I work full time and I am struggling, has anyone been awarded disabilty with SLE?

[Paula1968]

[momo_special]

I've been put off applying as I'm not 'ill' enough plus I've been told that the paperwork is huge and with difficulty do they award disability allowances... good luck and I think you'll need back up from your lupus nurse or rheum.

[smurfett]

i asked my consultant last time i saw her if i could get disability allowance and she said no, just because i have an illness it doesnt mean you disability - not very helpful

[Hidden]

Not ill enough and a consulltant saying because your ill does not mean you have a disabilitity. This really gets me angry when it come from a person who has probaly missed your illnes fristime around. They get paid load of money, They do not know how hard it can be to get by when you have a chronic illness draging you down, bills stll have to be paid,foos has to be brought I get benefits and have form day 1 and have passed all the test the Goverments have thrown at me. Why because I am ill and cannot hold down a job.

As you have will have blown it with your Dr . Make an appointment to see a a trained advisor. I must impress on you a trained advisor at the CAB. Be up front with them, Thell tem how hard it is to live with this wriched illness , tell them Lupus it is for life. how it affects your day., Get them to fill out the forms. Tell them all your symptoms, the fatigue how it affects you life and will and all the other symptoms. Do not give up. You faught for a diagnosis now fight for your rights. you have paid your NI.If your Dr does not like it too bad, its your life, you can alway find another Doctor. I had change doctors recently when we did not agree.

Good luck and let me know how you get on, if you need too talk I am always here.

Ken

[Blancanieves in reply to Hidden]

I agree with Ken. I used to be a CAB advisor until Lupus meant that I couldn't remember the details of my training. Go to your CAB. They are trained to fill in the forms and will get u the best you can achieve.

[irenestephen]

I was diagnosed with SLE eleven years ago and tried to keep working as long as I could (as a teaching assistant with learning support pupils) but had to retire through ill health 2 years later. After being assessed by 2 seperate doctors I had no problem getting DLA and Incapacity benifit as they said it was a progressive/degenerative illness. I have cerebral lupus which affects my short term memory and balance so maybe it depends on how the illness is affecting you.

[sandra4]

I was on incapacity benefit for 11 yrs, but then was assessed by an independent Dr & had everything took away from me, even though I had letters saying I was entitled to DVLA for life. One of the reasons was because I had a strong handshake !!! I am now at work full time as an inclusion assistant, yea I struggle at times, but have a very understanding boss, I will never go back to benefits as the system really let me down, I would rather struggle than be dependent on them.

[franklin853]

I am on disability allowance but only get the low rate. i work full time and find it such a struggle. im 22 and and hoping 2 reduce my hours by next year. I think the CAB is a good option i have contacted them a few times and havent had alot of luck with them but if u keep pushing them im sure ull get somewhere. As my SLE is getting worse i will apply for a higher rate as am off sick alot & dont get paid sick pay. My next step is to try and get carers allowance for my partner but not sure if im entitled to it. good luck

[Paula1968]

Well I will let you all know how I get on. Not holding my breath!

[teecayc]

I also struggle with the hours I work, at the most around 16 but I am also off sick for sometimes months with very bad fevers and other symptoms from Lupus Panniculitis. The closest I've got to any kind of help is the ESA benefit which I am in the process of re-applying for now as I'm off sick again and am not entitled to SSP. They made so many cock-ups before though, nobody seemed to know what they were on about. They stopped my payment once for no reason and then over paid me which I obviously paid back. I passed the Medical I had to go to and was deemed fit because I could lift my arms above my head etc!! This was with all the reports from my doctor and consultant. I find this ridiculous! I appealed against the decision. Months later, phone call after phone call, I found out that the appeal had been dropped for some particular reason but nobody had bothered to let me know and all I kept getting was different answers from people.

Unfortunately I missed the time limit to claim Return to Work credit (because permitted work ESA only lasts a year) Partially my own fault as I got my dates mixed up but nobody let me know.. and after a million phone calls trying to find out what was going on, I finally got the paperwork through to claim it - weeks after they originally said they would!

