has anyone had to give up work due to there sle, ... - LUPUS UK

LUPUS UK

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has anyone had to give up work due to there sle, and been granted DLA.

mojo profile image
mojo
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mojo profile image
mojo
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18 Replies
irenestephen profile image
irenestephen

Yes I have had to give up work due to my sle and yes I get DLA. My application was very straight forward and I had no trouble in receiving it. I have cerebral lupus (among other things) so wether I got it without any trouble because of the way my sle affects me I am not sure but I do know of 2 other people who have DLA and one is working part-time.

mojo profile image
mojo in reply to irenestephen

thank you for replying, its just that i have been declined 2, and iam now in the process of a tribuneral, its just frustraighting at times if i could work i would be out there i just cant , but al keep trying thanx again....

Lupoid profile image
Lupoid

I work full-time and get lower rate care. Without my wife or the canteen at work I probably wouldn't eat... I'm surprised they didn't give me mobility though because that's the one that I feel I need more. I have my bus pass though so I guess that counts for something.

Lucy86 profile image
Lucy86

Hi, I have not given up work but I have had to reduce my working hours by alot and I no longer do nightshifts and I am loosing alot of money. I am still trying to find out if I am entitled to any benefits but it is very interesting to know if other people are or not

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi mojo,

There was another thread about this same issue not so long ago. Here's the link to if you want to give it a read for any tips.

lupusuk.healthunlocked.com/...

bettie profile image
bettie

Hi mojo

I have sle also copd and diabetes i have been awarded DLA this year, I was given the lower carers allowance and higher mobility. I think the higher mobiltiy was given more to do with my copd, I can't walk very far because I get out of breath, some days making the bed leaves me breathless have to use my inhalers. The sle did go for my lungs which makes things worse.The DLA sent a GP to my home when I first made a claim, he was very nice and asked me lots of questions and did the normal checks blood pressure etc, then after a few months they awared me the lower carers allowance, I was surprised I did not get mobility so I appeal and they let me have the mobility. I still work but I only do 12 hrs a week. Good luck

tiredmum profile image
tiredmum

Hi there,

I used to work full time, be a single parent and run a cub scout group. After episodes of being off work for weeks at a time I finally had to give up.

As I still didn't have a diagnosis I continued to get more and more flare ups that lasted weeks or even months over the next 10 years, to the extent where I was even unable to get to the toilet or get dressed without someone helping me. I eventually qualified for DLA but have to be reassessed every couple of years.

As my diagnosis took so long and my health was still deteriorating I even qualified to have a carer come and help me for 18 hours a week. At the moment I receive high rate mobility and middle rate care.

I was only diagnosed with SLE, Hughes Syndrome, Raynauds and Sjogrens last year so I am hoping that given time my health will improve enough for me to no longer need a carer.

The DLA money was helpful but I would much rather have my health back.

The one bit of advise I can give is take your time with the application form. It is very long and in depth. But if you think about it you can give an answer to virtually every question as no day is the same. Look at how you are over a couple of weeks and add to the form each day, then the assessor can get a true picture of how your health affects your life.

I think everybody has different symptoms and levels of severity with their Lupus and that is why it is hard to get DLA. I think the assessors also expect you to improve once on medication for SLE but as we all know, it doesn't work like that.

Keep positive and take each day as it comes

Nic

franklin853 profile image
franklin853

I work full time and get the lower rate of DLA, i find it really hard and am often off sick due to my SLE. I am trying to re-apply for my DLA as feel that my Lupus is getting worse & am hoping to get more benefits. I am interested in how people can cope without working?

mojo profile image
mojo

Hi there i havnt worked for the last 3 years and have been refused 3 times for DLA, iam waiting on tribuneral date coming through, i have found it realy hard to adjust to not working but there is no way that i can with this illness, all that i can do is just except things the way they are i have a lot of support from my family n friends there isnt a day that i dont have pain most days are severe.

things like this site and meditation helps me too, hope this helps a bit

Trace profile image
Trace in reply to mojo

Hi mojo, I gave up work 20 months ago, I get EAS & the lowest rate of DLA, I had to go to a tribunal, which was scary but it worked & In was granted it, I have applied again for a higher level & had a DLA Dr come to see me the other day, she could see how ill I am & said she was gonna support my claim. Please go to the tribunal - we really shouildn't have to fight so hard cos we don't have much energy - but their hoping people give up so they don't have to pay it, keep fighting mojo, I wish you well x

vonni profile image
vonni

Hi,yeah I had to give up work and get full DLA and ESA, Got declined the DLA first time but it was down to the way I answered the questions cos I hadnt accepted the Disabled tag(and I still cant ) so I got my Esa oofice to fill it in and got awarded it straight away, keep going and if you can get someone else to fill it in for you,xx

in reply to vonni

Wow,,thanks for posting this,,you just answered a question for me,,it just hit me what i did wrong,and was declined dla,,i must appeal now.

mojo profile image
mojo

thanx vonni, thats wot i did this time so ned to see how tribuneral goes then take it from there...xx

vonni profile image
vonni

Good Luck,just filled my renewal in,gulp xx

NickyQ profile image
NickyQ

Good question and I've often wondered if i should apply for this. I have SLE and like most of us i have good days and bad days. I don't work anymore. A part of me would love to but i don't know what employer would put up with "I'm not coming in today because i'm tired and I ache!" etc Unless yu have suffered from it you really can not describe it can you. Does anyone know if you can claim for DLA and do a part job without it being affected?

Alliedee profile image
Alliedee

i had to fight for my dla but finally got it july this yr,

anne59 profile image
anne59

For guidance check out the website benefitsandwork.co.uk, they have lots of tips and up to date info on benefits. You don't necessarily have to subcribe to get useful information.

in reply to anne59

Wow this is great!

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