Behcet's Syndrome Society
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Esa about to expire

Hi all, just wondering if anyone could give me advise or put me in the right direction. I have been on contribution based esa (wrag) for nearly a year after being diagnosed with behcets in January 2014. I am currently having a flare which includes mouth and genital ulcers, pains in my legs, headaches, it also feels like my left arm is dead so to speak but its alot worse during the night and can't sleep. My elbows are painful and feel really low at the moment. Now im worried about what id be entitled to claim if anything. To be honest I know in myself I couldn't possibly do a shift at work with how I feel right now which annoys me as ive worked since I left school (now 39).I am currently on mmf, prednisone and colchicine. Any advise would be appreciated

2 Replies

Hi there

You may not have realised that this posting is not on the privacy setting and thus is going out of this group to the rest of the internet. ........Some of the people here may not reply as much because of this and so you can delete this one and start again by making a new post and ticking the privacy button called "Community". That way any personal information written is kept within this group.

I am guessing that if your ESA is about to expire that the Benefits Agency will be sending you another form to fill in ...are you in the Support Group that doesn't require you seeking work at the moment or in the work-related activity group which requires you to attend work related interviews etc.

The Citizens Advice Bureau are helpful when re-applying for Benefits and if you are attending one of the C.O.E Centres of Excellence] they also have support workers that can also assist with this.

My advice would be to collect together all the Doctors reports that you have that support the problems you are experiencing and when the new form arrives to copy them to attach to the form. I always write my own response in my language to tell the examiner just how much this is affecting me and this would include personal symptom info as well. Fill in your form as if it were your worst times and don't leave things out that you think are embarrassing.

Once you have this info and if you feel confident to fill in the form yourself, you can attach it with the reports etc....otherwise take it all with you to the Citizens Advice Bureau and they will compile it together for you.

Hope this helps......don't worry if you want to start this post again under the privacy setting as I will pick it up again from there


Hi ev074. You have said you are in the Work Related Activity Group (WRAG). After the maximum year of Contributions-based ESA you have a number of options. You may be eligible for non-contributions-based ESA or JSA, or you may undergo another 'medical assessment' to see whether you are eligible for the ESA 'Support Group', which is the group for those considered unfit for any type of paid work whatsoever and is not means tested. Generally, only those who are EXCEEDINGLY debilitated get into this group. Non contributions based ESA in the Work-Related Activity Group and JSA (Job Seekers Allowance) are means tested.

If your illness affects you on a day-to-day basis to the extent where you need assistance to care for yourself or with mobility, then you might consider applying for PIP (Personal Independence Payments) which is replacing DLA (Disability Living Allowance). PIP is non means tested and continues to be paid even if you are in work.

Apparently, these days many people only get the benefits they are entitled to after being refused and going on to make an appeal - so be prepared to dig your heels in. From what I understand it can be a complex and drawn-out process.

There are some free tests on the Benefits and Work site which will give you an idea of the descriptors that the assessors use when testing you for ESA Support Group and PIP

(Benefits and Work can be a useful site but a good deal of the information is only accessible if you pay for it. It's not a huge amount - about £20 a year? Even so, several days food money for someone on the breadline, which I think its a shame. But some of it is free, including the above tests.)

If you are still eligible for ESA (WRAG) after your contributions-based ESA ends, but are not entitled to the full benefit payment because (for instance) your partner works, then ESA will at least pay your NI payments for you. It is easy to forget to keep your NI payments up to date when you are ill and not on benefits. It is essential to have NI payments for a number of years to be eligible for a full state pension, with additional pension, when the time comes.

As you have worked for over 20 years, you may already have enough NI to be eligible for full state + additional pension. Pension rules and methods of getting a State Pension Forecast have changed since I last did it so you may have to ring up somebody at the Dept for Work and Pensions or Citizens Advice: here is a starting point:

As Adrea has pointed out above, the Behçet's Syndrome Society have support workers at the three UK Centres of Excellence who can advise on Benefits, according to this page:

It looks like you might be able to approach them even if you are not a patient at one of the centres.

Hope this helps.


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