying me if I am not entitled though.

Thanks in advance.

How do those disabilities (the name doesn't matter) mean you have care and /or mobility needs? That is DLA is about - having a disability which means you have care and /or mobility needs.

Hi, thank you for your reply.

Sorry, I meant to say that I did explain to them how these affect me, as I am aware that what is wrong with you is irrelevant as much as how it affects you.

I won't go into too much graphic detail, but mainly I need help with getting about basically, this is due to the severe pain i suffer in my joints, this also restricts me from cooking and preparing a meal, last time I did this on my own I burned myself quite badly, I have severe pain in my wrists and fingers and shoulders, basically all my joints

I have help getting in and out of bed. I don't go out of the house on my own, my anxiety is horrendous.

I am often house bound, don't go anywhere as I have nobody to take me. I can drive but even that is proving more difficult, and am looking for an automatic car now,,,

the list goes on. and on.

Do you have any evidence to back up what you wrote on the form?

How do I back it up?

I have told only the truth

The only thing they have I supposed is my doctors say so.

That and the medication I take to try and combat some of my pain/depression/anxiety

I don't know anything about DLA appeals but, presuming they're not much different to Employment and Support Allowance ones, then you are always better off attending if you are able to. Also try and get someone like CAB or a Welfare Rights person to help you complete the form. You say your Doctor is supportive? You could ask him/her to write a report regarding your illness. You may have to pay for this but it might well be worth it...

EDIT: Supporting evidence can also include your most recent prescription as this proves what medication you need.

as RaeUK says it is the quality of the supporting evidence that helps your claim. When you initially filled out the application did you answer the questions in great detail?

i hope you don.t mind me asking,do you have joint hypermobility syndrome

delik, who helps you with your personal care and mobility? What do they do for you? Can they provide evidence of what they do and did they go to the appeal to evidence this? You are working, how do you get there and how to you manage your personal needs and mobility that the job entails? Who helps? These are the things that will be looked at.

Hi thanks all,

I can get a prescription list no problem, my doctor would be more than willing to write me a letter of support too.

I drive to my job as I have no other choice, atm this is quite hard due to the fact I drive a manual car, but I am looking for an automatic atm, stoney I don;t have joint hypermobility syndrome - apparently it is fibromyalgia I have but I am back to the docs on Friday as I need to speak with him, it's just too intense the pain now and getting worse so I am not sure what it is.

I think this is a long road I am going down to even get close to getting the right medication etc.

I did fill in the form thoroughly but seriously they seem to just ignore what I say and make their own assumptions.

I have help from whoever I can, if noone is around I simply have to try and cope on my own, therefore I don't go out and I don't eat basically.

I don't know anything about DLA appeals but, presuming they're not much different to Employment and Support Allowance ones, then you are always better off attending if you are able to. Also try and get someone like CAB or a Welfare Rights person to help you complete the form. You say your Doctor is supportive? You could ask him/her to write a report regarding your illness. You may have to pay for this but it might well be worth it...

 

EDIT: Supporting evidence can also include your most recent prescription as this proves what medication you need.

I would be bit wary.

When I attended my last (one and only) DLA appeal, the judge stated the reason I was denied is the fact I had made it to the appeal room, based on that I couldnt have been "practically unable to walk".

In my case I had no representation and the appeal centre was in a pedestranised area with the room been at the back of a long corridor on the 4th floor, also wasnt allowed to use the lift.

My advice would be if attending make sure someone goes with you, someone turning up on their OWN for a DLA appeal doesnt make a good impression. I think if cant get representation or someone to go with you a written appeal is probably better.

DLA seems to be a benefit rewarded alot based on face value, if someone has a lot of mobility mods to their home, has a wheelchair, scooter etc. and especially has someone caring for them as well as a cooperative doctor I would expect them to not have much trouble getting the benefit.

But if someone lacks a diganosis or has a uncooperative doctor, has no wheelchair, has had no mods done to their home, has no carer and especially if they live on their own the impression given is they cant be that serious need of help.

