DLA indefinite awards

I am really worried about my DLA being withdrawn. I feel I suffer in silence a lot because I don't want to make a fuss but of course losing my allowance will make a huge difference to me...

My DLA pays my gas & electric & it is also used for buying things that ease my suffering.

If my DLA is withdrawn I just don't know what I will do because I have days where I HAVE to stay in bed because of the pain and discomfort i'm in.

Does anyone know what is happening to "indefinite" awards...is that just out of the window now & being ignored ?

The worry & stress from this is making me feel ill & as you all now just having fibro is enough to be suffering with but I have other health problems that just aren't visible to the naked eye or Joe Public

49 Replies

  • I meant to say my gas is a comfort when it's cold & i seem to feel it a lot & without this help I will struggle to make payments to my Gas & Electric & be sitting cold

  • Im not sure what is going to happen to the indefinate one Chris-dee but i had to fight to get low rate and now they have sent me a letter to say entitled until jne 2014. Not sure if i will have to fill in any more forms before then though. Like you the weather affects my pain and tiredness and like today i have only gone downstairs to get food my legs are swollen and feel like they are on fire, i cant make up my mind to have the fan on to cool em or off cos then i get too cold.

  • Well my last DLA claim came back with an indefinite award...so I am about as wise what is happening as you are Chris...I took it meant my DLA is indefinite..and not subject to review for some time...Then again with this new Condem Government who knows what is going to happen..I am trying not to panic too much as like most FMS sufferers I need my DLA .

  • Same here I`m afraid,I need more hekp desperatly but too scared to put my head above the parpit.

    I`m 58 and going to see if some one from age.uk (old age concern) will come and see me.

    Hugs Butterflyxxxx

  • I'm not an authority but my friends son has just been awarded it indefinitely too, not for fibro though. I have fibro myself and have already been turned down twice. I'm waiting on another appeal but they're taking a year each time! I've just found out that my gp has told the dla people that there's nothing wrong with me because she thinks fibro is "just all in the mind" apparently I have to just ignore it :( Any advice any of you could give me to help with my very near appeal would be great! Good luck with your issue Chris :)

  • thats awful what Gp ssys and that is obviously big factor why you are not getting it as they getin touch with your Gp i think anyway ????? well i am lucky on that my GpP has told me to apply and i am going to DIAL to help me with forms but still dont hold out much hope will leyt you know , perhaps you should change your GP i woulsd with that attitude towards you it awful love to you diddle x

  • your GP should just look on NHS DIRECT it has a clear description of Fibro and they would not have that on the sight if it was all in the mind rrrrrrrrrrrrrrrrrrrr people with this ignorant attitude make me so mad might I suggest changing your GP

  • Hi TracyE,

    It sounds like you need a new doctor, as i am sure you are aware that everything you are feeling certainly isn't in your head. Your unsympathetic doctor is in no doubt the reason why your DLA is being turned down. I know this isn't good practice but maybe you should stop taking your meds before you go for a medical so that they can see how much pain that you are in. Good luck in your fight against the DLA and i hope you get what you need

    Claris xx

  • Hi TracyE ive just stumbled on you message, and my advice would be change your GP pronto. its bad enf for all of us to attempt to cope with FMS without a GP not being a gp. Also asked your new GP to refer you to Rhemotogist,(dont think ive spelt it right) and your nearest pain clinic some are in Hospital's and see if Accupuncture may help you. Glad you have found here, without question we all know exactly what FMS is. Fibromyalgia Association would be happy to send you info,

    I Do hope you get the support and advice you need. Thank goodness we can be on our own island, as no-one else can truly undetrstand

    take care TracyE

    I would like toThank whoever started this website/forum up, its essential

  • Tracy get rid of your shit gp and find one who is in the 21st century xx

  • i cant understand when people say their doctors dont reconise fibro!..as fybro means muscles and tendons..and myalgia means pain!..so what is there NOT to understand?..we are being fobbed off as dla dont reconise what illness we have but how it affects us,plus dwp say ..that we dont HAVE to have anyone helping us to get the benifit,but how we WOULD benifit if someone did help !! but im dam sure if you said.. oh i just struggle on on my own..and have to manage as i live on my own..dwp would then say ..oh she can manage on her own so doesnt need help!! to me its all completly confusing!..unless someone out there can explain it? xx

  • when i was first awarded dla,i had to re-apply every 3 years,and on a couple of occasions had to appeal the decision.I have now been awarded it indefinatly.

