Refused or Appealing DLA Decision/Post here

[laracomps]

So sorry superstottie, i meant to reply yesterday as soon as i read this, but my memory failed me (predicatbly!)

I felt your pain reading that, as you will know i've been there and it's an awful awful place to be.

It feels so easy to give up, but you have to keep fighting the b*****d. xxxx


I'm almost at the place where I feel I need to tell them I've gotten worse, even though I haven't if you see what I mean. I've just become more mindful to it, and pacing myself more which of course means doing less a lot of the time, and I've also started to use a wheelchair. How they can still say I can walk without discomfort and/or pain is beyond me. But I bet they will.

We're all in this together. It was the support on here that got me through

[cat]

So sorry superstottie & others don't give up!! xx

[Superstottie]

Well I managed to ring them. Asked for a copy of the GP report and was told that they only have the information that I sent in with my claim form. I was a bit confused as I rang a few weeks ago for an update and was told that they had written to my GP on the 24th Aug. The 8 week deadline was the 12th Sept and got letter few days before saying they were sorry I hadn't had a decision yet and they would get back to me as soon as possible (I thought they were waiting for GP report) Turns out GP never replied so they got the advice of their healthcare professional and decided that EVERYTHING I had put on my form was a lie! I feel disgusted that they can do this - someone who has never seen me can give advice on my situation?? HEDS in my mind is a spectrum, much like Autism, how can someone decide how disabled I am by my diagnosis??

So I have asked for a reconsideration, am going to see if I can get GP to send form back, but might have to get them to send a new one to my new GP as I have just moved house and practices! My OT is coming out on Thursday so I will ask her for a report on my care needs as she is lovely and understanding and actually researched the condition as she had no knowledge of it (if only the medical world would do this....) I am going to try and get as much supporting evidence in as I can and show them up for what they are. I find it frustrating that they are allowed to treat us like this!! Why make the decision if they don't have all the information they have requested? I am tempted to ask them what medical background their healthcare professional has, surely it should be someone with a knowledge of connective tissue disorders?? Doubt it!!!!!

Thanks to all of you for your kind words - and any advice you could give me to beat the b*******s would be gratefully accepted!

Oh and I am going to try and get hold of the local disability benefit advice people, but they do seem rather hard to get hold of!!

[star gazer]

Hi superstottie, did you use the info on the benefit and works website to help you fill in the form? I am in the middle of redoing mine (renewal) I was turned down on the first application then reapplied and got hr mobility, my first application was not very well filled in, I made the error of talking about what pots is madically but did not really discus how it affected me on a daily basis (Ithought that they would just need a diagnosis to make a decision, how foolish I was ) I asked for reconsideration and no one let me know the outcome so I ended up phoning dwp and they said my case was now closed and that I should re apply, I did, using the info from work and benefits step by step, with all the evidence labled etc, sent it of, two weeks later letter to sat hr mobility, no care but didn't need a medical either.As I am going through the process again ( I was awarded for 12 months so they have sent forms for renewal which is up in Jan 2012 and they want forms now) I have been looking at the photocopy of the form I filled in for the reapplication, since then I have now had a formal dx from prof Grahame, wheelchair services, physio, orthopods, orthotics have also been involved. my form will show ongoing problems that in some cases have deteriorated with evidence to back this up. But as I sit here I know it is not a done deal, and it could all be down to the dm on the day and I again could be refused.
For me reappliying was a quicker process than going to appeal because the whole thing from start to finish was four months including origional application. I didn't think I would get care even tho I can't stand at the cooker get in and out of the bath because at the same time I had to apply for sons dla and I care for him, we just live off sandwiches and microwave meals
if you get stuck on anything post it up and we will see if we can come up with something, ie a change in how you word something or that maybe you haven't included enough detail etc.
It is a very horrid and stressful thing to deal with and even now I should be dealing with the form and not be on the laptop, its a delay tactic for me as I will have to bite the bullet and get on with it.
Oh my classic statement from the dwp on first refusal when I stated that I sleep downstaires as I fall on the staires and going up caused extreme tachy and knees very unstable etc was that I could use the staires but would have to do it slowly!!! oh they know that do they, because I can't safely manage the stairs (have had several falls) and that is why i sleep down staires.Remember each time you phone them make a note of who you are talking to and the time and date also the comments made, as you might need this as evidence in your appeal.
Take care superstottie and good luck
best wishes
star gazer (how I hate those brown envelopes) xxx

[Superstottie]

Thanks Star Gazer! I didn't use the b&w website, as even though its only about £20 to join I couldn't afford it as my hubby cannot work due to looking after me and the children and we have had to move house due to my disability. (but of course there is nothing wrong with me, the council hand out house to anyone???) As I said previously I am going to try and get the help of the local benefits advisor, might ask OT tomorrow if she could ask them as she was the one who suggested them to me in the first place. I could really do without all this stress right now but I am determined not to give up, I asked for a reconsideration rather than an appeal at the moment as I know I am not ready to go to appeal right now, and I would like to see if I can get a referral to a specialist (Dr Ho) in order to get a bit more backing from someone with real knowledge of the condition. I am planning on bombarding them with so much evidence that they give in, will even send them proof that I was rehoused due to my medical need.

