FIBRO AND DLA: I went to see a pain... - Fibromyalgia Acti...

Fibromyalgia Action UK

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FIBRO AND DLA

bbstport profile image
53 Replies

I went to see a pain doctor today t tepping hill and he has confirmed i do have fibro

i alotold you all about 3 weeks ago i hd been refused DLA so i phoned them as verything on their letter was totally different to my application .

wen i got home from hospial a coupleof ours ago there was a brown nvelope and i remember someone say if it ismall an not thick it is bad news - thisone was like thatso i sat looking at

it thinking about those documentary las weekand it would be bad news for m so i

thought ope it and get all he bad news over with.

i opene it and tomy surprise they saytheyhavenow accepted m aplication for high rate mobiliy and high rate care - i could n blieve it- ichecked my ccou on line and thy have made a paymentfrom may to now and the DLA is till 2014. omg i canot belive it i had to share this with all of you x

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bbstport profile image
bbstport
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53 Replies
demelza profile image
demelza

fantastic news bbsport so pleased for you x

bbstport profile image
bbstport in reply to demelza

thank you

crissy profile image
crissy

Great news x

bbstport profile image
bbstport in reply to crissy

thnk you

bbstport profile image
bbstport

i am really please i ve been off sick for 6 months and i thk i wil lose my job next month as ihve just been on ssp, also, i didh application form myelf adnot by another place however i have a lady coming to fll in my es a form for me tomorrow x

peterlee246 profile image
peterlee246

did you fill in your own dla form or did you get help to fill it in if so please can you tell us who it was as i am realy struggling

peter

bbstport profile image
bbstport

no - i actually completedin mself and my neigbour kept scanning through it with me and w ad and alteed things -i looked at a ew sites on here or hlp ith compleingthe form a what type of questions and answers. 3 weeks ago they said in wa not entitled soi phoned adaskedfor someoneelse to look at it as whatthey put in the letter to me was the total opposite to what i had put on the form

beth2 profile image
beth2

hello that is wonderful news so pleased for you take care love beth xx

bbstport profile image
bbstport in reply to beth2

thank you beth x

dottii profile image
dottii

i am really pleased for you, and that it is quaranteed until 2014 must be very reasuring., Take great care of yourself !

muchy dottii x

bbstport profile image
bbstport in reply to dottii

many thanks Dotti

you take care x

I've just had mine renewed at low rate care and mobility , but I think they ignored the Fibro altogether , I'm considering challenging it as they seem to have ignored most of what I said on the form.

Well done on getting higher award !

xx

Lima6MCT profile image
Lima6MCT in reply to

When I renewed mine I got LRC/LRM but when I appealed and asked for a reconsideration as my condition had worsened considerably since original award (they hadn't even got a report from my GP) plus I also spotted I had worded something wrongly and so put in some more detailed explanation. Like bbstport I got a letter informing me that I had now been awarded HRC/HRM and had it back dated to the date on the renewal application form 5 months previously!

bbstport profile image
bbstport

thank you very muc hen and od luck with yours x

Congrats

bbstport profile image
bbstport in reply to

thanks sammy

nanatre profile image
nanatre

They have ignored everything I put on mine too, everything they failed me for is wrong. So, sent all the forms back today asking them to look again. Fingers crossed. Its so not fair. I am well chuffed for you xx

bbstport profile image
bbstport

thank yo i did not end any more forms i just phoned tod them what was wrong a askedfor

someone else to look at it and it old took a furthr 3 weeks to get accepted not 11 weeks like their letter said i have to tackle the esa form today good luck wth yurs x

suz134 profile image
suz134

Hiya everyone, congratulations on passin dla, just wanted to say i passed mine, i went to appeal thurs but they made me wait for a decision got it in the post saturday. To everyone who has failed......this battle has taken me over 18mths to fight 'n' to be fare i think it was because i had a dr at the appeal who knew fibro 'n' understood it.

I still have to go to another appeal for esa as they r sayin i am fit for work its a joke.