  • Can I ask debs you got it indefinitely have you got fibro?

    And how do you think they came to that decision I am still waiting to hear :( 6/7weeks it's been I don't think that's good x

  • Thank you for trying to answer my question it seems the people who make these decisions are a law unto themselves.

    The worry of this is making my depression much worse & of course has a knock on effect on all my other illnesses.

    It was awful a few years ago when the Government started 'Benefit integrity' tests ... my award was completely removed & I had to fight for months to get it back & now this latest ruling makes me & many others feel like we are being persecuted for being ill.

    I wish that we could be left alone to get on with day to day pain & discomfort without the 'powers that be' making things a hell of a lot worse.

    Moany over ... Thanks for listening & offering me comfort by knowing i'm not alone.

    Have a good day & I hope the sun is shining for you xxx

  • mine was recently up for two years they dont realise our conditions are permanent

    they leave us in fear of changes to income

    ive signed up 4 car on mobilty

    reason being i can control speed over bus whereas bus doesnt making bus journeys really painfull

  • over bumps

  • i prefer to have my own vehicle for that reason bumps and corners!

  • My understanding is that everyone will be reassessed if they are under 65 or will still be under 65 by a certain date. . DLA won't exist when the law changes in 2013 except for children under 16 and those over retirement age who are already in receipt of it . The new PIP will then come into effect and having looked at the guidelines it's very different from DLA , with some of the questions removed and some added.

    I should imagine then, as this is a new benefit , everyone will be assessed for it, even those who are on indefinite awards, such as my autistic son . Daft really. Autism isn't something you grow out of and he has the same needs as an adult that he had when first awarded DLA at age 10.

    That's how I've read it , hopefully someone can correct me if I'm wrong.



  • My DLA has been withdrawn, where i got high rate mobility and medium care i now get low rate care and no mobility, but i'm taking it to tribunal.

  • get to tribunal n fight hard

  • i was on indefinite care mid rate and high mobility ive recently been reviewed dropped to low mobility and still get mid rate care but think care is for different illness

  • I guess we will have to go through the application for the new award although I think it is very unfair if we have been awarded it indefinately which I have !!!

  • From what I understand, we will all eventually be reassessed for PIP and this really has put the frighteners on me. I was so relieved when I got my award "indefinitely", but it goodness knows what lies ahead now. I am particularly worried about losing my Motability car as it is my passport to the outside world.

  • Like you Gracie I am bothered that I will lose my Motobility car, If they try to re-assess me I am going to fight them by saying I was awarded the DLA indefiantely and see what they say !!!

  • To be honest, I don't think they will be bothered. They want to make sure that everyone is receiving the "right amount of benefit". Which in real terms means reducing the money being paid out by about 20%. Sorry, I can't remember where I first saw that figure, but it has stuck in my mind for some reason. still, nothing

  • oops, still nothing has been set in stone yet, so we live in hope...

  • something i have been struggling to get an answer to is: if you are 61 or 64 and in receipt of state pension will you still get reassessed? i have been trying to find out for weeks and the full question is ignored! today i have sent dwp an email asking them to directly answer the question and stop provocating!

  • Hi ChristineEts

    Do you think that we with indefinitely awards will have to undergo a medical too? It frightens me because you can't see what is the matter is with me ...

    I am not a wheelchair user or walk with sticks & a lot of it all boils down to my pride...but it shudn't be like this.

    I feel if you are ill & a hospital consultant confirms it you should be excused for a medical

  • Its really is so unfair for us fms sufferers and I am just about to apply for dla for the first time since I was 16 as was unaware until welfare rights advised me and now I am 44 so have done part time admin work and been really ill throughout my employment, I have taken VR mainly due to health reasons and do hope the GP and powers that be believe my illness is real and makes my life a misery with pain flare ups, discomfort, twitching, chronic fatigue!!!!! aaaaaaaargh