Our main problem at the moment is the constant worry that my hubby will be forced into a job and I won't be able to cope, there is just no provision for those who are waiting/fighting for DLA. My hubby claims JSA, and they are getting fussy about what he is doing to find work and why he isn't applying for jobs they think are suitable, they won't accept that he has to be around to take/collect kids from school and be here at bedtimes etc and to get me up in the mornings - all they say is you should claim DLA and then carers allowance! If only it was that easy!

Enough of my rant - off to see what evidence I can send in.......

[star gazer]

hello superstottie, I think as you say having the backing of a specialist will help, I noticed in the dwp disability handbook that with hms a letter from a rheumatologist outlining the particular problems of that patient is preferable as evidence although not stuck in stone as I had not had my diagnosis when I applied, however I did have letters from nhnn about the pots and spinal arthritis, this time I will be adding the rheumy letter.
If you really can't face appeal then maybe reapply if the reconsideration fails, if you can, the w&b down load guide is a real help, it takes you through the form step by step, one question at a time, I didn't realise how much I didn't understand about what they were actually asking, and how much you can repeat and overlap when answering. it seems that for every answer you need to add a because, for example "I find it difficult to get in and out of the bath because lifing my leg over the side causes extreme pain and hip subluxes due to the hms, I cannot lif my arms to wash my hair because it causes extreme pain and my shoulders sublux due to......" so for every statement you make you need to back it up with a reason medically and the fact that you need help to do this. As I said earlier Did not recieve the care element even though I use bath rails and boards and have had bad falls in the bath! along with other things involving care. although I still think it boils down to the dm who sees your form and their knowledge and understanding of all things hypermobile and autonomic.
s g x

[Superstottie]

Right - me again!! I asked for a copy of the advice they got from the healthcare professional, and after managing to decipher MOST of it, I am wondering if I might have caught them out! I was reading through the B&W guide the other day and came across the training book for the healthcare professionals giving advice to decision makers. From what I understand they SHOULD NOT advise on the entitlement, but only on medical discrepancies or terminology etc etc. My report says "my analysis of the medical evidence will exclude severe walking difficulties and thus is not virtually unable to walk, she should be able to undertake all (illegible words) tasks including the main meal preparation."

In my mind this IS advising on entitlement! Anyone else agree with me or I am being paranoid????? Also what MEDICAL EVIDENCE??? I was told that they hadn't recieved a report from my GP and only had what I sent in, which says nothing to back this statement at all. It only mentions "she hasn't had any definitive joint dislocations though she feels her left shoulder partially dislocates" But makes no mention of the subluxing which is what I have stated as my problems!!

[Superstottie]

And again!! This is the bit that gets me thinking:
Questions will not relate to entitlement criteria, e.g. “Is the claimant virtually unable to walk?” “Can the claimant cook a main meal for one?”

I do not have a full copy of the form with what was asked and it seems to be blank as it had not been signed by the DM, so thinking it may have been requested through electronic format?? Can I request this info to see if they have asked these questions??

[trekster]

Would like to send hugs and spoons to all those appealing DLA

[everhopeful]

Okay, here is my update.
10 days ago I got the decision, which was a big fat NO for everything. I rang on the day and explained why I don't agree with it and asked for copies of my claim form and the Atos Doctors report which if you remember my earlier post, he was lovely, very attentive, and agreeable (wolf in sheeps clothing more like), so I asked if someone else could look at it. The report arrived and I was totally shocked by the way it had been written. It was full of indescrepencies and lies quite frankly. He omitted some really important stuff, the most shocking being that I wore my heart rate monitor which shot up to 157+ and agreed with his stethoscope about the fact that it was too fast. He did not mention anything about how my Pots affects me at all on his form, even though this was covered at length.

Anyway, one week later, I have rung twice with my complaints and am now in the process of writing a formal complaint against the man. It's draft form is 17 pages and my friend from the CAB is going to type it for me and add his half penny worth too. I have asked to see the decision maker and the doctor, together with me and my friend at a location of their choosing so that I can " directly confront" the doctor who thinks he is more qualified than a Consultant Cardiologist, a Consultant Rheumatologist and a senior Physiotherapist!!! I doubt he'll agree, but if he does then I'll give him a very hard time.