Please try not to get upset i shud know i spent days cryin over it each time i failed just keep sendin in ur forms 'n' get help fillin them in as this does help. xxxxxxx

bbstport profile image
bbstport in reply to suz134

congatulations to you. i agree for all to keep trying for dla - i only sntin and thy said no

i then phoned asking for someone else to view and they said yes. i have a lady coming today to fill in y esa as ssp ends this monh xx

Amanda profile image
Amanda

to those with fibro who got higher rate care and mobility.\are you able to walk at all? i've just sent in my forms.my walking is very limited,i use a scooter and am considering using forearm crutches as im very wobbly if i try to walk.i would be releived if i got low rate mobility.how bad do you have to be to get high rate?

Lima6MCT profile image
Lima6MCT in reply to Amanda

I walk with stick but to go any distance I need the use of a scooter. To meet the criteria of HRM you can be able to walk but it's how you walk and/or what happens when you walk. You could be able to walk quite far but if it takes a very long time to cover the distance you could still qualify. I qualified on severe discomfort (I walk quite slowly as well due to that). I found out that to qualify, regardless of being in constant pain, it's the actual act of walking that has to cause you severe discomfort/increase pain levels.

I originally thought that the fact I was in constant pain was enough to qualify for HRM but when I re-read the criteria I realised that I had to emphasise the severe discomfort I experienced by the actual act of walking. When I put in my appeal I clarified my answer by saying something along the lines of "whilst in constant pain, the act of walking greatly increases my level of pain and causes severe discomfort" . I also gave the distance I could walk before getting the severe discomfort.

You should have a word with your GP about getting an assessment for the forearm crutches (it was an OT I saw for my walking stick) as then you can put on your form that you were assessed as requiring them.

bbstport profile image
bbstport in reply to Lima6MCT

it ws my OT who autorized the sticks fom how or who wit wouldi need an assessment for forearm cruches - are they better than sticks

Lima6MCT profile image
Lima6MCT in reply to bbstport

It most likely be your OT again - Amanda was probably thinking that forearm crutches would be better for her because she's worried about her balance.

Earlier this week I just changed my walking stick to one with an ergonomic (Fischer) handle as my hand was getting sore using the "normal" type of handled stick - I've found it a lot more comfortable to use.

bbstport profile image
bbstport in reply to Lima6MCT

the ones iuse it into r hand r osteoarthritis

sharonissexy profile image
sharonissexy in reply to Amanda

I too can hardly walk, when I do I have to hold on to someone, otherwise I would fall. I also have to use a scooter, and I need help during the night to change positions and go to the loo.

Like bbstport, when I first applied the letter that they sent me was completely different to what I had mentioned in my claim i.e. you have no problems sleeping! When in fact i had told them that I am lucky to get a couple of hours sleep a night!

I sent them a rather nasty letter itemising everything that they said I could do, which I had told them that I couldn't. They rang asking if I would like to appeal or would I like them to look at it again, you can guess what I asked for. So they sent a doctor to access me, and like bbstport they said I would find out in about 11 weeks, in fact I got a letter 2 weeks later informing me that I had qualified for both higher rate.

I truly believe that they turn everyone down the first time, because they hope some people will give up due to the stress of it all, and the length of the forms. So if they turn you down, don't worry AND don't take NO for an answer!!!

Sharon

XX

in reply to sharonissexy

'I truly believe that they turn everyone down the first time, because they hope some people will give up due to the stress of it all, and the length of the forms.' Or DIE before the appeal is finished as in my husbands case!

bbstport profile image
bbstport

yes i can walk but i use sticks- they ask about pain but i cotntly in pain - the ost without stopping fo a rest is 40 yards i then eor sometimes rest before that

hamble99b profile image
hamble99b

I would think that the fact that you are in constantly in pain brings you into the category "virtually unable to walk" . Walking is what people without pain can do at a normal pace, just managing to get short distances in pain and difficulty, is not. Being someone who struggles in pain is not someone "able" to walk. Lima clarifies it well.

hamble99b profile image
hamble99b

congratulations bbstport!

