I'm interested to see if anyone has been in this situation and can offer any input. So I've been pretty unwell for some time and had to take alot of time off work on and off. My vasculitis is only one problem but it has deteriorated significantly as a result of me not being able to have my previous immune suppressants due to a depleted immune system, recurring infections and other complex related health issues.
My vasculitis affects me neurologically and I'm struggling to work as its affecting my ability to concentrate and my symptoms deteriorate each time I work and all I am doing at the moment is working, returning to bed with severe headaches and other related symptoms until I need to work again.
So I am thinking of leaving work, rather than take more time off which is just like a sticking plaster, I feel better when I'm off, return to work and then deteriorate again. I'm also worried that I'm making myself worse by trying to continue on when I'm so unwell. Also for one, I only get SSP when I'm signed off so that causes stress in itself and puts me under financial pressure, plus I work for a small company and leave them short staffed, I don't feel its fair on them but also feel pressure to get back to work when I'm off, partly for financial reasons.
I feel like I need a significant amount of time off, to get my health back and limit further possible damage to my health so I'm thinking of leaving my job and applying for universal credit and hoping I get the limited capability for work element. However, I was in this situation years ago, carried on working until I made myself so ill that I had to leave my job and had over a year of the appeals process to get the old style ESA. I'm really hoping that with universal credit this isn't the case and they will recognize how unwell I am but it is a risk leaving my job voluntarily.
I know that a benefits advisor couldn't advise me on the outcome with any certainty but wondered if anyone has any experience similar to this recently with universal credit or has any words of advice.
Thanks All
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Galaxy2
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Hi Nadine, thanks, yes I have applied twice before and never been successful. I used to have very poor mobility which has improved now thank fully and was turned down then which I was surprised about. I think it can be a lottery who assesses you and their knowledge on your condition
It sounds like you have been thinking about this for a while, and this may be the best course of action for you.
There are a few things I would check / rule out first before going down the universal credit route:
(1) Is going part time an option, or are there any adjustments you think could be made to help you stay in work if that’s something you want to do? If there are things that you need to help you in your role e.g. OT recommended devices, the government can fund it via Access to Work (gov.uk/access-to-work). Alternatively, is there a different kind of work you could do?
(2) Are you eligible for early retirement?
(3) Are you financially secure enough to withstand some of the “teething” issues with universal credit and personal independence payment? (I’d look at PIP too as that’s something you could apply for now, while in work and continue to receive if eligible). I know you’re not allowed much in savings but if you rent or have a mortgage, how much “wiggle room” do you have if they don’t put you on the right rate? I believe UC does offer you a lump sump which can sometimes help (though you get less if you take that option as you are “paying it back”).
I’m sure you’ve thought about this and I know there are disability discrimination laws in place but the facts are a bit grim: in percentage terms, there are twice as many disabled* people who are unemployed and want to work, than there are non disabled people who are unemployed and want to work. (Statistics: gov.uk/government/statistic... * disabled means someone with a chronic health condition that significantly impacts their daily life - visible and invisible conditions. My concern in your place would be, would I be able to get back into work if my health improved later and I wanted to work.
If you want to work and need time off, don’t feel guilty about it, you are still an asset to the team.
I have a friend who has been out of work for ill health and like you, they ended up having to go down the appeals process and it was quite traumatic. When their health stabilised, they ended up going back into education / college, to help them get back into work. However, sometimes it’s best just to take a break. You know your body and your circumstances best. Hope this helps.
Hi Citygirl, thanks so much for such a detailed reply., its really appreciated.
You are right this is something I have been thinking about for a long time. I've been here before too, its demoralizing really, over the years, how many times I've changed/left jobs because they became too much and found something that I've thought is more suitable only to find I'm back in the same situation.
It is such a difficult decision with so many factors to think about. You are completely right too, it is so hard to get back into work once you've had a long period off work ill and have to explain why at interviews, if you get that far.
