Where do I start??? I am currently having a nightmare!!! Due to complications with my lupus...confusion...fits.....I have become fearful of leaving the house. After many excuses for not attending medicals with atos I received a letter saying that I have to attend the medical app I was given or they are going to stop my benefits.......There is no way of explaining the anxiety and stress this caused but feeling I had little option I had no choice but to attend! During the medical i was shaking uncontrollably and crying continuously as I explained my problems symptoms and how i was affected....explaining I have only left my house ten times or less in the last 3 years, cannot go anywhere alone and also explained the problems I have with mental health...how I cant cope with changes or stress etc.....I also showed the medication i was currently taking.....reboxetine, escitalopram and 600mg of amisulphride (which is a particularly high dose). I left the assesment assuming the assessor understood my issues...how wrong was I?
I received a letter stating I was fit to work and my benefit was stopped....whats worse is the letter explained I had not received any points! THEN......it stated I had no problems with change...was able to go anywhere alone and I appeared mentally well and was fit to work!!! I was speechless..........it just didnt make any sense!
My problems worsen as my money had stopped including housing benefit......but my problems still exist and anxiety kicked in........unable to go and get a sick note I have had no food for 4 days now....even before this survived on dry bread (no exaggeration) now my electric has ran out and my rent was due this week when i havent even paid last months rent! I have no family or support so I am seriously in danger of being homeless very soon!
Due to stress I have had extreme migraines with sickness for weeks and even considered suicide rather than go out and resolve this! Today im going to dctors well thats if i can do it.....doctors appointments cause me anxiety as it is due to endless appointment where i was told my problems where in my head before i was diagnosed....I just hope i can do it!
I receive DLA which to me makes no sense....my problems are enough to receive DLA yet not enough for esa???????
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borisminor
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Hi there - you need to go to your GP with everything in short bullet points so you do not miss anything out, you also need to contact your MP, in extreme circumstances they do do house visits. You also need a friend or a relative to help you and be your advocated and if possible attend both appointments with you. I hope things improve for you. Mary F x
Thankyou for replying.......The bullet point thing sounds a great idea as my head spins in appointments! Im gonna write them now......I have no relatives and since lupus my friends have dissappeared...thanks mary x
Please ring citizens advice for some help. You need to appeal. Also, ring occupational therapists for some support. They can provide you with aides around the home and letters of support regarding esa. The council can give out payments for housing benefit without you claiming esa. That's the position I'm in at the moment. I'm waiting to get esa. The whole system is disgusting and unfair. I know it's easy for me to say this, but you have to fight this. Social services are full of useful information too. Give them a call. You need a support network. Please keep in touch with everyone on here. It is a lifeline. Xxxx
Hi thanks for replying.....I wasnt aware you could phone CAB...and occupational health didnt even occur to me. Reading you say 'you have to fight this' made me cry....think its because you are the first person who has cared enough to say this.....I feel a little fight spark inside me reading your reply...so thanks....It means a great deal x
My occupational therapist is amazing. She is so supportive.
Please try to call them asap. I think you may feel slightly more positive with a bit of support.
Do your doctors do home visits? Try speaking to your GP over the phone. Tell them exactly how you feel. They can help you. I wish I could do more. It's a lonely place to be. Lots of hugs xx
This is a horrifying story, but sadly not too surprising. This is how things are.
You need some help - and I hope that perhaps your local CAB might be able to advise you of organisations or charities which have the expertise.
Of COURSE - this decision is blatantly wrong. But you are left with only the option of appeal. I don't think the State is allowed to leave you to starve to death, though I suspect that now you need to sign on for JSA just in order to have an income while you go through the process of appeal. I may well be wrong about this - so please get some professional advice about what to do next, but it seems to me that your immediately problems are 1) getting some cash so that you can eat, and 2) doing something to get this farcical decision reversed.
I hope others know more about this than I do - but wish you good luck in finding someone who can help in getting this appalling situation reversed.
Thanks for reply........JSA does seem logical but in my situation i feel id rather stare to death than face the world....im stuck...wish i could make my fear go away but its very real! you have all spurred me on to get the help i deserve so thankyou x
AND you must be up front with your GP as to how very depressed and stressed you feel! It is important that you can have some help. Your MP will help if you explain! Be firm with both parties. MF
Hello hun. There is a person on the Hughes community here called AndrewTheCarer who seems to have a lot of info on who to contact when benefits have been (or might be) taken away. If you join the group and send him a personal message, he might be able to give you some advise.
i'm sure you can get legal aid lawyers who wll fight for your rights.if u lived near me i would come help anyway i could even just to feed you or give you a hug x hope you get help soon like today x
aw honey, I really feel 4 u. They r absolute s****. So many people can't get their heads around how lupus can totally mess with u're head. I went through a phase earlier of not leaving the house but luckily I have a very supportive other half. I would b inclined 2 phone Social Services as well as GP (ask 4 a housecall) as I'm sure the social would have some advice, even if they weren't ble 2 do anything. Anything is worth a try at this point. The thing is if they think u're a push over they will take the piss something chronic & as purple-lou has so rightly said, u need 2 try & find u're 'inner-bitch' & kick arse. I so wish I lived near u :0( This really makes my blood boil.
i wish i lived near you as i would go with you and support you. please find that fighting spirit thats hiding inside you and fight these idiotsat DWP they have no clue as to how lupus affects us everday, please dont give up !! big hugs x
If you're having suicidal thoughts, please speak with your GP. Failing that, please call Samaritans on 08457 90 90 90. There is plenty of support available. Please don't feel that you have to go through this completely alone.