  • mine is up for renewal... only got it in august 11 new form in already for aug 12.. we need to keep fighting this.... i know people who get dla for less than the pain we all go through.. they can go jogging... dancing.. always out socialising... ohhhhhhhhhhhhhhh i wish.... my social occassions are in my bed now... its the only place i feel less pain... but like most of you... we have families and have to get up and keep going for them.... wish there was a light in my body that lite up and show the docs and dla everytime i got a pain somewhere in my body it would light up.... there would be some lights that would stay on all day and night... lol

  • i applied for DLA and was turned down ive appealed but was refused i had to go for a medical for esa and was told im ok even thou i struggle to walk my fibro / ME is so bad some days i struggle to get out of bed im at my wits end with it and feel so stressed out

  • I asked for a straight answer by email, this is what i got:

    From October 2013 any existing DLA recipients, aged between 16 to 64, who report a change in their condition will be reassessed for their entitlement to PIP. This will also apply to claimants whose DLA award is due to be renewed.

    Full national reassessment of remaining DLA recipients, aged between 16 to 64, will begin from January 2014. We plan to have asked all DLA claimants if they want to claim PIP by March 2016.

    was this a straight answer? xxx

  • hi Christine, i think it means that we will all have to go through it again even children and pensioners by 2016. we will be INVITED to apply but if we refuse, we will lose benefits BUT there is no guarantee we will get it anyway. sorry to be so negative but I think it is important that we understand. I have not tried CAB yet but maybe they dont know any more either

  • bit low today! had pains i have never had before and feel very tired.

    hugs to you too. xxx

  • thanks Chris i appreciate the siupport

    hugs to you too xx

  • Thanks everyone for caring & offering wise words of wisdom & comfort. It seems like we will all have to be put through the medicals, questions etc. I'm so fed up with being in pain & worrying about the process.

    Gypsy I hope you feel better soon & to everyone else who is suffering particularly bad at the moment.

    This forum has been such a comfort to me I know I'm not alone now.



  • wish they would award me dla i have been refused twice :( do u fill in the form ya self or do u get some one else to fill it in for u ? xxx

  • i recieve high mobiltity and have a car and lower rate for care im really worried if they take my car off me as i really need it my partner drives it for me and without it i will be screwed as i live in a village and all major shops are miles away

  • Hi like you I am on High mobility and low care I am just about able to work part time with support from access to work I am not able to drive due to my fibro so I relay on taxis and occasionally buses if it is a short trip I can not use a walking stick due to pains in my upper arms and shoulders I work as an Advocate and rely heavily on technology to aid with my memory problems if I lost my indefinite award the whole house of cards would collapse and I would have to give up work and all the problems this would cause. hopefully the political climate will change before to much damage is done

    hang in there everyone

  • Hi Jane,

    I filled the form in myself. I just filled it in honestly & truthfully & hoped for the best. I was awarded it for life then I lost my award letter & applied for a new one & it came back saying my award was indefinitely.

    I really feel as though we are being persecuted because we have illness & just plain & simply could not go to work, even though I would love to go to work & enjoy an honest wage at the end of the week/month I know I can't do it.

    Yesterday I was in so much pain I just sat & cried. I'm taking so much medications & I appear as though I'm coping well but to be truthful I am not, I'm taking sickness pills so that I can have painkillers (Tramadol) & then have to go to bed because of the side effects of the Tramadol.

    The thought of me being put through yet another medical examination complete with stupid questions fills me with dread ... If they stop my DLA I don't know what I will do because it really does go towards helping me with comforts I just couldn't afford if I didn't have it.

    I'm so sorry to hear your predicament to Dark Angel, I am more or less in the same position.

    It feels like I'm on a roundabout & I just want to get off but I can't ...

    I wish this persecution of really sick people should be stopped NOW !!! .

  • Sorry ... rant now over, i'm taking 16+ pills aday & multiple injections but I guess I will still have to go through all the rubbish the DWP put us through & then a refusal at the end of it all.

    A friend of mine filled in a form at the CAB, he has arthritis in his legs & spine & he was refused without even being examined ... just plain & simple NO !! the CAB couldn't hep because they had no free staff to go to an appeal with him.

    When will this madness stop

  • utter disgrace...they have no shame how they treat people it make you want to say do this do that try this..but at the end of the day they just ignore the plain facts..pain illness and basic struggles to cope with such conditions..local cab did the same with me appeal yourself after i had all mobility high and care taken of me after 9 years...what had i had a miracle cure and missed it ??

