re benefits/work/Lupus

Hi :0), any advice on how I can go about things...

was dx'd with Lupus late last yr, was really struggling working...since moved in Jan '12 & still job searching! but finding it hard, as my skin's photosensitive (hence hard to find a suitable retail job!) & the Lupus symptoms vary from day to day...I even get tired at home, job searching/housework etc. I want to work, but I know that sometimes I wouldn't be fit to work... not claimed any benefits (but am having to re-consider that option now as no £ for weeks now) & can't see how I'd be able to claim any disability etc?

- as most folk presume I'm totally well by looking at me, so how can I possibly be maybe considered for any benefits?

& if I got Jobseekers benefit, would they help me to get a job in the right environment for me?

-as most would make me more ill!

Help please....

8 Replies

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  • hi smiler i know benefit system is really hard but why dont you go have a chat to a your gp and b citizens advice, i have nit working but have had no choice. couldnt do it ant longer and i look well with the help of citizens advice and my gp i get esa and DLA makes such a difference has really helped my health no working. best of luck

  • Thank you for info Tatty :)

    Once i get another GP, i'll have a chat. Can't get to a CAB, as not working = no £ = no travel etc, but I'll see if I can get help off CAB on-line.. also can't get to a job centre, as too far to walk! so I'll look into if I can get help on-line..

    Glad your situation has improved & also your health :0).

    Thank you :)

  • Hi you are likely to need supportive Drs/ consultant etc but Lupus is a disability & if it affects wether you are capable of working then you should be entitled to ESA.

    ESA form/Drs etc assessing you should take into account wether you can perform the "tasks" /things on the form repeatedly and without pain or fatigue. CAB advise would be really usefull to help you fill in form to give you best chance of getting money that you are entitled to, as most people with Lupus what you can & can not do varies

    I'm not well enough to work/ had to give up my career & be "retired due to ill-health" due to my SLE. I get ESA (adjusted money as I also have an "ill-health occupational pension"). I'm currently in appeal to get in the "support group" of ESA as allthough they give me ESA money I'm expected to do "work related activity" aimed at getting me back to work, and the how long you can get this type of ESA for is limited (I think to 2 years max after which you are expected to be back into employment)

    When I was first diagnosed with SLE I applied for DLA but was turned down for DLA as I'm considered mobile enough & do not have big "care" needs I think DLA system is about to be changed to a different scheme but as far as I know it is only for the very severley disabled

    These are some useful initiall links to social security money that you may be entitled too:-

    direct.gov.uk/en/MoneyTaxAn...

    For more details about how ESA is assessed:-

    direct.gov.uk/prod_consum_d...

  • hi smiler sorry your between a rock and a hard place, it was like that before it became apparent i couldnt work anylonger. remeber what ever you do with the forms say how things are on a bad day. aslo they often dont give out things first time so its aways worth appealing tatty

  • well i found there is not a lot of help out there for us, ive been on labours work programme where an advisor told me i was idle and there was nothing wrong with me when i got doctors letters she was sacked. ive had lupus for 19 yrs, and like you i get my good days and my bad, and found it hard to get a job because employers just dont want to know, and the dwp sanctioned my money for 6 wks as they said there were jobs i could have applied for, and no i could not apply for them as they were not suitable. so i was pushed into taking a 4 month contract in a warehouse and its left me with more problems than when i started i now have carpal tunnel syndrome, rsi, heel spur syndrome, arthritis in my knee and possible my feet. the dwp have set me an appointment to change my option from retail, what im supposed to look for god knows, im also with pertemps on the tory work programme and there as good as a chocolate bucket.

    i am on dla given it indefinately in 2003, but i dread the new tests coming in as i may lose that, but has i havent had a review since then it could get increased if my mobility stays the same.

    i just find the job advisors see a job you can travel to they dont give a damn about health issues, and a month ago i was told i need to find an understanding boss. my last boss was a non profit organisation raising money for disabled children, i was a product handler, i was fine working for them voluntary for 14 months, but when it came to pay me i got told i wasnt fast enough, cause im not going to be as fast as an able bodied person, if there not prepared to give the disabled a chance who are?

  • I receive both SDA and DLA. My then GP helped me fill out the form as co-incidentally I got the form on a day when I had to call him out. I also rang the helpline in Blackpool over a query I had, it was on the helpline that I was told I was probably eligible for both benefits and to answer the questions as if I was suffering my worst day.

  • thank you VERY much for all your comments, still in same same but different situation as per my question, just more complication now! Will keep referring back to all your advice, so thank you again :0)

  • You can claim DLA , there is a web site called benefitandworks.com. When you fill the form explain how the illness and sympton effect your life day to day not so much the illness ie lupus. Example say a person has arthritis a sympton must lupus patient suffer from. Explain it effect supporting joints, therefore making it difficult to get in and out of beds chair baths. Putting clothes on and therefore would effect motability and require care. The form takes time. Another example say you suffer fatigue explain the daily impack not enough energy carrying out daily routine such as cooking bathing, and motability. Now combine arthritis and fatigue along side all your other sympton. Remember its not just illness its how it effects your daily life. Hope this help and good luck.

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