Im going round in circles with this DLA i applied last year june 28th 2012 and had several complications with lupus. I have Lupus, APS, Rhuematoid Arthritis, struggle with the pain of lupus and the side effects of the APS. I have appealed for my descision to go to court and yet they still couldnt make a descision based on the fact they had evidence too. So i had to have it go again to the courts with some extra, up to date evidence am yet to get a reply but am wondering if im just wasting my time i have alot of complications and im far from the normal young girl i used to be without SLE. I have a feeling im just going to have a further disapointment, not a day doesnt go by when im in some kind of pain. I just would like some advice on how long it took for you to get it, if you bothered with applying for it, any advice on what i should do to make sure i could get it. thank you so much for reading.
DLA: Im going round in circles with this DLA i... - LUPUS UK
DLA
Hi there, I'm one of the lucky one's who was awarded DLA (mobility element) on the 2nd application, I didn't appeal after being turned down on the 1st occasion though.
I left it a year and then re-applied. I dont have any advice I'm afraid as I dont have direct experience of this, but can only imagine that the transition from DLA to PIP means that less people overall will be awarded benefits as this government aims to cut spending so drastically, and sadly in my opinion it is always the deserving and needy who are affected!!!
Sorry for ranting, but I wish you all the luck in the world with this and hope you can get support/advice/guidance from CAB or similar.
Regards,
Slowmo
Hi im one of the unlucky ones! I applied in march 2011 got refused in the summer of that year, went to tribunal about 10 months later got adjourned for further evidence, another tribunal finally in October 2012 got refused for both care and mobility on both levels!! I've psoriac arthritis, lupus, sjogrens, ray aids along with lots of complications.
Daily I take meloxican, leflunomide, asprin, indiapide, simvastin, co codamol, tramadol, rampril, + glandosane spray for my mouth, lacrilube for my eyes.
I need frequent brain scans as have inflammation on my brain, caused my tia's (mini strokes) ive weakness down my left side with foot drop, nerve damage on my right side, memory loss, constant pain needing cortisteroid injections. I've been admitted to hospital for the inflammation around my heart muscles
I need 2 sticks if im walking outside and even then can't walk that far. My bungalow has been adapted after assesment by the council, I have grab rails fitted throughout and bathroom have been turned into a wet room. The council have registered me disabled, I have a blue badge for parking, disabled bus pass.
The tribunal judges had evidence of all ive been through, brain scans, specialist reports etc, house adaptions etc and still I wad turned down on every level!!
At tribunal they had even brought a gentleman 150 mile from Cardiff DSS to act as prosecution side against me but he could see with his own eyes what ive been through and what life is like for me and see my disabilities with his own eyes so he CHOSE not to ask me any questions as he said he had seen enough evidence. The tribunal judges still said no to my claim!!
On speaking with the DSS gentleman outside of the tribunal, he was telling me often the ones who he could see were genuine often aren't successful and often ones 'known' to the DSS, who in his eyes were nowhere near as bad got it at highest rates!
I think its definitely the luck of the day when U go there as to whether U receive it, keep your chin up and very good luck x x
Thats absolute Fricking mad but it is, i say you are much worse than me the fact you need to 2 sticks you have adapted your home have frequent brain scans and the council have registered you disabled is utterly rubbish i cant beleive it you are registered diabled and still have had no joy. Well if you cant get it i know i wont, thier are people out thier faking thier disablity for god knows how they do it and get accepted for it long time ago and still get it,
I am so sorry you have been through all of this! I am gobsmacked that you haven't received this! I have no understanding at all! I have to say, I applied in Nov and last month got the high amount for both care and mobility! I was over the moon! I was totally prepared to appeal as didn't think I would get it for one moment! I did do a post about it, and all I can say is I was very clear about my answers! I did not say on a good day I can...... cos the reality is even if you get a good day! you will have payback for it! So is any day a good day! I listened to all the advice that I could, I read loads of stuff and was an emotional and physical wreck over the 5 weeks it took me to fill in the forms! I think sometimes we dont even realise how bad things are as the pains etc become normal! So admitting all that stuff is hard to do! I just want to add, that I have worked all my life (until almost 4 years ago) this was the first time I had claimed DLA. I have wrote all this to let you know that sometimes it can happen without having to appeal etc and I seriously hope that you will eventually get awarded what you deserve, Good luck and best wishes x
Agree with this, I was informed by a member of a local advice service that if your good days equate to bank holidays rather than annual leave its best not to mention the good days at all..
