Hi, I have been diagnosed PPMS since 2015. Now 36. When it all started I was a full time regional manager for an estate agent. I am currently on 20hrs per week office worker. But due to the fatigue and memory issues I am feeling more and more inclined to give it up. I was lucky that when diagnosed I hade critical illness cover to pay off my mortgage. So financially I think I can afford not to work. I dont know what is stopping me. I think the stigma surrounding living off the state getting benefits and âscroungingâ Dont get me wrong I have worked full time my entire adults life and paid into the system. I have been dealt a crap hand. Should I just let go or struggle on as there are people worse off than me that continue to work, but on the flip side people that just milk the system for all its worth.
Hello
The problem you are going to face is that if you voluntarily give up work, you could find youâre not entitled to any benefits. Youâll have made yourself âintentionally unemployedâ. I think it means you probably wouldnât qualify for Jobseekers Allowance (ex Unemployment Benefit).
On the other hand, if you have to give up work because you are too ill to work, youâd really need to have been off work sick before quitting (assuming you want to claim Employment and Support Allowance, which used to be called Incapacity Benefit and way back Invalidity Benefit). Even then, the rules are quite complex.
When you make comments here about âscroungingâ and people who, âjust milk the system for all its worthâ, it gives the impression you think the less of people who do claim benefits and that there are many, many people who are able to claim despite not being truly entitled. Once you start looking at the complex and convoluted rules for claiming benefits nowadays, youâll realise itâs not as simple as that.
Iâm not trying to be dismissive of your perspective, but it does seem you might need to do a bit more looking into the rules for claiming. Itâs certainly much harder than some of the press seems to paint it.
Have a look at Sick or disabled people and carers - Citizens Advice It might be a good place to start.
I certainly understand the feeling that life trying to work together with all the challenges brought by MS is becoming impossible. I had to stop work in 2006 after 9 years with MS and I wasnât much older than you are now. Itâs really difficult adapting to life without a job. Obviously when work is just impossible, itâs essential. But you do need to think about how and when you stop work. If you just quit without knowing the rules, you might find yourself with no income. Having your home paid for is good, but you still need money coming in (I assume.)
Sue
Sueâs advice is good 
Youâre fortunate that youâve got the CI - most arenât so well-provisioned. However, you need to put aside the feelings of guilt. Youâve been struck down by a horrible illness whilst others are walking around healthy. Itâs the card youâve been dealt and civilised society is configured for the stronger to help those more in need. Like you, Iâve paid in loads to âthe systemâ when I was healthy and donât feel bad about drawing some of it out again. You donât need to dwell on those âworse offâ than you - youâve got enough on your plate. As you know, MS doesnât let up, you donât get better and youâre struggling on âonlyâ 20 hours. Iâm sure with your work ethic and background, thatâs probably way too much for you already - am I right?
Talk to CAB or look on websites like entitledto about ESA. Also look into PIP. If memory serves, there is a significance about working below 16 hours - youâll need to research that. Also look at your CI policy T&Câs. The good thing is you have 6 years of MS history with the Doctors (GP & MS) plus reducing hours at work and your GP will write you a Fitness for Work note which you can then upload to ESA (part of DWP). After quitting work in July, my GP did 2 months at first, followed by another for 3 months.
Youâll know when is the right time to go, but donât make yourself worse out of pride. On here, we all âget itâ as weâve all got the same/ similar stuff going on as you.
Hi, mmmmâŚyou are in a quandry about how to move forwardâŚI fully understand, as I was in your position way back in 1998/2000.
I came from a family with a strong work ethic and felt working and paying your way was the right thing to do.
I struggled with fatigue, falls, continence issues, and poor sleep, before I accepted that something had to give.
I saw my GP about something unrelated and she commented on how tired I lookedâŚwell that forced the floodgates to open and I burst into tears.
She put me on the sick for 2 weeks and I never went back to work. I worked for the LA and they were very good. I was on the sick for 8 months, before it was mutually agreed that early retirement was the only option. I was only 47.
So you see, to qualify for ESA, you have to go sick first and let your firm finish you.
You need to weigh up how you are feelingâŚif work really is too much for you.
There is no shame in being disabledâŚtoo ill to workâŚdo not align yourself with benefit cheats and idle shirkers.
Good luck whatever you decide chick.
