Sticky Blood-Hughes Syndrome Support
8,094 members8,330 posts

ESA what a joke!

New years eve a letter dropped on my door mat from job centre yet again asking to fill the same form out fit to work form, I had done this in march and was put in support group as there is no way i can return to work i am on nebulisers at least 4 times a day and oxygen also 3 times through the night and on 26 different medications daily,

I really don't understand the system! i have be awarded DLA for life but we all thats not really true as its now PIP and will be assed again in 2015.

The whole system just seems to cause more stress and worry . I have had all the medical evidence sent and they were happy with all that back in March but not even a year gone by and have to do it all over again.

Sorry for the rant but so fed up with it all.

Any way i guess i will have to battle through again.

7 Replies

Oh dear, what a charming New Year's present! l presume you have the correct return ammunition from before, and your GP? Please do not panic.. you have been selected to fit around a remit of institutional box ticking designed to make us all feel awful! Please make sure you get your support in place, to try and reduce any stress to a minimum! MaryF x


Thank you Mary i am so stressed and fed up it just seems so wrong for all us genuine cases we have to battle in life for everything and yet its not our fault we end up with these awful illness. Especially when all the medical evidence is there in front of them from all my consultants and GP . I get so angry as the people doing these checks don't even seem to know what lupus and chronic obstructive airways is! xx


I agree, and that is partly why I intend to start writing the book with two others with many contributors from here regarding Sero negative Hughes Syndrome, as that puts people at even great risk from discrimination. I remained sero negative Systemic Lupus until 18 months ago... even though I had clear symptoms! Chin up, we all have to firmly challenge this and yes it is awful to do so when unwell. MaryF x


Thank you mary keep me updated if you do the book i fully support you xx


I know exactly how you feel I had that nice,not, brown envelope drop through the door just before Christmas.Put a bit of a dampner on the festivities as it is always in the back of your mind. I only got home from hospital 3 weeks before Christmas after spending a month in there.

As Mary says don't panic and gety as much suooort and help as you can.




Thank you for your reply you sound like your in the same sort of position as me its so unfair i spend so much time in and out of hospital but it just seems to count for nothing the system is so wrong.

Anyway will have to wait and see what happens i will keep you updated . good luck with yours x


I've just received my esa 50 form was put in support group Nov2012 so award must of been for 18 months. They supposedly send it out couple months in advance. The longest award is 2 years. Xx


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