January's Blog (Part 1) - Kevin's experiences of claiming benefits with lupus

For January and February this year we are featuring stories from people with lupus on the topic of benefits. The first part of this month's blog has been written by Kevin about his applications for ESA and DLA whilst living with lupus. Thank you Kevin for taking the time to write this for us.

From what I have read about other people’s experiences, I guess I have been lucky.

When I applied for ESA I filled out the application myself but used guides from the Benefits & Work website (I paid £20 to join so that I could get full access to everything I needed). Using the guides they provided was crucial in how I was able to understand what DWP wanted to know. I realised I would get nowhere generalising about how SLE had changed my life. I also had chronic severe fatigue and anaemia on my medical records; At times I have problems even walking a couple of hundred yards or less. I made sure my GP was aware of this and he put it on my records. Things like that are crucial because when DWP contact my GP that will be passed to them as it is recorded, so this backs up the personal information I gave them. When filling out the form, you have to give as much information as you can. I realised that when DWP contacted my consultant, specialist nurse and GP, it is the GP who is the most important one as he knows me better (so his records on me had to be up to date). Also I knew it was my responsibility to make sure that they were.

As a result of doing all of this, after waiting about 16 weeks I got my letter from Job Centre Plus informing me I had been placed in ESA Support Group. I was not called in for a medical. My review is overdue, as it should have been in May. The initial award was for 18 months.

I also applied for DLA but that was before I had to claim ESA. I was still working then but had cut my hours down from 40 to 16 eventually and was struggling with that. I went along to my local C.A.B and got an appointment with a "specialist”. At the time I thought she was brilliant and was really pleased. Unfortunately the claim was rejected, but now I understand why. She generalised most answers on the form about my condition and there was no real, personal detail about how I coped (or didn’t) with things.

I personally wouldn’t use C.A.B again. I know there are very good advisers out there but if you can do the claim form yourself I would now recommend joining LUPUS UK as they have a professional membership to Benefits & Work, so you can get all the information you need to fill out any benefits claim form from them - and it’s cheaper than joining B&W.

Part 2 of this month's blog will be posted later this week.

As Kevin mentions in his story, LUPUS UK is a member of Benefits & Work and is therefore able to provide their guides for claims and appeals on a variety of state benefits to members of the charity. You can find out more information about the guides we have available and how to request them at lupusuk.org.uk/living-with-...

5 Replies

  • Hi

    I have just had my esa stopped after apparently scoring zero on my atos medical examination. I have SLE and feel very stressed as I have no other money to rely on.I was already feeling very down and now even worse. I am really unsure how i will be able to pay any bills,let alone eat a reasonable diet. Why does the system have to be so unfair and make you feel even worse when you are not well.

  • Hi Billyjoe

    So sorry you have had your ESA stopped. If you've got the strength you can Appeal with the help of the Lupus Uk Guides and the C. A . B. Not all the advisors are the same, unfortunate experience the January Blogger had with them, may have been advisors first case!. I had good help from them when I claimed DLA a long time ago, wouldn't have been successful on my own!. Good luckX

  • So what i meant to say was that even if you fill out the forms in a way they will accept your claim ..... you may still have the unbelievable upsetting experience of an atos medical where they seem to just make any decision they like, with a total disregard for any of the symptoms you may have that go hand in hand with your struggling for everyday life while suffering with SLE

  • WHY do people with long term health conditions that are never going to improve have to go through all this WHY don't the DWP understand these medical conditions these are the problems that need sorting not having to pay to join a web site that explains how to fill in a form, sorry rant over but needs to be said

  • I also send copies of all letters and appointment cards from GP, Consultants and any health professionals, as evidence, along with the forms they ask me to fill in which takes an age but worth doing. I have been awarded ESA and DLA. I have mental health issues as well as Lupus.

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