I may be able to provide a small bit of help with your DLA. I can help you out with some guides for the appeal process, a supporting letter and a few other helpful organisations.
Please do not go hungry either. There are charities that can provide free food for people in tight financial situations like your own.
If you send me an email at paul@lupusuk.org.uk or call me in the office on 01708 731251 I'll do what I can to help.
Hi, I hope that you have spoken to someone by now, and I really hope that you can get some support and help. I am so sorry that you are going through this and feeling so desperate. (((hugs))) take care and hang in there xx
Hi Borisminor, I am so sorry that you are going through this, especially that you are going through this without any support. I had severe anxiety, panic attacks and agoraphobia when I had my first lupus attack. I was really scared, so I know something of what you might be going through. I do know that I could not had gotten through it without the help I received from family and friends. I know you said that you do not have any family to help you. Perhaps you can get in touch with your local lupus group, who may have information about support services that might be able to help you in your area. I had a support organization help me called "Key Support", however I live in the Haringey area and I don't know if this orginazaiton operates in your area. They help with ESA application and support with housing ect and they will come to your home if you are too ill to go to them. Their number is:0207 428 8500. I am not sure if this is helpful, however they may be able to direct you to another organization in your area. I can only echo what everyone else has been saying, that is you must get help and support, you cannot do this on your own. all the best.
I can't really advise on benefits but deffo call CAB. There will also be a food shelter in ur area who can drop food off. Ask the .gp for a social services referral, they aren't as scary as u think. Also take Paul up on his offer of help. He is polite friendly and a nice person who will reply to ur email. I know this as he replied to mine. Sending virtual huggles and I hope things improve quickly once u have the right help. Btw call housing benefits and ask for a team leader even if ur sobbing talk to them because they will listen and will be able to.help, my mum is a HB team leader and they will try eons hard to help xx
So sorry to hear this Boris. What an appalling situation to be left in. You should also insist on being assessed by an Occupational Therapist - talk to your GP about this in the first instance. OT Reports cannot be dismissed by DWP or at Tribunal (if you eventually have to appeal) and are the best "evidence" one can provide. I hope you get the help you need soon and please do let us know how things are going. Hugs xxx
It's not nice I'm sure you can claim for a hardship fund and you need to appeal the decision and get help from CAB or as in my case Doctors letters rheumy letters nd also letters from Lupus uk and St Thomas hospital which is what I did I also have a disability advisor helping me with my appeal and he told me while its going through appeal they can't stop your money but also make sure you take someone with you
I work with homeless folk and am sad to say this is a very usual predicament. I have lost count of the people with severe health and mental health issues who come out of their assessment "fit for work".
So what to do:
1) appeal - start the appeal process with the dwp - call them and tell them you want to do this. They will restart your ESA on a lower rate until the appeal decision is made.
2) phone housing benefit - explain your situation - believe me they will have dealt with this before. You are eligible for HB on ESA/reduced ESA and also on nil-income so they should backdate it for you when you can show your empty bank statement.
3) phone for a crisis loan in the meantime - this will give you cash for food until your next ESA payment comes through.
4) given your extreme anxiety and other difficulties I think you would really benefit from a support worker as others have suggested. Someone who comes to your place and helps with these calls/letters. Someone fighting your side with you. As you are at risk of homelessness you may be eligible for housing support from your council, and there are many charities that provide support for those at risk of homelessness or with disability. Give them a call and explain your situation. An experienced, calming voice to lead you forward can make the world of a difference.
5) as others have said - if suicidal thoughts are continuing please seek help - there is a way out of this and it wont always feel as desperate as it does just now. Your GP/Samaritans etc should make a good first port of call.
these are just my suggestions and what I would do with you if you were my client. Feel free to ignore
i can't stop thinking about your situation and hoping your ok.who are these people who have the right to destroy others lives are they medical experts do they know everything about every conidition/disease there are in the whole world i think not.do they sit exams with updated data can they tell you off hand if asked symptoms of any cond/disease.i doubt if they have any medical knowledge at all and it's wrong.so wrong and pisses me off that someone has given them this kind of power.when someone has to go to their so called meetings they should have the decency to have doctors there who know or are specialists about conidition/disease they are dealing with.i really hope you've had help since you posted this borisminor x
BorisMinor, I am truly sorry and appalled at your situation. Sadly it is common, and something I went through, horrendous.
What to do, you have been given some excellent advice, and I hope you took Paul up on his very generous offer for help.
In addition to starting the appeal process as stated by butterly, write a letter and ask for a ESA85A which will contain a full statement as to how the Decision Maker came to his/her decision.
As soon as you have this to hand, make contact with your local MP, and let him/her have a copy of this, as well as any medical notes you have to hand, e.g. prescription list, any Rheumatologist summaries, which in my case, my Rheumatologist bullet points and sends to my GP the contents of my consult. MP's get a bad wrap most of the time, but I can honestly say my local MP along with CAB were absolutely amazing.
I know it is wrong, that we have to fight in this way, which is so hard when we are already under so much physical and emotional strain coping with our conditions.
I too, really hope since your first post, you are receiving some support.
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PIP Tribunal after being awarded and within 2 months having it taken away!
PIP and Lupus
Work issues 
Am I going mad? Or is this the evilness of lupus ?
Bye Bye Xavier