regards, sandra

bbstport profile image
bbstport in reply to hamble99b

thank you sandra

regards

belinda

suz134 profile image
suz134

I walk but it is very limited i use crutches to help me, they watch u when u arrive they said they were watchin me fromt the car for when i went 'n' i said u can i have nothin to hide. x

bbstport profile image
bbstport

how sneaky is that

allyson2663 profile image
allyson2663

fantastic news hun,im so worried about losing mine when the benefit comes into place i cant walk anywhere and totally rely on our mobility car :o(

bbstport profile image
bbstport

how onghve you had it allyson

Congrats, I'm very happy for you bb xx

bbstport profile image
bbstport in reply to

thank you claire

x

teresa-67 profile image
teresa-67

that's great news xx i was awarded dla high and middle rate over 15years ago on my 2nd attempt i was awarded for life before fibro diagnosed i updated them when fibro diagnosed x take care x

Petra profile image
Petra

Well done you.I have had fib. for 5 years, am 64 years old and cannot get dla or a blue badge.i have changed my lifestyle but have spent an awful lot of money on acupuncture which works for me.I have food allergies and medicine allergies and of course no alco is allowed allergies again.BUT AM POSITIVE DESPITE EVERYTHING, my husband of 42 years and my daughter of 36 are both in denial of me suffering from this illness despite a diagnosis at a private hospital which cost me £400.My husband now 68 is now awaiting a hip replacement which will happen on the 5th October.2012. Shady

lynnh profile image
lynnh

Congratulations to all who have succeeded in getting there awards. Is it just my imagination or are there more people starting to win x

bbstport profile image
bbstport

seems likeit good luck to all x

nicely profile image
nicely

THIS IS MY STORY.......i got awarded high rate mobility and high rate care as i too suffer with agrophobia and panic attacks as well as ostearthritus and bilatreral odema in both legs which was making me very breathless on minimal exertion and fibromyalgia am virtually housebound if it wasnt for my carer or family taking me out in the car cannot drive even because of sleep apnea so life has changed dramatically after being told i was to ill to work at a lovely jewellers job by my employers ot assessment of which i agreed i used to get low rate care and low rate mobility that was rewarded in 2010 by a tribunal, over the past couple of years my health detoriated and i asked the dla to consider this as i could hardly walk a step without awful pains in legs and feet not to mention the giddy attacks and breathing difficultys they put up the mobilty but didnt change their decision on the care even though i needed help to get in and out of the shower help to get in and out of bed and up and down the stairs to the loo and help to even get out of a chair i had a ot and she recommended me a bed stick, recliner chair, and a toilet frame and because of a lack of funds, from the council i have had to wait for a walk in shower and a stair-lift that was now 13 months ago should be getting this within the next couple of weeks, anyway i had to go to a atos medical just before christmas and was put immediatly on the support group so i phoned dla and was advised to re-apply and i would still be able to go to the tribunal about the back pay i did they also wrote to my doctor who told them my symptoms were severe and they put it to high rate care and i still get high rate mobillity for indefinatly if only they would of just wrote to my doctor in the first place. I went to the tribunal nearly three weeks ago and was treated absolutly appauling by the panel who told me to either go home and rethink if i still wanted to appeal or have it today and risk my benefits being lost or forget it all together i said i felt strongly about it and would like to get it over with because its been a long while, i had evidence from my consultants my ot and took my new change of benefits which they said they didnt have although i sent it to them i was told by the judge she couldnt see anything wrong with me as was touching my necklace ok, i said im very nervous she said people who have painful hands wouldnt be able to do that i couldnt even swallow i felt that nervous i asked if i could have some water she said help yourself i did and couldnt even lift the jug without knocking the paper cup of water over i said i am sorry its because my hands cant lift very well i tried to mop it up with a tissue. i felt that stupid the doctor was saying it looked as if i had breathlessness because i was overweight i lost about 3 stone in just over a month due to having a gastric bypass to help my health,so the judge just sat there writing the doctor asking me if i had any other wrong me apart from fibromyalgia (obviously knowing nothing of the agony it causes) and osteoarthrtis and sleep apnea i was so nervous and fibro fog i said no not mentioning of anxiety and agrophobia and giddieness i suffer i felt extremley bullied by them its bad enough for me to face the outside world as it is without being treated as if i was a liar, anyway i was asked to leave whilst they made their decision when i was asked to return they must of moved the large chair that i was sitting on near to the table i was unable to sit in it and i struggled to move it back so i could sit down, to be told by the judge that i was going to lose my dla from 2 years ago for both components because i dont meet the criteria i asked her how they came to that decision she said your hands cant be that bad as you tried to mop up the water i spilled on the table and she told that it was a unanimous decision and have other people to see not giving me a answer. When we got back to the car i noticed i was bleeding from my operation wounds after struggling with the chair it has made me so upset and petrified of the outside world and threw me into deep depression i phoned the dla last week and they told me the decision maker has decided that they are still paying my high rate care and high rate mobility as i reapplyed so it wasnt from jan this year it was the 2 years before although that decision was made at a tribunal court who actually saw me 2 years ago . The dla have advised me to send to the upper tribunal to reconsider because the judge didnt give me proper reasons i have only got a week more to do that its made me feel so upset and physically ill since and have not been able to get hardly any sleep because all the worry this has caused me the only trouble now is that i can send the upper tribunal this letter but no way can i physically and mentally go to another tribunal.do i have to attend or can it be dealt with my absence? p.s this letter has took me nearly all evening to type as my hands are so stiff and ache.