  • and should of added i had been diagnosed with thyroid problems and copd !! so i was actually worse !

  • I have been searching online recently for answers to this very topic. I have been in receipt of DLA at both highest rates for around 12 years now. I lost my benefit after the first 3 years because "apparantly" due to my doctors report i was not incapacitated enough! I took it to an appeal. I have a long list of illnesses including arthirtis, fibromyalgia,manic depression,i use walking aids to walk and i have various adaptations in the house to ease my daily struggles. At my appeal i had a letter from my doctor with me as well as my two carers, who are my husband and my sister. The appeal board couldnt believe what they were seeing and awarded my benefit back for indefinite period of time. In April i was sent a form to be completed and when my sister phoned to ask why i had been sent it they told her it was an audit and so many claims are pulled at random each year to make sure they are getting the correct beenfit. My form was filled out and also signed by my doctor who also included a statement under the part to be filled in by someone who knows you. I currently have my car though the motability scheme, and am waiting in limbo to see if i am still entitled. I only go out once per week twice if absolutely necessary. If i didnt have my car i wouldnt be able to go out. I cant go out on my own due to my physical disabilites as well as my mental health problems. The most common problem i feel with DLA is that often the form is not enough to explain. At the moment i am spending more time in bed, i am very depressed and have had 3 house calls from GP in the last month...more than i have had in 3 years because i am so down i dont even want to get out of bed. The doctor said that its stress because of the DLA review hanging over my head. If i have my benefit taken off me....i would loose the will to carry on. That is my independance and that is what it is there for. These people just do not understand. My husband works part time - so its not as if we are a family who just wants to sit about. I would love to be able to work....the last job i had when i was still physicall able last 3 weeks and i walked out one day and didnt tell anyone. Doctor says my brain cant cope with stress and it causes a chemical imbalance which then unables me to deal with stress full situations that may be placed on me by working. I live in hope that one day i can return to work but until then i rely on my DLA. I rely on the extra money because i cant work and my husband can only work part time. We dont get any income support we get very little working tax credit, no incapacity benefit - nothing....so they would be aswell putting us on the street in a cardboard box and taking our lives away.....i will be sure to let you know what th eout come is...until then.....i live in the most darkest days with worry!

  • hello Lainey, you could be ME, your story and feelings are the same, i feel as though my life is being taken away from me, and the stress is making me ill, it is good to see that this site is here so we can all help each other emotionally ,but that is'nt going to put food on the table or keep us warm is it. we have to all stick together and try and get someone to be our voice and the more of us, the better. they are playing russian roulette with peoples lives., its demeaning and frightening, and possibly illegal. we need some big lawyer somewhere to fight for the right of the ordinary people. if we all shout out, maybe someone, somewhere will hear us.how can it be that you can be severely ill one day, and fit for work the next. are we ALL committing fraud then? i think I know who the criminals are, dont you .

  • I guess the only comfort we have is support from others here who suffer also.

    I hope things go well Lainey ...(& everyone else on here who feels the same) Big soft hugs xxx

  • I had to come off Tremadol due to the same side affects you have described I then went on to Dyhidrocodine paracetamol and Ibuprofine this seems to help take the edge off the pain with little in the way of side affects hope this helps

  • hi.i'm 99% sure i read the other day on a website that those on indefinite DLA wont start getting reassessed for PIP till march 2015.i hope i'm right,and i'm sure i am because i get middle rate care and lower rate mobility awarded indefinitely and would be fxxxed if i lost that.can anybody verify this please just to double check and make us all feel better

  • Mine has just been denied, I'm gutted! Got the letter on friday stating why I havnt been accepted, to be honest all the reasons where things I am unable to do and they said I could do them without any help when that is untrue and I stated it all on the form! I don't understand or know what to do next, that was the only sorce of income I could get from not being able to work. Can't claim ESA as my husband is self employed,he can't claim job seekers as he has work,I can't becouse I can't do any form of work, can't claim dole or ant sort of income support, don't know what I am going to do, all the benefits I can claim states that you or your partner have to be classed as employed when my husband isn't,he works for himself. It's so annoying! If I could work I would happily,I am made to feel like a scrounger and a looser who can't be parsed working! It's disgusting how us sufferers are treated. Hugs to all xxxxx

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