I have my esa assessment on 8th February, but what I'm worried about is that I haven't filled in a form since 2013 !!
What are they going to be talking to me about as my symptoms have got much worse since then. I've photocopied all of my hospital letters as I've been diagnosed with Lupus sle since they last saw me, and they know nothing about my feet and joint pain I have been suffering with.
Should I be worried ? I had to appeal to be put into the Support Group and I've not heard from them until now. I really don't know how to play it if you know what I mean, but also I dont know whether they recognise Lupus as an illness for not working......... if anyone can help or tell me if they are in the Support Group and have been called in for an assessment too that would be helpful.
Thank you.
Written by
georgie63
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Always tell them about your worst days & be aware they are watching how you move. Of course, symptoms vary by min, he, day but tell them how it stops you from functioning. What can't you return to work?
Take your hospital letters with you for them to copy. So many people go to those assessments with walking sticks talking about various aches & pains that it makes it challenging for us to be taken seriously (esp when we look well on outside).
The Assessors never used to be highly medically trained so do they even know what Lupus is or that other health conditions can be triggered? I live with 8 health conditions now. Might be best to take someone with you, esp. If you have mobility issues.
when I first claimed ESA in 2010, I was having Lupus flare-ups & chest infections, then I went for assessment in 2012 with severe arthritis, Lupus flare, fatigue, chest infection. They did not acknowledge Lupus during assessment & failed me. I put in an appeal.
Two mths later, I found out my symptoms where due to pneumonia, severe anaemia, gastroenteritis, suspected lung cancer/TB & had triggered APS (Thrombosis). I was in hospital for 3wks. I copied & sent them all GP notes & hospital letters.
5mths later, they offered me tribunal. On the day of the tribunal, the ESA judge office contacted me & advised I don't need to come & of course I'm entitled to ESA. I think I was put on working support ESA.
5 mths later, APS was causing me blindness so I had chemo for 5 mths. Thankfully it was successful! 3 mths later, I had Shingles for 1mth & crippling Anaemia for 7mths. I still have Anaemia but I'm functioning.
2015 - I had so much testing done due to not digesting iron at all, a lump on my breast & spasms around waist/hip area. All my organs were tested. Dec 2015 found Fibroids & Endometriosis so in 2016 More testing will be done (but at least it's not Cervical Cancer). I've been traumatised by it all so don't know when I could've gone back to work.
I'm about to start counselling, I've been booked onto Expert Patient Programme (small group 6wk course to help those living with long-term health conditions cope). Also I've started to do more gentle exercise to build up my stamina, muscle & fitness after so much illness. Also I'm planning to go to well-being seminars to learn to live a healthier lifestyle (hopefully will improve my mind, body, spirit).
If you've read to this part, I wrote this so you know how living with Lupus can affect each one of us differently. I don't think this is acknowledged enough & some medics expect us to have only certain symptoms that we have to live with so better get used to it & move on....if only it was that simple.
Good luck with it! Stay focused! Stay positive! Pls keep us posted!
Blimey you've really had a rough ride with it all haven't you.
Now after reading your post I don't feel like I'm ill enough now...lol
I have the lupus mainly in my skin and joints, and also the fatigue that comes with that, I also suffer with severe pelvic pain for which I take morphine for, thyroid problems, psychotic depression and now I have Osteoarthritis in my knees, feet and I think my hands are going to be the next to get it, as my fingers swell up and I keep getting pins and needles as well as pain within them.
I also had pneumonia which think was the start of my lupus too, and it wasn't long after that I had these lesions and pastures open up on my arms. At one time I had 11 all on one arm and no one knew what was going on, I had loads of tests and all came back normal. It wasn't till I was having severe pain in my knees that visas then referred to a Rheumatologist who then diagnosed me to have Lupus sle. For which I now take hydroxychloroquine.
Before all of that though I had my pelvic pain which was the first of my illnesses and I was taking a lot of time off work with pain. I had a lot of explorative operations for everything again to come back normal. Nobody at work believed me as to what pain I was in and with the pressures of work I got depressed quite quickly, I was then self harming as I felt I had to show people what pain I was actually in.
