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Date: 10.10.2010
From: Sandra Blair

Subject: my DLA has been taken from me completely

Ive had arthritis for 18 years now. Have went thru all the drugs and had joint injections, pins in my toes. Also my toes broke and reset. Im now receiving remicade every 6 weeks. I go into hospital for half a day and have the drug thru infusion. Im devastated as got a letter to say my dla has just completely terminated. Havent slept since Friday . ANY advise would be helpful
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Date: 10.10.2010
From: jupiter

Subject: Re: my DLA has been taken from me completely

hi sandra blair


thats really sad to know
have they said why they stopped it?

they should have examined you before doing that and not do it all of the sudden like that?
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Date: 10.10.2010
From: Lynn B

Subject: Re: my DLA has been taken from me completely

Hi Sandra, Did they not give you any reason at all why they stopped It? Did you only get It for a certain amount of time(sometimes they only award it for 2 or 3 years, and you have to reaply). I think you should ring them asap and ask why It has been stopped.t.c.
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Date: 11.10.2010
From: KayJay

Subject: Re: my DLA has been taken from me completely

I had to send a form in to say if things had changed. I just put no. Not heard anything back yet will update when I do.
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Date: 11.10.2010
From: sandra blair

Subject: Re: my DLA has been taken from me completely

Just spoke with them today they said my own doctor whom i NEVER see as I attend hospital gave a letter and also the doctor they sent me to. I cant understand how they came to this decision. The girl has advised me to sent further medical reports in and they will have a look but to me ive lost it.
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Date: 11.10.2010
From: KayJay

Subject: Re: my DLA has been taken from me completely

That's disgraceful Sandra. When they refused me the 1st time I went to a Citizens Advice Bureau. I had to go to an appeal meeting and the CAB lady even came with me - but they still refused. So the CAB lady filled out my 2nd application and then I got it. Why not try a benefits / disability organisation or at your Citizens advice centre ? When you have back up it gives you more strength to fight them.
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Date: 11.10.2010
From: Lynn B

Subject: Re: my DLA has been taken from me completely

Sandra,I totaly agree with kayjay dont let it go,get as many medical reports from the doctor at the hospital as you can and send them in. If they still refuse THEN APPEAL Like kay says get the CAB to help fill it in.... But dont give up!!. T.C.
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Date: 13.10.2010
From: janie vallance

Subject: Re: my DLA has been taken from me completely

hi, i've just read your post - the same thing has happened to me :( i was getting the middle rate care and highest rate mobility, i put in a renewal claim and as my RA has got worse in the last 4 years i was awarded the highest rate mobility and care. i checked my bank today to see a small amount had been paid from dwp, as i'm not due to be paid until next week and it was for the wrong amount, i rang them. i've been told that it was a final payment and i am now no longer entitled to claim and to ignore the previous letter with my new award in it. although helpful the woman was unable to tell me why the claim has been stopped and told me to wait for a letter from them explaining it - the letter was sent out 6 days ago but i haven't received it yet. so, now i'm in limbo - i don't know why i'm not entitled and can't appeal until the letter arrives :(
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Date: 13.10.2010
From: S

Subject: Re: my DLA has been taken from me completely

That's shocking! I can't believe they would stop the payment without telling you. Many peeps rely on it. Why don't you go to your MP! I thought if you got the highest care rate you were a bit protected....?
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Date: 13.10.2010
From: KayJay

Subject: Re: my DLA has been taken from me completely

Shocking indeed !! Could it be the new Government flexing their muscles to save money ? If so I fear there will be a lot more posting here with the same headline !! Me included ....... watch this space .....
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Date: 14.10.2010
From: sandra blair

Subject: Re: my DLA has been taken from me completely

Thank you all for your kind comments and advise. Motability have been very good. My consultant is doing a letter although Im not confident ill get it back.
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Date: 15.10.2010
From: KayJay

Subject: Re: my DLA has been taken from me completely

Update. The DLA rang me this morning out of the blue asking me questions like have I got any surgery planned ? said no the surgeon won't fuse my ankle due to inflammatory Arthritis diagnosis and what meds am I on [ forgot to tell her about the prescription painkillers, doh ]. Anyway when I sent my claim in I just put nothing had changed from the previous claim trying to make it as simple as possible. I thought I would let you all know this as they might be doing this now so you will be better prepared than I was !! . Will update again when I hear something.

Sandra good luck with yours ;0)
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Date: 15.10.2010
From: Lynn B

Subject: Re: my DLA has been taken from me completely

Thanks for that info kayjay, I wish you good luck with your claim, How are you? havent heard from anyone in a while, hope you are keeping well. T. C.x
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Date: 15.10.2010
From: KayJay

Subject: Re: my DLA has been taken from me completely

Yeah I'm fine Lynn been on the Hydroxy for 7 months and it seems to have slowed it down a bit - still get stiff/tired etc but no new severe swellings [ just a little in my wrists ] . My right foot is hurting now though so will have to see what that is all about when I go to see the Rheumie next month [ they have cancelled 2 appointmants up to now ] so I should say ' hopefully ' next month ;0)

Are you OKAY ?
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Date: 15.10.2010
From: Lynn B

Subject: Re: my DLA has been taken from me completely

Hi kay, not doing to bad right now, had a realy bad time over the last few weeks but I am feeling a bit better ( thank god ).I am hoping this new drug works fingers crossed, and time will tell. Is It the same foot or the other one? Hope Its not the other one you could well do without that. T.C. xx
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Date: 15.10.2010
From: KayJay

Subject: Re: my DLA has been taken from me completely

No Lynn its my right foot that's starting to hurt. My left foot is knackered I have a bone spur right near the ankle so can't bend it to walk. The Ortho said I must have fractured it years ago when I had a fall and it must have been missed by the A+E. He won't fuse it now because of the IA diagnosis so I have to wear an Orthotic lace up boot for support. Trouble is my ankle is going very thin and wasted. I really hope the right one will be okay otherwise I'm in trouble !!

