DLA turned down - don't understand why?!

cateblanchett

First time poster - so hope I'm doing this right. I have something called Ehlers-Danlos Syndrome (hypermobility type) - this causes joint pain and hyperextension, muscle pain and ridiculously easily injured (eg by turning door handle the other day - made my thumb click out!), i have had repeated surgeries, including for prolapsed internal organs which took 18 months to recover from, am currently having intensive physio and waiting for place on pain management course. once that's done, hope to retrain and get off these benefits so I can stop being treated as a liar all the time. Had a particularly bad fall in Nov 2009 and now waiting for further surgery. I have been on long term IB since Feb 2008 when I finally gave in and applied for it. My marriage has now broken up and I am really struggling with doing stuff for myself without my husband's help. I should have applied for DLA years ago (at same timeas IB) but didn't want to be labelled disabled - but applied recently because I really need teh money from it to pay for people to help me with the stuff I can't do myself (ie what you're supposed to use it for!). I filled in the form entirely honestly (despite other EDS sufferers telling me to do it based on my 'worst day' because 'eveyone does that'), I didn't want to tell even the smallest lie, so told the complete truth and gave lots of explanation. the condition does fluctuate, that's what it's like, but on my best day I am still a substantially disabled 37 year old and can never do things like cook a main meal. on the fomr, where it lists the tasks associated with cooking, I explained i couldn't do any of them due to severe pain and that if i tried I risked injury, and cited cases where i had tried and had ended up with things like my wrist clicking out, scalded myself etc. i also explained that i had frequent falls and dizzy spells due to EDS and supplied reports from both my rheumatologist and physio confirming lots of detail, including about falls and being unable to performt he cooking task.

I have had a letter this morning refusing me any DLA at all! I can live with not getting any mobility, since on a good day i can walk up to 400m (although when I have flare up or after a fall, i can be confined to the house for weeks at a time). I can just about accept not getting higher rate care because my needs fluctuate - i can be bedridden one week, and reasonably independent the next. but I fall or almost fall on a daily basis, and i haven't been able to cook a meal for almost two years - i live on cereal bars and milk. i only get proper food if my mum cooks it for me.

the letter states that 'you don't need help to use kitchen tools, carry and lift safely, plan a meal or motivate yourself. Although you have difficulty with standing, you can sit from time to time when preparing a cooked main meal for one person. You don't need help to prepare a cooked main meal for one person.' It also states that I am 'not at risk of falling, not as risk from dizzy spells or blackouts. You can take reasonable precautions to prevent any dangers.' my condition gives me palpitations and low blood pressure (and therefore dizziness) every time I stand up. my weak joints give me very poor balance. in the last few weeks I've fallen getting out of teh bath, going down the stairs, and after standing up from the sofa when I landed on the coffee table and injured myself so badly i've been stuck inside ever since. the only precaution i can take to not fall is to never stand up!!!!

please advise - is this normal behaviour for ATOS when they assess DLA? also, my IB reveiw has come up and i've sent the form back and heard nothing - are they going to turn that down because they've turned down my DLA? Since the letter from ATOS directly contradicts what I've written on the DLA form, I am concerned that they have refused it because they think I'm lying - but i've just waded through it again, plus all the evidence i've sent and it's all true! but if they think i'm a liar, presumably that means they'll refuse my IB??? I have asked for the decision to be reviewed and they said to write and explain why I think it's unfair, but I can only reiterate what i put on the form but just put more detail - so i can't see why they will say yes this time...

sorry - really panicking now - any advice would be gratefully received.

Indie_Kid

Have you got any evidence that states what you said on your forms?

ash4becks

cateblanchett wrote: »

First time poster - so hope I'm doing this right. I have something called Ehlers-Danlos Syndrome (hypermobility type) - this causes joint pain and hyperextension, muscle pain and ridiculously easily injured (eg by turning door handle the other day - made my thumb click out!), i have had repeated surgeries, including for prolapsed internal organs which took 18 months to recover from, am currently having intensive physio and waiting for place on pain management course. once that's done, hope to retrain and get off these benefits so I can stop being treated as a liar all the time. Had a particularly bad fall in Nov 2009 and now waiting for further surgery. I have been on long term IB since Feb 2008 when I finally gave in and applied for it. My marriage has now broken up and I am really struggling with doing stuff for myself without my husband's help. I should have applied for DLA years ago (at same timeas IB) but didn't want to be labelled disabled - but applied recently because I really need teh money from it to pay for people to help me with the stuff I can't do myself (ie what you're supposed to use it for!). I filled in the form entirely honestly (despite other EDS sufferers telling me to do it based on my 'worst day' because 'eveyone does that'), I didn't want to tell even the smallest lie, so told the complete truth and gave lots of explanation. the condition does fluctuate, that's what it's like, but on my best day I am still a substantially disabled 37 year old and can never do things like cook a main meal. on the fomr, where it lists the tasks associated with cooking, I explained i couldn't do any of them due to severe pain and that if i tried I risked injury, and cited cases where i had tried and had ended up with things like my wrist clicking out, scalded myself etc. i also explained that i had frequent falls and dizzy spells due to EDS and supplied reports from both my rheumatologist and physio confirming lots of detail, including about falls and being unable to performt he cooking task.