In my opinion, it is not so much what is wrong with you but how the disabilities and illnesses affect you on day to day living.
I have Lupus had it for over 30 years, I have had a lot of organ involvement as well as the joint and muscle pain the fatigue and all the other crap that goes with. I am now being investigated for lung involvement and will get the results end of May. I am on a lot of meds also.
I renewed my DLA claim in January and got both mobility and care indefinitely. But that doesn't mean a thing as DLA is moving over to PIP so will have to reapply all over again.
The point is you have to show these people the whole picture of what you cant do, not what you can do. Never say you have good days but better days. I took a typical day and told them the problems I had hour to hour for 24 hours. I think this way they can understand much better and see how you have to live day to day.
Of course also get support from GPs and Consultants and bombard them with proof and information. Never leave out the info that may seem small to you but could clinch the deal for you.
Hope this has put you in the right frame mind to reapply. x
I too first applied DLA 6 years ago got turned down appealed and then got it. Had the dreaded form again and expected the same, however this time I was prepared. I sent every letter (copied) that I had received from hospital/docs a complete guide in brief to what lupus was and all my other wonderful ailments with notes from NHS guidelines as well. Stating this was a debilatating disease... A whole lot of other research enclosed. I got a my hubby (me/us) to write a letter to say what is was like for him to care for me and what it was like from his point of view, pointing out what he does on a daily basis for me, cooking, cleaning etc.. Only stated my bad days never a good day. I recommended that my GP was to be contacted not my consultants (as they dont have the time to fill the blank boxes in and see so many of us, as this is what stopped the claim last time, because he didn't write in the boxes he only ticked them) so I spoke to my GP and said to him that DLA will be writing to him about this and guided him about this and he was fantastic. And anything else I could think of that would bore them, but factual. From this I got a indefinate, which at the time was fab, but now we have PIP to look forward too WOOW... Here we go again... Theres a song about that Im sure.. lol
Hope this helps, but DONT give up, and keep smiling. xx
You have to take care not to fall into the trap that so many want to apply to Lupus sufferers. If your neighbour is ill, you will only see her on her good days.
I am not saying that you are wrong. Just that its all too easy to assume without the necessary evidence.
My back was out last week. In fact I couldnt stand unaided for 6 days. The day after I did it, it took me 45 minutes to be able to get up from bed. True. I couldnt even turn myself over. But I have done it before, and knew what I had to do to deal with it. So I didnt even alert my GP. As far as she is now concerned it didnt happen as she has no knowledge of it.
I dont claim DLA myself, but feel that there are times when I really should have it.
apologies for my previous remark,didnt mean to cause it to sound like im a sh*t stirrer. ive deleted my comment 
Huh? What did you say. I didnt read it, but if you have something to say that isnt nice or didnt seem nice then you shouldnt post it everyones here to post suggestions to give advice or to answer questions we are all in the same boat with lupus so whatever you said take your nasty remarks elsewhere.
dear metoyou,
I wrote that the dla system was unfair on how it treats us loopies as we have a complex condition that's hard to explain and its not always a visiable illness to others, I said I have a neighbour that has full dla and has told me that she isn't as bad as what she said she was to the dla assessors, I said it was unfair that she got it so easily.
I NEVER ment any ill feeling or upset anyone sincerely apologise to you and overnighthearingloss.
I have never made nasty remarks to anyone on here
Losing my job!
How do you confirm a diagnosis 
DLA
Persistent throat problems 
