Share your experiences of claiming benefits for o... - LUPUS UK


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Share your experiences of claiming benefits for our blog

Paul_Howard profile image
11 Replies

Happy New Year!

To start off our blog this year, we would like some people to share their experiences of claiming benefits with lupus.

As a member of this HealthUnlocked Community you'll no doubt be aware of some of the difficulties people with lupus can have when applying for welfare benefits due to the fluctuating nature of the condition and the lack of awareness of assessors.

If you have applied for welfare benefits and would like to share your experiences with us, please email

Whether you were successful right away, had to appeal against a decision or if you weren't successful, we would like to hear your story.

We'll aim to share one or two stories a month (depending on how many we receive).

11 Replies
Wernfachy profile image

Really interested in this post as I am struggling and possibly need to look at benefits

Paul_Howard profile image
Paul_HowardPartner in reply to Wernfachy

Hi Wernfachy,

I'm sorry to hear that you are struggling. If you are a member of LUPUS UK then we have some guides to claiming benefits which I could send you. You can find out more here -

It may also be worth making an appointment at your local Citizen's Advice Bureau to see what help they can offer.

abby1649 profile image

I live in Alberta, Canada. After a year of back and forth my Canada Pension Plan has just approved disability benefits for me. Not sure of the amount yet but my employer long term disability has been looking after me so we have not experienced any financial hardships.

thegaul profile image

I replied to this post but can't see it now :/

tennissenior profile image

I have had SLE now for 3 years. I have many other related diseases as well. I take Coumadin because I have the anitocagulant factor and had DVTs twice. I do not take steroids for my Lupus symptoms. I did try it once (dexamethosone) and it did boost my labs but only temporary. The stomach pain was pretty bad and I take nothing now other than Tramadol once in a while. The most important factor in my life is my hematologist. He monitors me very closely and he is away of all of my abnormal readings. My numbers are considered "stable" for me, considering that I have ITP, Raynaud's, and many other issues. My white blood counts are always low - around the 2's. My hemoglobin stays between 11 and 11.8. Once it dropped to 10.9. I try and eat well, although with Coumadin, I had to eliminate a lot of foods that I love. My weight is low but stable. I'm a classic case of "You Don't Look Sick." I play tennis 4 days a week and swim as often as I can. Living in Florida makes it possible. The most important person in my life - aside from my spouse - is my doctor!!!!!!!!! I feel this way: I WILL SURVIVE! By the way - I bought the hand warmers and they do truly work! For 50 cents a pack - it's well worth it! They stay hot for 7 hours. As long as I hold them in my hands, I can deal with the Raynaud's.

ebril profile image

I've just gone through the PiP assesment for my illnesses which include SLE, raynaurds, Osteoathritus, Mennierres, chronic migraines, chronic pain, Sjorgens, etc etc. I heard all the horror stories of assessors and the medical assesments so was pretty scared, luckily someone pointed me in the direction of "fightback4justice" on Facebook (sorry if this isn't allowed) and my daughter filled in my firms using their guidelines. Had my assesment, lovely assessor, knew everything about Lupus which made it easier. Was awarded high on both.

I think I'm one of the lucky ones as a lot of people have to keep fighting and assessors and not very nice or they lie about the person claiming pip.

I did have some good advice which was

Make sure you have everything to hand

Make a list of questions

Have someone with you

Do a diary for the week and send a copy

Never have pets around (if you have pets they think you can do more than you say)

Get printouts of your illnesses (in case they have no idea)

kezzie profile image

I am now entitled to higher rate DLA my biggest problem is going into the support group of ESA, I am still attending workgroups about every 3 weeks awaiting tohear back from my 3rd appeal (last 2 apparently were too late) the 3rd appeal was actually filled in by disability adviser inthe job centre. Still waiting!!! They've definitely got plenty of medical evidence.

puneet123 profile image

You should not need to go to support groups unless you are able to.

Jeffscott69 profile image

Hi,I'm going for pip assessment tomorrow,work full time with lupus,off work a lot now,through bad days,keep getting constant sinus infections,had 4 ops for this,consultant said it my immune system!,ops not working,feel if I was awarded something from pip,I could drop a day,I would honestly sleep full day to keep my energy up,do lupus patients get pip?

Paul_Howard profile image
Paul_HowardPartner in reply to Jeffscott69

How did the assessment go?

Many people with lupus are successful in claiming PIP, but it does really depend on how they are affected by the condition.

Jeffscott69 profile image

Hi paul,assessment fine,I explained,how I was,very sore,re tired,lost lot of time off work,basically working,coming home going to bed,so exhausted,I explained the reason I apply for pip is to be able to reduce hours at work to rest,therefore could sustain at work better as am only 46,don't want to stop working,but can't afford to drop hours,because of circumstances,she said it not up to her,report goes to dwp,they decide,but she asked things like if I could peel a potatoe,wash myself,of course a can,if I was that bad a couldn't work at all,when I'm re tired,told her I honestly can't be bothered eating,I see ent surgeon thurs,sinus all infected again,don't know what they do,I got gabapaentin,steroid tabs and a tablet to help with fatigue today,takes 12 wks to kick in.

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