has anyone with lupus ever been refused DLA-i am getting concerned with all the changes that have happened

8 Replies

  • It took me four years to successfully receive DLA. I had my local MP write letters for me, my local councillor and obviously all Medical Experts involved in my care. I too am really worried about the current changes with benefits. I am hoping that if we are already receiving it our claims will continue and that it will only be new applicants that go through the new vetting process. Unfortunately Lupus is a disease that ebbs and flows so when completing these particular forms always make sure you fill them in as if it was your worst day, they have to be aware of how severe Lupus can affect your daily life. If you have any other replies with more knowledge regarding these changes in the system, I would be interested to know too. Take care

  • regardless of how long ago and for how long we are awarded-my understanding is that come2013-14 we are all to be reassessed. i was awared it for life but will be no exception to the new rule

  • Thanks for that. The Government are changing so much at the moment you never know what's going to happen next! My DLA is due for reassessment in 2014 anyway so I'm hoping I still get it. I take over 50 tablets a day and have just had a Lupus related heart attack so am on rest too. I really don't understand how they think people can go back to work when they're almost immobile, need to sleep in the afternoon and constantly in pain! They obviously don't know anybody with Lupus!

  • I get low rate DLA and i have read that they are doing away with the lower rate when they bring in PIP. This is really worrying. I was refused middle rate when i reapplied because my condition had changed. They actually ignored everything i said on my form.

  • I was refused DLA on renewal last year and am now going through the appeal process which is long and drawn out.

    The ATOS doctor who came (I had a home visit) and the decision makers reports were nothing like me and totally wrong in fact I thought they were reporting on someone else!

    Neither seemed to understand Lupus or its related conditions.

  • I was on DLA then they sent me for assessment and they sent me to the job center they havee struggled and i was signed of sick and i am appealing the decision. I would love to work if when im fit i work and when im not i get support but that dosnt seem to be realist. So i think we will all have to go on this merrygoround until they have got as many people they can off there lists as they can and maybe we can get on with fighting this illness without the pressures of money worries. Keep trying the more we explain how it affects us the more they might realise that its complicated.

    Good luck keep trying

  • The last I heard was that the Gov were hoping to cut the numbers claiming DLA (the new PIP) by over 500,000, so I think we'd best brace ourselves!

  • i have just received the forms for my new claim, i have an appointment with the disabilty north team to complete them for me.... im really starting to worry, im on lower care and higher mobillity, i go to uni 8 hrs a week and would not be able to attend without my car or a parking space, but what they see is a woman in her 40s who looks ok... im going to get them to come to the house this time if they want to interview me as it was so stressful attending the centre and i had to sit for an hour while they ran late x

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