Thanks for asking - glad to hear you are feeling a bit better ;0) xx
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Date: 17.10.2010
From: Dorry60

Subject: Re: my DLA has been taken from me completely

First of all send in an Appeal against the decision. Then go to Citizen Advice or Money matters, they in turn will set the wheels in motion to dispute the case it will go to appeal service Now called DCA. where three people will decide if you should get it returned. the three people will be 1. member of Benefits Agency. 2.lawyer 3.Dr. they will ask questions it is not scary they are usually very nice. be guided by the rep from CA. or money matters. Hope this helps. You must challenge this.
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Date: 25.10.2010
From: elaine james

Subject: Re: my DLA has been taken from me completely

i was getting the higher rate dla for my daughter who is now 6yrs old as she has juvenile rheumatoid arthritis. when i had to re-apply after 3yrs, i was told that because her condition is now under control with medication that she is not entitled to it anymore! my daughter still has arthritis & will have for a very long time, if not for life. i asked them to look at their decision again & appealed, they came back with the same answer
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Date: 26.10.2010
From: Angela

Subject: Re: my DLA has been taken from me completely

Hiya Sandra, I can not believe this has happened to you how terrible.
What really pisses me off about this (excuse the french) is people that have genuine cases will be put right in the firing line, and the stress it will cause will be awful.
You can bet those false claiments know how to work the system anyway, and will still get their money.They never lose.
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Date: 26.10.2010
From: sandra b

Subject: Re: my DLA has been taken from me completely

Angela you are correct. My pains have flared up with the stress. CAB have told me to fight it and they will support me. How da hell does the fakers do it and may I add,get away with it. So unfair. ;-(
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Date: 12.01.2011
From: lorraine

Subject: gone from high mobility and care

now just low care i wasnt going to appeal but medical from atos wrong also my father died 10 weeks ago of ra beacause he got nemonia and had stroke in my report it stated just lost father due to short ilness 14 years he suffered whats that to do with my ilness what he forgot to to put in there was my cousin on my dads side has
ra my dads mother had ms i have ra deppression anxiety and i have to have people help me plus fatigue i want my independents
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Date: 12.01.2011
From: Amy

Subject: Re: my DLA has been taken from me completely

Im sorry to hear your going through all that! I've been awarded it for 2 years but I really think that after the 2 years I probably wont get it anymore even though I can't see me getting better. Suppose we will just need to wait and see. Fight the decision and don't give up! a lot of people don't understand RA and good/bad days. Hope you get it sorted soon! x
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Date: 12.01.2011
From: LUCY

Subject: Re: my DLA has been taken from me completely

Hi there, I had this happen to me. Within 3 weeks I'd lost my benefits and my motability car. I was devastated and my independence gone. I appealed which took 6 months and had my benefit re-instated - no appology, and then had all the hassle of re-ordering my car. DONT give up, appeal and speak to CAB for advice and help with the process. Good luck x
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Date: 22.01.2011
From: lorraine

Subject: Re: my DLA has been taken from me completely

ive cancelled my appeal. cant put up with stress and deppression. will make ta worse.good luck to all of you going for it dont give up
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Date: 26.06.2011
From: Paula

Subject: Re: my DLA has been taken from me completely

Hi Sandra. Same thing just happened to me. Am devastated. Did you get it back? Paula
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Date: 26.06.2011
From: Paula

Subject: Re: my DLA has been taken from me completely

Hi Janey. Same thing just happened to me (benefit suddenly not renewed). Am devastated. Did you get yours back? Paula
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Date: 26.06.2011
From: Lee

Subject: Re: my DLA has been taken from me completely

That is bad.

My GF was on top rate for Epilepsy and they have got worse etc and the DLA have reduced her benefit as well.

I just dont know how they can justify either removing it or lowering it when nothing has changed or things have got worse.

Need to appeal and speak to DLA and Hospital to see if they can write letters to support your appeal.
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Date: 27.06.2011
From: Dilizjo

Subject: Re: my DLA has been taken from me completely

I am in the process of appealing my first DLA claim guys and as many of you have said it is taking away out independance and making us prisoners in our own homes except for the visits to the GPs or the hospital, which cost us tremendous amounts. Reading this thread really angers me as there are people out there getting high rate DLA and mobility due to addictions which are self inflicted conditions.
It is getting to the point where we need to start making a stand to educate the government as to the realities of RA, because in my humble opinion they are seeing the word Arthritis and assuming it can be kept under control to a working level, they have no understanding that it is a condition that is with us for life through no choice of our own and even though we are treated with medication (which in a lot of cases makes us feel worse with the side effects) it does not kick in with any beneficial results for months and actually only slows down the disease.
I think I may start an online petition and am definitely going to write to my MP and David Cameron.... Surely this government is in contradiction of our basic human rights to live a safe, independant life with dignity.
Oh dear ranting again:(
take care all xx
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Date: 27.06.2011
From: Lee

Subject: Re: my DLA has been taken from me completely

I think thats a good point as this is something out of our control.

We never asked for it or caused it through doing something like alcohol, drugs or a different addiction etc but those who have addictions etc get all the help and support they need whereas those with a disease out of their control get punished.

Least with an addiction the meds to substitute whatever the addiction was are quicker reacting and generally work unlike our meds which are trial and error.

The government doesnt take it seriously as thinks its an "Old Age" thing that is just one of those things and they are ignorant to how severe it actually is and how bad it affects us.

The only way it would get a more indepth look and help would be for one of them to have it and then all of a sudden it would be high profile and things would get done
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