i won my dla appeal and tribuanal 2 years ago , low care ,however i felt it was a good start they actual y accepted i need help and yes you have guessed it i am up for renewal in feb 2013 so i recieved my forms and the gp care advisor came to my home and completed them with me that was 29th oct and yes uve guessed it i got them back to day i have been awarded LOW CARE for a year, now i dont wish to seem ungrateful but how do they deem this when our disease is sooo complexed like many of you i have SCLE with a crossover of SLE and the "norm" raynaulds/syjorns/copd/ibs/fatigue/insomnia/cluster headaches to name but a few, so lupie people please can you help ???

Do i ask for them to look at my claim again (and they say i may loose low care if they change there minds) or do i just except and plod along, but it just seems sooo wrong , i have worked full time for 28 years ,11 of them i went undiagnoised my work collegues used 2 joke and call me sick note as i WAS ALWAY s ILL , i just feel like we are pienilized for"having CAUGHT " lupus as people seems to think thats how it appears, i dont know if ive any fight in me or whether my brain is up to any paper work , i have a 15 son with aspergus and have been a lone parent since he was 5 months old , to be honest i take then 0ne hundred and odd tablets a week so i can be around for him being a teenager is hard enough without having aspergus and a mum with lupus, but i say a laugh a day keeps lupus at bay and we do laughwhich is good as it takes my mind off the pain for 5 mins , sorry getting back to the question do i phone the dwp or do i ask the advice of the assessment technician that is comingon monday from social care ????? please help :)

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  • When I do my form I make sure I include absolutely EVERYTHING, headaches, hoe the RA & MCT in my wrists can cause me 2 drop the kettle etc things like that, u've basically got 2 base everything on when u have a really bad day. Personally, I'd re-do the form or ring them & tell them u need 2 add bits 2 it that u had forgotten 2 add (memory problems lupus causes can make u 2 that!). No matter how significant things seem 2 u (& let's be honest, most of us learn 2 live with certain things & accept that they r just a way of life 4 us) PUT THEM ON THE FORM! Good luck :0)

  • sher78 thank you i will ring them tomoz and tell them i need 2 add bits2 it that i had forgotton thank u x

  • you need to go to a specialist dla adviser. a good cab worker or welfare rights officer is your best bet. i got low care and trust me on this i had to beg for it. i had a good cab worker but i think my failing was to do the initila form myssel. if i had the cab worker do it for me i would have saved myself a lot of time and anxiety.

    i have heart problems and prblems walking. lots of fatigue and the pain killers i am on now make me very sleepy so i can barely do anything. get some quality help now. they dont care about whats wrong with you but how if affects you lifday to day.

    i have a friend who had cancer. who has been clear for years. works in a pysical job and gets the full rate of mobility and care.

    i just think lupus is not that fahionable and sometimes i think we get penalised for getting this condition. its a bit of politics.

    i despair when i read that people need/want a diagnosis for lupus as it means nothing to most health proffessionals...sorry for that rant but its how i feel

  • Hello u have just had mine back and I also have low care but i think im one of the lycky ines as i now also get high rate mobility because of the raynaurds and osteoarthritisi put down how I feel on really bad days and never gave exact times or measurements as I explained it differs day to day if your not happy appeal and include as much info as you possibly can I put in all hospital appointments letter of my rheumy, OT, my GP a letter from Lupus UK who are happy to send letter letters off people who help you. I think if I hadn't I most probably wouldn't have got anything but do appeal if your not happy

  • Citizens Advice have disability advisers who will fill in the forms for you. I suggest you ask them for help as they are used to filling in the forms. They will even come to your house if you have mobility problems. I submitted a support letter from my GP and Lupus UK. Think through your worst days and the type of things you may have difficulties with and keep a list that you can mention. It is so easy to forget things as we learn to cope in different ways. I was awarded middle care rate by following this. Appeal, don't give up. Good Luck.

  • I get low rate care for SLE. When i developed SCLE, i put in for middle rate care and mobility as i cannot walk very far. They do not recognise skin diseases and ignored any references i made about SCLE in my form. However your lupus is not going to go away, so i don' t know why you've only got it for a year. Like others have said, CAB are very helpful and will advise you of the best way to proceed.

  • thank you all i felt really alone butthanksto you guys i dont, i didnt want to feel greedy thats all , i really appricate eveybody opinons and advice and i will ring them myself tomorrow and ask then to re look at my claim as i would like to submit more information x

  • dla is srange. i appealed a decision made earlier this year and even though i have deterioated they said for the purposes of the appeal i can only talk about what happened to me when the desision was made. was not allowed to discuss my new symptoms.

    thanks ebril for your input and its good that you got the right decision

  • Kitty it's been pretty normal for them to only award one or two years' DLA to begin with and I'm betting you only got one year this time because DLA is ending and being replaced with a new benefit called Personal Independence Payment ("PIP") next year. We'll all have to reapply (for PIP). I already feel like throwing myself off the pier, lol :(

  • Defiantly ask to be re-assessed. I was refused DLA and asked for it to be reviewed. I was then granted the high rate although I have additional problems not just the LUPUS. Stand your ground , it may be worth it. Good luck.

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