Just got to get it typed and in the post and hopefully before the person who looks at it again makes a decision based on the Atos report alone. My husband said when he read it, it sounded like a normal person with hardly any problems. I guess the thing that makes me really angry is that it makes my claim form look like I am a liar and as I'm NOT, I'm going to fight this all the way to tribunal and even my local MP if necessary. I'm am going to fight this ALL THE WAY by wearing my heartrate monitor.......and standing up in their offices!!!!! Making sure of course that they have a telephone handy for the enevitable.....
Liz x Hugs to all who are fighting too. xxxxxxx

[Superstottie]

everhopeful - I have just finished my complaint regarding the healthcare professionals advice, have asked for it to be removed from my file before reconsideration, or to take it straight to appeal as I do not want any extra waiting or stress caused by another weighted decision! It makes you wonder if they have mixed up the details with someone else as my decision told me that I have absolutely nothing wrong with me!! It makes me so angry that they are able to get away with doing this to people, especially those like us who are already having to deal with so much stress and worry to begin with! I hope that you get the decision you want soon, I am hoping that they realise that I am not going to give in without a fight and give me an award, but I know that this isn't likely to happen!

Big hugs and spoon, I know how tiring this all is! x x x

[star gazer]

everhopeful and superstottie, thinking of you both at this stressful time, I must I admit seem to be finding any reason to delay finishing my form as i hate the wait for the brown envelope, just waiting for hubby to finish his statement then all to be photocopied and sent, lost a few days worth of form filling as felt too unwell to tackle it! I just find the whole situation that you are both in totally ridiculous but unfortunately not uncommon where a medical report does not reflect the claimant in anyway what so ever. You seem to both have a good amount of fight in you which you will need to push this situation on, stay strong and stand up for your rights, I may well be with you when I eventually hear back, but probably won't hear anything for several weeks, or of course it could be a quick turn around and a simple (or not so simple) no. It always amazes me when I look at my first refusal the reasons why and what they said I could do although never having met me, without a medical and purely based on the application. I did re apply rather than appeal and was successful in being awarded hr mobility without medical and I think that was because oT where involved by then along with the physio and adult services who had seen and assessed me and written reports to support this. I guess what I am saying is that even if you fail first time all is not lost, make sure you have as much evidence as you can and photocopy every thing you send them, also make notes and dates of any phone communication too.
take care both of you
best wishes
star gazer

[Superstottie]

Thanks Stargazer, I have the OT involved, but haven't got a report from her, think I will ask her to send one for me. I am also going to ask my phsio for a report of what she is helping me with and the results she expects to achieve as they stated that my falls were being addressed by Physio, not sure where they got that from as it wasn't in any of the info I sent in, and I would love to know how physio can cure autonomic problems!! I now have my NHS wheelchair, but even though it was custom built for me, it is still not right, as their measurements were useless, and I am going to have to take it back. Don't know if they will sort it for me or get me a new one so could do with the extra money to buy a new wheelchair so that I can get out and about!

Good luck, hopefully they will see sense and award you straight away!

Bex! x x

[Crazysheep]

Hello everyone,
Thought I'd post my latest news - I was refused my dla application, so I appealed even though I didn't really want to go through it psychologically, but I think I need the help so I appealed. That came back with the tribunaral, which I had 2 days ago, went in there, heart on my sleave, going to go in with the truth as I thought that would be enough to convince them I needed the help. Went in there they seemed "nice" then bit me hard before I even realised. I sent in my pain diary that I was making online, with my appeal, and that was my biggest mistake, they took it as gospel, even though I was using it to try and find any reason for why my pain was higher on one day to another. Didn't realise that "walking to town" 10 times in 1 month is a big amount, and town is only about a mile away if you go there and back. Plus I don't do it in one go, but they just ignored that, and said I walked alot, even though I said i use my fiance as a crutch, and while I don't have a walking stick, I should try to use one in the future. That seemed to go against me aswell, it was a slaughter in there, left me feeling amazingly worse than writing the form in the first place. Obviously having good and bad days, and bad days meant not really getting out of bed, doesn't mean anything, not being about stand unaided for more than 5 mins, not being able to cook, even their example of stew and dumplings, again seemed to get ignored. Can't bathe myself as I can't get in and out of the bath on my own.
It was just *BEEP* argh get so annoyed thinking about the whole thing. I don't think I can go through the process again, at least for a good few months, as I'm not a fraud but now i'm left feeling like one, feel like I shouldn't be having knee pains, hip pains and back pains because I'm "normal!"

Sorry just wanted to vent

[barkingmad]

sounds like you had an awful experience crazysheep.

Its a shame they used it against you. The rate for success at tribunal is around the 75% mark now, so please dont all give in it can be worth forcing it to tribunal!