Why is it so hard for fibro sufferers to get benefits?

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Why is it so hard for fibro sufferers to get benefits?

Postby katz65 » Sat Nov 24, 2012 8:13 pm

Hello :wave:
As I am quite new to the forum, I hope I am putting this in the correct place :!:

I did try for DLA once & it was refused & I didn't bother to reapply as I didn't see the point, this was back in june, I had also thought about appling for ESA, but now can't see if it's worth all the disappointment & heartache that goes with it as I have the depression side of fibro quite bad at times, although I take Citalopram 40mg & this does help keep the worst at bay, if something too stressful comes along I get so bad again :banghead:

Now that I have joined you all on this site & read alot of peoples posts I feel it would be pointless trying again & that we'll just have to manage on the money my partner gets & thats not much :!: I just have to many symptoms going on to work, it makes it even more unbearable for me, even though I loved working :(

SO the question I was looking to get answers from was this " WHY is it so hard for people with Fibro to be accepted for benefits, when there are so many symptoms to it :?:
Although we may not all have the same symptom as each other, we certainly all have plenty of them, which makes living with fibro very hard even when we have good days & we don't always know when mega flare ups can happen :yikes:

I'm probably asking the unanswerable I know but it's worth a try :!: :!:

Hugs to you all :grouphug:
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby Iceskatemum » Sat Nov 24, 2012 8:21 pm

to paraphrase an old ad ...........because the man from Atos he say No!

good point that I'm sure a lot more than you have been thinking!
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby diane1 » Sat Nov 24, 2012 10:18 pm

Hi

I think because theres alot unknown yet about fibro like why and how we get it and therefore how to treat it ,it leaves it wide open for Drs to dismiss it as to how very real and disbillitating it is .

Dont give up though its hard at times to fight but everyone one here will help.

Take care.
Does an elephant with fibro fog ever forget ?
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby Treece » Sat Nov 24, 2012 10:55 pm

I believe its because the medical professionals in this country have not got up to speed on fibromyalgia, my GP doesnt have a clue and sadly that is not unusual. I have been informed by my solicitor that it should not be about the illness, more the impact it has on you as an individual. Once i dropped the label and concentrated on how my life was effected.. i was clearer and finally won my appeals last month (still waiting for the money tho)

Do apply again, this time appeal if you are turned down. I applied in 2007 and was turned down and didnt bother to appeal because... i wasnt well enough !!!! ESA will only be paid if you have worked and have paid towards contribution based benefits. its a means tested benefit therefore if you have not worked and your husband works they may deem that his income to be enough to cover your costs... however, i would still apply and get them to say no... never say no to yourself!!!

It is worth it..... try again and good luck xxx T
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby diane1 » Sat Nov 24, 2012 11:01 pm

Hi

While its true that you might not be elibible for ESA C if you havent got enough NI in and your husband works so ESA IB isnt payable you might be entitled to ESA credits which will then go towards your pension when you are old enough to get it.
Does an elephant with fibro fog ever forget ?
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby katz65 » Sun Nov 25, 2012 12:17 am

Hi
Thank you diane1 & Treece for your words of information :-)

I will go ahead & try again then, but first I'll pay my GP a visit again, cause although he said it was fibro, put me on med & sent me to a rhumy doctor who also confirmed fm, my GP doesn't seem to know all the symptons I recon, as I asked him about fibro fog & he didn't seem to know about it, He asked me to come back in 3 weeks to do a memory test on 5th dec, also to get some more blood tests on the 30th nov..

So I will try & talk to him about claiming again & wheather he will support me in this..

love back to you both xx
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby sue51 » Sun Nov 25, 2012 12:25 am

I am a newbie to this forum although I have had fibro for 8 years. I tried to get benefit help a few years ago, didn't get it and just wasn't well enough to appeal. I then tried ESA and was told that as I was working (even part time), they couldn't even send me the application form as I didn't tick the right box. Apparently I would have had to go on long term sick, lose my job and then they could employ someone to get me back into work!!! I am on my own and can only work part time because of the fatigue and pain, can barely afford the rent and now live scrimping and scraping just to live a very poor existance. Surely as a responsible employee, and not wanting to be permanently off sick should hold some respect? I just want a little financial help to take the stress away and now I hear I will be further penalised in April with 25% of my small amount of housing benefit taken away as I have too many rooms in my rented house! When is it all going to end? The stress is killing me.
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby Iceskatemum » Sun Nov 25, 2012 12:35 am

Sue have you tried for Disability Living Allowance.
At the moment (not sure what happens when the universal allowences come in ) but it is still payable to those that are working as it is to aid you with day to day living. If you have mobility problems and qualify for Higher rate then you may even be able to use the money towards the mobility scheme which allows you to buy/rent a car.
Equally if you require care there are a number of tiers depending on what help and assistance you need.