bbstport profile image
bbstport in reply to nicely

omg this is absolutely disgusting that youhave been treated by this - they do not undertand what you are going through - they need to spend day in your life and maybe then they would understand and look at things differently. the way you have been treated has totally disgusted me.

good luck

belinda

nicely profile image
nicely in reply to bbstport

I know belinda i cant beleive it either its pushed me back i have lost my confidence i know that i am going to put it all on paper and send it to the upper tribunal but there is no way i can be there i would rather let them have the money back not that i can afford it then have to go through that again.Its been good to air off thanks belinda for your reply. jackie

bbstport profile image
bbstport in reply to nicely

no prblem, any time. this board i good i have onlybeen using it a few week myself.what area of the country r u in ?

nicely profile image
nicely

i live in canvey island essex where do you live?

bbstport profile image
bbstport in reply to nicely

stockport near manchester

nicely profile image
nicely in reply to bbstport

I know my old company i used to work with had their head office there and they used to send people from there to train the staff

bbstport profile image
bbstport in reply to nicely

wht compay was that

lynnh profile image
lynnh

OMG did you have to go to Basildon that's where I have to go for my esa tribunal, although saying that I won the last one mainly due to the Dr in attendance or my paperwork (which they also said they hadn't got, had to give them copies so they had to write to me re there decision). I am a little condused as you say that the decision maker has awarded and backdated your new claim so why do you still have to appeal.x

nicely profile image
nicely in reply to lynnh

i originally asked dla to consider for a higher care rate but they refused so i appealed and have been waiting 13 months for it to be heard, but last december i had to go to atos about a esa assessment and the atos put me straight on the support group i phoned dla up to tell them and they said i could put in for a higher rate because there was proof of a change in my circumstances i filled in a new form i was granted high rate on care which started in january i was already getting high mobility i was told the tribunal will still be able to go through about the back pay of the 13 months while i waited to see the tribunal. Since the decision of the tribunal the decision maker looked at it again and has not changed it from january this year but the 2 years before january the tribunal said i didnt meet the criteria but ironacally i went to basildon tribunal 2 years ago and won it i was on low rate care and low rate mobility they saw me then and how can a tribunal of this time stop it. my health has really deteriated over the past 2 years

lj3627 profile image
lj3627

Worth reading......

andyworthington.co.uk/2012/...

lynnh profile image
lynnh in reply to lj3627

have just spotted this, Interesting read. Several people have left comments including a girl reporting her encounter with atos so have furnished Andy with details of my case history lol

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