I have had a letter this morning refusing me any DLA at all! I can live with not getting any mobility, since on a good day i can walk up to 400m (although when I have flare up or after a fall, i can be confined to the house for weeks at a time). I can just about accept not getting higher rate care because my needs fluctuate - i can be bedridden one week, and reasonably independent the next. but I fall or almost fall on a daily basis, and i haven't been able to cook a meal for almost two years - i live on cereal bars and milk. i only get proper food if my mum cooks it for me.

the letter states that 'you don't need help to use kitchen tools, carry and lift safely, plan a meal or motivate yourself. Although you have difficulty with standing, you can sit from time to time when preparing a cooked main meal for one person. You don't need help to prepare a cooked main meal for one person.' It also states that I am 'not at risk of falling, not as risk from dizzy spells or blackouts. You can take reasonable precautions to prevent any dangers.' my condition gives me palpitations and low blood pressure (and therefore dizziness) every time I stand up. my weak joints give me very poor balance. in the last few weeks I've fallen getting out of teh bath, going down the stairs, and after standing up from the sofa when I landed on the coffee table and injured myself so badly i've been stuck inside ever since. the only precaution i can take to not fall is to never stand up!!!!

please advise - is this normal behaviour for ATOS when they assess DLA? also, my IB reveiw has come up and i've sent the form back and heard nothing - are they going to turn that down because they've turned down my DLA? Since the letter from ATOS directly contradicts what I've written on the DLA form, I am concerned that they have refused it because they think I'm lying - but i've just waded through it again, plus all the evidence i've sent and it's all true! but if they think i'm a liar, presumably that means they'll refuse my IB??? I have asked for the decision to be reviewed and they said to write and explain why I think it's unfair, but I can only reiterate what i put on the form but just put more detail - so i can't see why they will say yes this time...

sorry - really panicking now - any advice would be gratefully received.

i have hypermoblity syndrom with you no is related so i no the issues you have to a degree, there is another member on here with eds shes 24 , have you ever went to the clinic down london to see the leading speclist might help support your claim more,

doing a diary of how you are may also really help to show what you have problems doing

did you get anyone to fill in the forms for you like CAB tbh from what you have wrote i dont think they may have been filled into fit the dwp cretria there really funny over there buzz words to fit the care and mob needs annoying i no but appeal and dont give up

i no eds is on there accepted list cretria but reffered to there doctors because of how rare it is so the docs that may have looked at this may not how know much about this

chin up hun x

ps yes this is very comman to deny dla on the 1st time of asking

zzzLazyDaisy

You need to appeal this decision.

The time limit is tight, so you should write to the DLA straight away and tell them that you wish to appeal, and that full grounds and supporting evidence will follow once you have had the opportunity to seek professional advice.

Then get help to deal with the review from a welfare benefits adviser, cab worker, or DIAL.

Also, you need evidence from your medical advisers about your condition. They can't say how it affects you on a day to day basis because they are not there to see it, but what they can is that the problems and difficulties that you are experiencing are consistent with your level of disability (assuming that is their view). You need to make an appointment to see you GP/Consultant/OT and talk them through it, so they understand what the problems are.

hope this helps

lyniced

Basically you have to write as if it was your worse day - I initially only got the lowest amount, but went to appeal and got the higher on both components. Good luck!

Prinzessilein

lyniced wrote: »

Basically you have to write as if it was your worse day

No, you do not!

You need to write about an average day.

I was initially refused DLA. I had help from DIAL. I kept an honest diary of how my condition (ASD) affects me, and brought it to DIAL. They asked a few questions and gave me their honest assessment - that I should be entitled to Care and Mobility at Lower Rate. They dealt with all aspects of the reconsideration(refused again) and appeal (success!.... Lower Rate, both components as DIAL had said!)

It is a struggle, and I sometimes feel that they don't read your first application (the grounds they initially gave for refusing me didn't seem to be about me at al!) ....but you need to be persistent and completely honest!

cateblanchett

Bit confused about how to reply - hope this is right.