good luck
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby Flash » Sun Nov 25, 2012 1:52 am

The woman that came out to help fill in DLA forms a year ago, which I didn't get, told me something that I have wondered about for a while. F/M is something that as has already been mentioned as something that not a lot is known about. In benifit terms, F/M, M/E etc have become the new "bad back".

some years ago people were laid of work with a bad back and often got benifits. Many were 'invalided' out of work long term often permanant. It was difficult for specialists to prove wether or not you had real back problems which fraudsters caught on to and claimed benifits themselves.

Unfortunately for us as well as for DWP, many out there are now faking other difficult to diagnose illnesses, F/M being a common one. On an estate where I used to live, 3 single mums, all friends and between 19 and 23 suddenly got all the symptoms to F/M, very severly. They looked it up on the internet and became very "poorly". One came to me, probing for more beleivable symptoms and I told her of some wierd far out symptoms which she obviously had. I would love to have been a fly on the wall when all 3 went to thier different GPs with these odd complaints...

Fluppy Puffy's post on tips for claiming DLA, "DLA top tips from benefits and work sites", is very helpful and logical and everyone should give it a read.

Don't give up. X
Last edited by Flash on Sun Nov 25, 2012 12:43 pm, edited 1 time in total.
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby gimpyphil » Sun Nov 25, 2012 8:46 am

Hi,When you apply for DLA it is of the utmost that you fill the form in properly,there are sites that tell you the way to fill it in or go to your local CAB office and they should help you.If you do one question wrong that will be it for the rest of your claim.
Hope this helps?
Phil.
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby Iceskatemum » Sun Nov 25, 2012 2:21 pm

Flash wrote: F/M is something that as has already been mentioned as something that not a lot is known about. In benifit terms, F/M, M/E etc have become the new "bad back".


I never would wish this on anybody but would love that all the fraudsters had even one day of how we feel.

I also have degenerative spinal problems , so I guess I'm a clear target for the benefits people to say no. Am in the process of filling in my forms so will see if I manage to get anything, this has really made me feel very sick of other peoples motives etc. :evil:
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby sue51 » Sun Nov 25, 2012 6:14 pm

Thanks for the advice. I think it was DLA that I applied for as well as ESA and a lady from the council came out to help me with the form. My health was worse then and unless I take things at a slow pace I will be back to square one again. I also have Sjoegren's syndrome which is an auto immune disease with very similar symptoms to fibro. Oh well I will keep plodding on. Don't think I can cope with anymore rejection. At least I am now in control.

Thanks again.
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby katz65 » Sun Nov 25, 2012 11:06 pm

Thank you everyone for your comments, everything helps :clap:

I am so shocked with what you wrote iceskatemum, to read that some people make up illnesses to claim benefits, this is DISGUSTING & I agree with you, these type of people should just experiance a day of FM & let it be a day with a flare up :!: :!:

:goodluck2: to everyone trying to claim :-)
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby Flash » Mon Nov 26, 2012 12:41 am

ISM, I feel the same, hence giving that woman a list of really daft 'symptoms' to share with her friends and take to their docterss. I bloody sussed them out. My old next door nieghbour used to hobble around on crutches and even use a wheel chair as he was almost "paralised from the waist down" yet he could put up fencing, carry blocks and do gardening when no one was watching, Grrrr!!

With our degenerative coditions though, it's different. They can see it. They've caught on to the 'bad back' now thanks to medical advances. Roll on the day when F/M gets the same attention.

They're coming around... Slowly. :hugs:
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Re: Why is it so hard for fibro sufferers to get benefits?

Postby Iceskatemum » Mon Nov 26, 2012 6:03 am

Katz , its the middle of the night and I have probably picked you up wrong but I didn't think I said anything that was shocking or offensive. I was only take up a point that Flash had previously made that some peope have been known to fake thier FM symptoms just to claim benefits and that due to the difficulty in actually substansiating FM with tests or X rays the benefits people were possibly looking at it with a pinch of sceptisism .....in the way they used to look at bad backs.

Given I have both problems I was tongue in cheek saying that that counted me out with the benefits folk on both accounts ...I hope you didn't think I would make up symptoms ........believe me I have enough of my own without borrowing any more. :lol:

If I have totally got the wrong end of the stick and misinterpreted what you meant, please don't take offence.... blame the fact it is stupid o'clock and my head is muddled. :oops:

In either post I would not want to offend anyone in my wonderful Virtual FM family.

gentle hugs

ISM
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