On my DLA medical I was asked a lot about aids or help I get, it seems no account is taken into if someone is unable to get help or aids due to having a poor GP and unsympathetic family. eg. I cant mod my home as its rented and I have no money to do so, I live on my own because my family dont want to take me in, and I had a lack of supporting GP evidence because when I claimed and they tried to contact my GP I was seeing locums and the surgery simply didnt respond to the DWP.

The technical details of DLA high rate mobility is how far you can walk, thats it, needs arent mentioned. So with the DWP basing rewards based on help people get, then they deviating from the law. Thats my view.

In my case I had no representation and the appeal centre was in a pedestranised area with the room been at the back of a long corridor on the 4th floor, also wasnt allowed to use the lift.

So, you were damned if you turned up and damned if you didn't.

So with the DWP basing rewards based on help people get,

I was once asked if I get help. I said no. I was then told I clearly don't need it then. I can't get the help because I don't have sufficient DLA to pay for my care needs. A retired WRA pointed out that a) the form states what help you need and b) if that logic was followed, someone living alone won't get DLA. Yet, they still have needs.

... I drive to my job as I have no other choice, atm this is quite hard due to the fact I drive a manual car, but I am looking for an automatic atm ...

I hope it does make life easier for you, but please keep it in the back of your mind that it may not. Our illnesses are different but I too found driving a manual getting tougher and tougher. At times, particularly on longer journeys, I could barely push the clutch down let alone change gear. I honestly thought an automatic would be the answer to my dreams. Logically, you would have thought so. Only a fraction of the physical work, all but point and shoot. As it turned out it was just as hard. I still drive an automatic but the days of long journeys are in the distant past.

Worried33, fair point about the appeal.

Rae and delicarik - have either of you had any driving assessments done to see what adaptations you need?

delicarik - have you looked into Access to Work? If appropriate, they may recommend taxis instead of you driving.

To be honest, Nystagmite, it would never have occured to me that I should. I'll certainly look into it but can't imagine what might help as the problem is more to do with muscle fatigue and being in the same position for periods of time. I think. ...

hi delicarik123

i have pretty much the exact same physical disabilities as you so i feel your pain, quite literally!!

don't give hope on DLA my first one went to tribunal and they ripped me apart and definitely broke more than a few laws, but at the time it was making so ill i decided my health had to come first so didn't take it further but i re applied in April and was awarded HRM and LRC im appealing for MRC at the moment. i think it has a lot to do with which Atosser you see some are more sympathetic than others, i knew the first one in a professional manor as the gp for my service users when i was working so i knew he was tough, i refused to him again and the next one i saw was much more considerate.

i also think it depends if they see you on a good day, because as much as you may explain the variation they always seem to say no variation likely in the report. this time they saw on a bad day so it kind of worked in my favor. have you had a copy of the report, as this will help you structure your appeal. they do recommend an awful lot of aids that they believe you can magic out of thin air which will miraculously fix all care needs, so you need to explain why they are not appropriate for you or the fact that you cant get them.

with regards to access to work be very careful with this research it well, they don't like talking to you without your and your employers details and they expect your employer to pay for any reasonable adjustment, so new chair or desk - employer, speech text recognition - employer. once they have done their assessment of what you need your employers is legally bound to provide these things for you, so if you work in small organisation this can cause a lot of friction so consider it and research it carefully, it is a great way to get your employer to get you the small adaptions you may have been asking for, for some time now though! my JCP adviser was told when they inquired for me by one of their officers that "if it doesn't need to be specially built we wont pay for it" even they were disgusted by the way it works.

but back to my point DLA is trial and error so keep applying im living proof you can get it for fibro, on the note of supporting evidence can you can a letter from your pain specialist and get them to refer you to the pain management programme it is very worthwhile doing. oh and try to avoid taking pregabalin at all costs it makes your weight balloon!

Sorry I can't help with the DLA appeal as I've just been turned down so am in same position but I just wondered if your doctor has ever tested your Vit D levels. The reason I ask is my doctor originally thought I had fibromyalgia as well as CFS as I had severe pain in all my joints, at one point I used to have to drag myself upstairs with the banister. After reading something online I asked for my Vit D levels to be checked and it turned out they were extremely low. I was put on 20,000iu weekly and it took several months but the pain has almost gone completely now.