I was then signed off work and then everything else took hold. I am in too much pain to even think of returning to work, and I walk with a walking stick due to the arthritis in my knees and feet, for a 44 year old I'm doing a very good impression of an old lady....lol
I did have to appeal to get put into the Support Group for ESA and I haven't been since then. I just hope that I can stay as I am and that I'm believed to being in real pain. As you said lupus affects people in lots of different ways and its all the little things like dry eyes, dry mouth, extremely itchy skin which I can't shower with normal shower gels I wash with Aqueous Cream and have steroid cream to put on three times a day. I overdose on antihistamines to get rid of the itching. To have a shower I take 9 tablets to get rid of the itch, otherwise it's just unbearable, not to mention sporadic episodes of itching for no reason.
Anyway, it looks like we all have our different ways of surviving with what we're having thrown at us, it makes me feel like I must have been a nasty person in a previous life to be given all of this to cope with.....lol.
I appreciate you answering my post and I'll report back as to how the assessment goes on Monday. Luckily my mum is coming with me, she's my rock and I couldn't do any of this without her.
Thanks for your advice mangle and I wish you well.
Lupus is recognised as an illness that can effect your working life so you have nothing to worry about in that regard.
Good job on keeping all your hospital letters they'll definitely come in handy. Take a look at the Citizen's Advice Bureau recommendations on how to prepare for your ESA assessment because it's got some great tips: citizensadvice.org.uk/benef...
When you say you haven't filled out a form since 2013, do you mean that this has come a bit out of the blue? or that you're not sure how you'll cope filling things out?
It's not out of the blue as such, but I thought when you had a face to face assessment it was to discuss the form that was sent out beforehand.
I haven't filled out a form since 2013, for which I was then put into the working category, I then appealed to be put into the Support Group, which then took place and I haven't heard from them since now.
So what are we talking about ? I've since been diagnosed with Lupus and I rang them to say my situation had changed a year ago and I was told "we don't need to know that, explain in your next assessment".
And here we are. But am I going to be frowned upon for not completing a form, but it's not my fault I haven't been sent one. Or am I worrying over nothing ?
I can't be sure. Though it sounds like they might just be reassessing you.
In 2014 (when you would have been due for annual reassessment) the system was changed, stalling the reassessment process for a full 2 years. I think it's likely that this is the case. You can find more information about this here: benefitsandwork.co.uk/news/...
Do you have a number to call? Ask them if it is a reassessment. Also, ask them if they want you to bring anything with you (i.e. forms) and see about any preferences you might have re: location, whether or not it's to be recorded etc...
I was called for an assessment last year and it would have been somewhere with lots of stairs, so I rang to ask if it could be relocated, they then gave me somewhere else.
I then became a member of benefitsandworks.co.UK and heard about asking for it to be recorded so I requested and they then cancelled as they hadn't the equipment, so now I've got this one, I just feel I should just go in case they say thats 3 meetings I've tried of wriggling out of....lol
Lupus is recognised as an illness for not working in some cases but because peoples symptoms vary they look at each case individually.
I'm not sure why they have not reassessed you since 2013 and your Lupus diagnosis, perhaps that's why you now have to go see them.
When they decide what group you are in or wether you even should get ESA at all they use a points system ... They are quite tough about where they score you, so they won't apply if you just occasionally have a problem - but they are supposed to score what you can achieve reliably, repeatedly, safely and in a timely fashion - if you can't do something 51% of the time, it should apply. Lupus fatigue is hard to pin down, but it often means you can score because you either might not be able to do something in the first place, or it would cause such a serious after-effect that you couldn't repeat it or do anything else for the entire day.
These links are to how they score you for WRAG or Support group
Try to fit what your symptoms are and what you can or can't do to how thay score you, for example if you can't walk more than 50 meters because of exhaustion and or pain, or can't do this repeatedly then you should fit that "score". At assessment they may ask things like how did you get there, how do you do a supermarket shop to try and see if they think you can walk far or not
The support group is very hard to get. However I have lupus and I got it (after an appeal). I did not fit the score descriptors for support group, but there is an "exceptional circumstances rule" which applied to me. Here is a link to the wording of " exceptional circumstances" see page 31 ... issuu.com/atosvictims/docs/...
To get this exceptional circumstances rule applied I had to prove (and have Drs support) that there would be a substantial risk to my health if I was put in WRAG and not support group
I don't know if you have time before your assessment but it may be worth seeing if your local council social services have a welfare rights officer who could help you. I had their help for my appeal and it was really useful
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