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As some of you know I am struggling with working a fairly physical job with lupus and Hughes syndrome and am seriously thinking about leaving work as every day is a struggle

And work is making me worse. Do any of you know what I'm entitled to and rough amounts as I need to make sure I can afford to give up work. My partner is a full time student and we have a 4 year old daughter so I am the main earner but only earn about 700 a month as I reduced my hours to 20/ pw. Any help would be much appreciated x

8 Replies

Hi it is worth calling the DWP Benefit Helpline - they will be able to advise what you may be entitled to. It is best to get the information from the "horses mouth" as I have heard of people acting on best intentioned information from friends only to find out that it is in someway incorrect. The no. is 0800 88 22 00. Good luck



The Citizens Advice Bureau will be able to help you


I think it is quite difficult for people with lupus to get disability benefits. That is what I have heard - and I am not sure how things are under the new regime of assessments by ATOS. I am about to find out - having been made redundant and with lupus nephritis. I'll let you know!


Please think about it very carefully. I know several lupus sufferers including myself, who have scored 000 points at the employment support allowance assessment, when minimum 15 is needed. To put this into perspective, I permanently walk with specially adapted crutches after a 3 month stay in hospital. I am consultant care psychiatry for depression and have carers to help me bathe, yet with 00 points there is apparently nothing wrong! Also you can only claim sickness for 12 months anyway.

I used to work in human resources so my advice would be to speak to your employer about maybe reducing your hours or maybe even altering your duties. And something I shouldn't say but make the most of their sickness policy if they have one! Remember, an occassion of absence is 1 occassion regardless of period of time. So 1 day or 6 months, as long as it continuous and covered with a sick note. Once you leave employment it will be very difficult to get back in to if you find you need to.


Do give it a lot of thought I have been turned down three times for DLA and I really could do with the mobility component as I have to depend on my daughter for shopping. It also means a considerable cut in your income if you go on the sick.


I am so sorry to hear of the terrible choice that you feel you have to make, firstly you need to be assessed to how ill you really are and I think your first port of call has to be your GP. They know you better than most healthcare professionals. Once you are in the ESA system you will get about £67.50 per week I think but am not exactly sure and after a while they send you for assessment which is so flawed it is unbelievable, how do I know ? Ive just won my appeal after 13 months and you really do have to jump through hoops. It is quite dreadful the way that the DWP conduct these assessments and no doubt you will have heard of different groups complaining and campainging against it. I hope you find a way to deal with this difficult choice youre faced with, nobody asks for illness but when it comes it is nice if there are things we can tap into, sadly we are where we are because of all those shirkers and scroungers who will not work and just sponge off the state, they are the ones who should be targetted not the genuine ones like us. You like me have paid into the system so when you need some help it should be there. I know this seems very negative but I feel you need to know what you have before you. I wish you all the best.


Do discuss with GP and occ health at work. Also if you have a work union rep they may be able to advise re any ill-health pension that you may be entitled to

Personally I would say that if you can manage to stay well and stay working that is the best option (even if it meant changing your job) I say this because the money available from social security/ govt is not much and it is a "battle" to get

However I had to retire due to ill-health due to my lupus and one thing that helped the finances was that I was entitled to an ill-health retirement pension (if you are in a works pension scheme this may be an option for you - but at first you would have to be on long term sick and/or work would have to look at other options eg work less hours, work a less demanding role etc before they would go dowm the ill-health retirement route- this is because they have to try "reasonable accomodation" of your disabilities)

If you do decide to go down social security route. This link may help give you info on rates etc

DLA is available wether you work or not but as far as I know it is very difficult to get - to qualify you must have severe mobility problems and / or need help with care (eg help at night, help getting washed & dressed) I'm retired due to ill health and yet do not get DLA as my disabilities were not considered severe enough. I think in some places DLA is being replaced by a similar system PIP (personal payments) but the rules for if you qualify are similar

If you can not work ESA should be available - I think you have to have had your Statutory Sick Pay ended before ESA becomes available so you probably have to be on long term sick from work first, get SSP, then get ESA

To qualify for ESA you need to score 15 points on there assessment form, and probaly would have to go to one of their medical assesments. This blog has a link that helps explain what points you may score, and how fatigue and pain should be taken into account in assesing wether you can do a "task" / thing on the form or not.

ESA is a fairly new system this link explains a bit about how ESA works -

A lot of people are having to appeal decisions made as to wether they get ESA or not , or appeal to be put in the "support" group rather than the group that expects you to prepare to return to employment -the "work related activity" (WRA) group.

It is likely that you will need supportive GP , consultant etc to back up what you say you can not do - particularly if you end up having to appeal

As well as CAB advise, try see if your local council social services dept has a welfare rights officer who could advise you and help you with any forms, appeals etc


Hi, I think it was slightly easier for me as my work ended my employment through ill health (it was a local council). I really do think this is better than leaving as it is seen as other people thinking that you cannot work and not just you.

If you are in a union you should ask for help from the legal team and they are able to initiate the medical assesment.

Hope it helps Helen


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