Last reply 5 months ago
Benefits advice after diagnosis?

Dear good people on Shift MS

I was hoping you could me. I am enquiring about potential welfare benefits advice after being diagnosed with R/R MS in August.

I currently work as an admin staff in an office, having recently reduced my hours due to my diagnosis. Although my employer is relatively understanding I am struggling day-to-day (mainly with debilitating fatigue, queasiness, brain fog etc). My mobility is fine and to other people I probably seem okay but i’m finding things harder and harder.

I am soon to start Lemtrada treatment in hospital and i’m conscious that this will involve lots more time off work (I’ve already had four months off earlier this year with my last relapse) and subsequent regular hospital visits.

As such I would like to know if I was to hand in my notice, due to MS health related reasons, would I be able to claim/entitled to any benefits? If so which ones – ESA, say?

My concern is that I look vaguely ‘healthy’, don’t have any real problems walking etc and to someone unfamiliar with the condition there doesn’t look like there’s anything wrong with me. I’m scared it’s just going to look like i quit my job just for the sake of it. Sadly that’s not the case and with the upcoming treatment I fear working is only going to get increasingly difficult/near impossible.

Any help would be greatly appreciated as I’m finding the whole damn’ thing genuinely confusing.

Many thanks


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5 months ago

Hi @jamars and welcome.

I wouldn’t even consider any of this, until you’ve had your Lemtrada treatment.

You supplied no details of when you were diagnosed or your age, so it’s difficult to guess what your post-Lemtrada prognosis might be. Some people feel that they get their life back after this treatment.

5 months ago

Basically you can get ESA, but it would be better if you were dismissed, though that is now illegal! As Stumbler says, we have no idea of how old you are, whereabouts you live etc., so fill in the bio but and then you can get more specific help. If you are suffering with fatigue and quesyness the chances are yo will be unable to work, but wait until after you have had the Lemtrada treatment, it could make the world if difference. There are other drugs to help you deal with the other symptoms, ask your ms nurse if you have one James, she will be able to point you in the right direction. You say that work has been very good so far, but it is a legal requirement, so don’t feel guilty about time off work for relapses, appointments etc., Good Luck with the Lemtrada and don’t forget we’re always here for a natter, a question, a moan, a rant, a celebration, whatever, and don’t forget with ms there is no suc thing as a silly question.😍🤙🤢👂

5 months ago

Look at Disability Rights Uk for guidance.

Re giving up work l would suggest not making any life change decisions yet.

Have your Lemtrada treatment first that’s enough to deal with.

I had round 2 of Lemtrada treatment in October and hope to go back to work shortly. This time last year l didn’t think that was feasible.

Could you possibly go part time at work or work from home?

working tax credits may be available.

You also get extra allowance for having Ms under disability element too.

Look at Access to work as well – my physio told me about this- they either offer help in keeping you in work. In my case they pay for a taxi to work there and back – my contribution is a £1 per journey. The above two mentioned allowances were given by telephone interviews.

I hope above helps.

5 months ago

As other people have said, don’t rush into changes – if the treatment works, you might be able to continue working. If your employer is fairly good ,have a chat about possible redundancy / early retirement / retirement on health grounds. If you quit, it can be much harder to get benefits. I’d expect ESA and PiP – possibly Carer’s Allowance if anyone helps you.
Don’t rush into anything and try not to worry. 🙂

5 months ago

I was in a similar situation, I work in an office and after my last relapse I was really struggling with it, fatigue & brain fog were the main problems and I felt I wasn’t going to be able to do it any more but as I don’t receive sick pay and have quite a lot of debt I had no choice but to just keep going, even though I was just getting home from work and going straight to bed every night because I felt so bad.

Fortunately I stuck at it and I’m glad I did, I had my annual performance review the other day and it’s the best one I’ve ever had, bosses are really pleased with me and I got a decent pay rise, such a difference to where I was a year ago! I didn’t change too much, tried to do a bit more exercise, ate better and took my vitamin supplements but I think the biggest healer was just time, the last relapse hit me very hard and it took a long while to get over it.

Good luck with whatever you decide to do but I would suggest sticking with your job or maybe just having a break from it if that’s an option?

5 months ago

Dear all

Just wanted to say a big thanks for your advice and suggestions – it very much is appreciated. I’ll listen to you and get the 1st round of Lemtrada treatment/recovery/time off work out of the way before making any decisions.

Be good.


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