I'm not looking forward to going through all that again! I really hope you have better luck than I have if this is the route you have to go down! Good Luck x

[LupieMoggy]

I have had SLE for 6 years and am 24. I am able to work 8 hours a week spread out and that is with help within work, I also get family help at home for house chores, washing, cooking etc etc. I also use a wheelchair part time due to fatigue and lupus arthritis.

I applied for DLA 4 years ago when I realised I wasn't gettign better and was awarded low care and high mobility and when i reapplied i was awarded middle care and high mobility. I filled out the form honestly and didn't get any help filling it out.

I think with all applications it doesn't matter what your illness is but it is how it affectrs your daily life - some people are lucky and their lupus is well controlled and can live a normal life but others are affected more severly day to day.

it can be awarded though. Hope this helps.

[KateLawson]

Write to your Minister for Health, your MP etc - it really can make a difference!!

[Hidden]

i get DLA have been turned down in the past but realised i like to see myself as better than i foten am. my gp wrote a report for them. and citizens advice fill out my form for me as its less stressful that way. good luck.

[AngelaW]

Hi, I get high rate DLA and I really do rely on my car, I don't know where I would be if I had to rely on standing and waiting for a bus then walking to where I need to get to when I got off it!!! That said my old GP recommended I got it and wrote to the DLA office when they turned me down. Not so sure my new GP would do the same. If you go on to NRAS website they have a booklet to download explaining all about DLA, what they are looking for, and why you should not be discouraged from applying for it. I used this booklet with my claim. Good luck and dont be put off - if you get refused then appeal.

[Lisa78]

Yes you should be able to but with disability living allowance its about what u can do rather than cant if u know what i mean.I have sle and i get disability

[loriodeh]

yes ive had high for mobility and low for care for last couple years as my sle got worse lgave up work. lve returned to work partime as l got a job offer from a understanding employer who lets me work flexi hour around how my flares are fatigue, pain etc. but dla have sent me for another medical even though my condition is worse than when l was awarded it. the reason l was able to go back to work was because they gave me this help in the first place........the car helps me be mobile l cant walk for long the care part helps pay for home help couple hours a month giving me that put less presure on my body.......meaning l could try to get back into work for my sanity. well still waiting on out come of resent medical just hope they dont take my lifeline away after im doing my best to contrbute to work force which is a day to day struggle. we didnt choose this but goverment make it even worse for us with the lack off understanding lupus.

[sazzyb in reply to loriodeh]

Sadly it's not just this Government loriodeh, it's successive ones. Atos Healthcare was awarded the DWP contract in 1998 when Labour was in power, and has been with us ever since. My husband is disabled and bed-bound, it took me 2 years to win his benefits. When he was assessed in our home by their chosen doctor (one of our local GPs I might add..!) the GP wrote a pack of lies in his assessment report. He wrote that my husband had no trouble getting off his bed and walked unaided to the bathroom. Well my husband never got off his bed at all during the interview!! The lies incensed me at the time - hell hath no fury like a woman scorned and I managed to win the appeal. I've purposely followed Atos ever since, nothing changes! It also depends on where you live. I know people who have got their DLA farely easily, others have had really stressful times trying.

[NatashaW]

Hi I too get DLA, high rate mobility + this year was awarded low rate care aswell. It took two long years of fighting and appealing despite my medical records being sent, but I wasn't going to give up. SLE is a really debilitating illness and if you feel you should be awarded DLA keep fighting. Good luck. x

[jothemoose]

I get both High rate care and mobility. Without them life would be intolerable. All I can say is make sure you tell them EVERYTHING little thing, no matter how trivial it may seem. For instance, can you open a carton of milk to pour in your tea! Good luck x

[joanna39701]

yes i have been awarded my disabilty with sle and my diabetes high blood and sleeping disorder i didnt know that lupus can do u so bad oh my god been with us all