You might be wise to think through having time off to recover and then a graded return to work. Often people with chronic illness try to return too soon. How you feel after a weeks rest is different to how you feel after a weeks work.
Thanks Amy, you are completely right, I've done this before myself, I always feel so much better once I'm off and underestimate just how work the takes it toll on me.
The trouble with giving up work is it may solve one set of problems, but create another set of issues which are equally stressful and detrimental to your condition. I think you need to speak to an external HR consultant. It could be that the Citizens' Advice Bureau can help you. Then you will have to speak to the management of your company, perhaps with some external support. My experience of working in small companies is the HR is poor or non-existent. I hope you have better luck.
This is just a small thought - and I don't know if it would help you in your situation - but would reduced hours and a job-share be a practicable option between full time work and giving up completely? If so, you could still get some income from your work, maintain whatever social links you have with your colleagues, and still make your expertise available to your employer, while reducing the physical burden to yourself.
I’m so sorry you’re having such a rough time. I was in your situation 6 years ago. I worked for a small business and was getting frequent infections often putting me in hospital. I set up my computer so I could wfh when i as bad. The strain of worrying about work was making things worse. My boss was understanding but there were things only I had the knowledge to do. In the end I decided to give up. I felt a lot better for not having the strain. I had some bonus to come and some savings I applied for continuation based ESA which I received and was never asked back for assessment. When I started to feel better I did some freelancing from home within the rules of esa. It’s a tough decision and one only you can make. The loss of earnings is huge. You’ve had some excellent suggestions above and I hope they help you come to the right decision for you.
Thanks so much Mooka, it is such a huge decision, balancing income versus health and quality of life. My work are very understanding too however even with all the adjustments I have in place, I question whether I am well enough to work at all.
I sympathise with you. I left work in the end for the same reasons as you’re describing. As a result long term I am much better and my mobility and phases of relapse have settled . I do miss work psychologically and feel my self esteem has suffered as a result of being ill health retired but health wise o feel it was the best choice as my health has improved immensely.
I couldn’t work at all but remained with my employer until SSP ran out as my consulant was happy to sign me off as I got for any work. They were very understanding and completely got that my condition (end stage kidney disease courtesy of vasculitis) made it impossible for me to work. But SSP ran out and it was clear to both of us that I wouldn’t be able to do the same job again. They did offer me alternatives eg a desk-based job but at the time I didn’t have enough energy or concentration to even do that so I left. A payout for Critical illness cover has helped me financially (Aviva confirmed very quickly I was eligible due to the kidney failure) so I’ve been fortunate in that respect. Good luck, keep exploring options and I hope your health improves.
HiI used the Benefits and Work advice for both PIP and new style ESA. Had to appeal PIP but got it before it went to tribunal. ESA work coach was very helpful on my first telephone interview after applying online. Successfully awarded that too. Hope you are successful in whatever choices you makeWarmest wishes
Thank you Varp, benefits are a mindfield aren't they. I was on ESA for some time years ago as I was off work at one stage for about 3 years, I had to go to a tribunal for it but did get it eventually and at the higher rate with an indefinite timescale. thank you
Hello Galaxy 2. I also have vasculitis and have in the past been very ill which meant I was in and of work. You have a job with all the benefits that this allows you such as SSP, pension contributions, protected status as someone with illness/disability and the legality of your employer having to make some allowances for you. Looking at all of this in my own situation, I decided to work part time which enabled me to have days to recover when I was ill. I also applied for pip which was successful. When applying for pip, it is important to keep a detailed diary of what you can and can't do, who helps you, if you're on your own, if you're struggling to do things yourself, even down to making a drink for yourself when you're really poorly. The simplest things can be really hard when I'm having a flare of disease. Bombard these people with information and explanations about the medical terminology. I can't pretend it was easy but in the long run, part time work really kept me sane, allowed me to maintain friendships at work and contribute to life in general. Good luck with whatever you choose and remember that the decision you make is always the right one for you at the time.
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