Yes, I submitted medical evidence - copies of letters i had from my rheumatologist and surgeon, plus my physio filled out the page where they give the chance for the person who treats you the most to say what your problems are. My GP was completely unhelpful when I asked him about supporting my application and said that whether or not I got it wasn't up to him. The only thing I can think of is that where I said I had difficulty with doing things - I actually meant I really can't do them because it hurts so much and I end up injured - but I was being rather stiff upper lip about it. maybe they have taken this to mean that it is difficult for me to cook but i can do it in the end - which is not the case. also, my physio said the following: 'Ehlers-Danlos Syndrome (hypermobility type) - musculoskeletal symptoms with fatigue. This results in limited daily activiy which does fluctuate but affects all aspect of activities of daily living and social interaction.' Maybe this was just not detailed enough?

The only further evidence I can conceivably give them is to ask the physio to specifically confirm that I do fall, can't do the cooking task etc, and to beg my GP to also confirm this, and to write my own letter disagreeing with the bits of their judgment that contradict reality and just give more detail and make my language stronger - what do you think? My only concern is that they won't believe me because they'll just think I'm now exaggerating to try to overturn their decision - sorry - this whole think is making me really paranoid!

thank you all for your help

ash4becks

cateblanchett wrote: »

Bit confused about how to reply - hope this is right.

Yes, I submitted medical evidence - copies of letters i had from my rheumatologist and surgeon, plus my physio filled out the page where they give the chance for the person who treats you the most to say what your problems are. My GP was completely unhelpful when I asked him about supporting my application and said that whether or not I got it wasn't up to him. The only thing I can think of is that where I said I had difficulty with doing things - I actually meant I really can't do them because it hurts so much and I end up injured - but I was being rather stiff upper lip about it. maybe they have taken this to mean that it is difficult for me to cook but i can do it in the end - which is not the case. also, my physio said the following: 'Ehlers-Danlos Syndrome (hypermobility type) - musculoskeletal symptoms with fatigue. This results in limited daily activiy which does fluctuate but affects all aspect of activities of daily living and social interaction.' Maybe this was just not detailed enough?

The only further evidence I can conceivably give them is to ask the physio to specifically confirm that I do fall, can't do the cooking task etc, and to beg my GP to also confirm this, and to write my own letter disagreeing with the bits of their judgment that contradict reality and just give more detail and make my language stronger - what do you think? My only concern is that they won't believe me because they'll just think I'm now exaggerating to try to overturn their decision - sorry - this whole think is making me really paranoid!

thank you all for your help

no you fight for this many of people here do, i get higher rate care and lower mobilty probs mostly for mental health but some is physical aswell, atm iam fighting for higher rate for the moblity you can add as much everdance to your claim as you like, you might get some good advice from here lot of heds suffers on here,

http://www.hypermobility.org/forums.php

i have a feeling they either havent contacted anyone you put as support on your claim which does happen :mad:, or they have took the cheap option and went to the gp that has been useless mine wasnt to helpful mind either, there not keen to go to the consultants as it costs them alot more for report

what i have done is get letters of anyone that i see with regards to my condtion ask for what issues is have and ask for them to put in writing how they expect this to effect you or better still get a appontment to see them and tell them your care and moblity issues, where in the body and then ask if they will support the applaction

Mojisola

It's no good filling in the forms describing an average day if, on a bad day, you are confined to bed!

You need to get help appealing the decision. A diary is a good idea so that you can give accurate answers to the questions. You can then say - on a bad day, I'm like xxx; on a good day, I'm like xxx; and on an average day, I'm like xxx; and I have approximately x good, x average and x bad days in a month.

dmg24

lyniced wrote: »

Basically you have to write as if it was your worse day - I initially only got the lowest amount, but went to appeal and got the higher on both components. Good luck!

Really bad advice, and quite possible to end in a fraud investigation.

Mojisola wrote: »

It's no good filling in the forms describing an average day if, on a bad day, you are confined to bed!

You need to get help appealing the decision. A diary is a good idea so that you can give accurate answers to the questions. You can then say - on a bad day, I'm like xxx; on a good day, I'm like xxx; and on an average day, I'm like xxx; and I have approximately x good, x average and x bad days in a month.

This is spot on.

Prinzessilein

Mojisola wrote: »

It's no good filling in the forms describing an average day if, on a bad day, you are confined to bed!
/QUOTE]

Filling in an 'average' day is the only honest thing to do!

As I explained, I wrote out a diary....so I could say that was housebound on x number of days over a fortnight....that I lost my balance on y number of times et.c.

Obviously, every day is different, but that is precisely why you go for an 'average' description.

I had to fight for my award - with the help of DIAL - but I was completely honest throughout, and got the award I believe is correct.