Love Boudsxx
Exactly as Bouds did it, in order to later qualify for ESA, you really need to have stopped work because you are sick, ie have been signed off work by your doctor.
In my case, in fact I was initially made redundant (essentially because I was the only employee in my company who did exactly the job I did and I just wasnât well enough to do the job). I signed on for JSA for a couple of months while I tried to get well enough to actually do any job. Eventually I had another relapse that meant I signed off sick from JSA and claimed Incapacity Benefit (what came before ESA). I never managed to work again and stayed on ESA.
You do need to either learn the rules, or get some good advice from eg the CAB.
Sue
Same here, Sue.
I shut down my company (mostly just me) earlier this year and signed on for JSA. Commuted this to ESA, accompanied by a confusingly-named Fitness to Work note for a couple of months. Got a second note when that one ran out.
Although JSA & ESA pay the same ÂŁ74.70/week, ESA also pays your NI stamp which contributes to your state pension later on.
The other thing is of course that if youâre on ESA for 3+ months and the DWP place you in the âSupportâ group (as opposed to the âworkâ group), your weekly payment increases to ÂŁ114 per week. Contributions based JSA (ie based on the NI you paid during the previous 2 tax years) is limited to 6 months whereas ESA is not time limited.
Obviously, you can get low rate ESA for a short period without completing long, complex claim forms and submitting endless evidence to demonstrate youâre not fit to work. But to continue getting it for long periods of time it can be a souk destroying process.
Getting help and/or using reliable guides to claiming is essential. I use https://www.benefitsandwork.co.uk/ They charge for membership, but a year costs about ÂŁ20 - well worth it for the detailed guides to PIP and ESA.
Sue
I canât comment on the legalities like the others, because Iâm in the US, but if youâre struggling with part-time work, itâs past time to look at your options. I tried to keep going too long, and I really think it negatively affected my health. Iâve been âretiredâ now for 2 years, and Iâm just getting to the point of undoing the damage of pushing myself too hard.
I made the mistake of switching jobs and then reducing my hours, and I shouldâve just stayed where I was, taken sick leave, and gone from there. The governments like to twist things up for systems we pay into, so make sure you get proper documentation every step of the way. Part of that involves when you stop pretending that youâre okay and let people know that youâre really not.
Wow, thanks Sue - I didnât realise there was more money at stake for the support group. I did my first 2 months, got a Fitness note for 3 more months and submitted the ESA50 form, so I guess Iâll get the uplift, based on the scoring indications.
Strikes me that PIP & ESA apply to the same people and have the same criteria - I wonder if they might get rationalised? Hope not! Iâll accept the duplicationâŚ
Just keep in mind Graeme, that if youâre refused entry to the support group (together with uplifting of weekly rate, you get unlimited time on the benefit allowed - 6 months for work group), you need to request a âmandatory reconsiderationâ within one calendar month. (You really need help/a guide for this bit - itâs essential!) If again refused, another month to submit an appeal.
The rules do look straightforward, which gives you a sense of âoh thatâll be a piece of pishâ! But that is not necessarily the case.
I have enough difficulty explaining how I fit the rules for the support group. And Iâm very, very good at understanding benefit regulations and writing forms so as to âhelp the decision maker come to the right decisionâ. But it still takes me ages and I still worry about it until the result arrives.
Sue
The thing to remember - those with genuine health conditions that really mess up with their ability to work tend to think that their limitations are so obvious (as well as having a diagnosis of a serious condition, such as MS) that the benefits system should be straightforward, that it just needs truth and you will be believed.
Often too, to try to mentally cope with their health condition, people tend to understate the problems it causes and prefer to remember their better days rather than their worst. Donât fall into this trap. It catches out so many of the genuinely ill. You have to think rather like a benefit fraudster - to the point of overstating the disability - well, you need to focus on your very worst days, not your good or best days. They seem to deliberately misunderstand how debilitating fatigue is. That you might be able to do a bit before fatigue knocks you out will get interpreted that you can do whatever that activity is, and will find you fit to work. This is why getting advice is so important.
This is partly why I phrase it as âhelp the decision makerâŚâ They canât possibly understand all health conditions, let alone how something like MS affects you - the individual. So itâs not so much overstating, more like completely explaining exactly how MS affects you. Or rather how you live your life given the day to day problems you face.
Personally I donât believe we should explain our âworstâ days. Unless every day is that bad, or youâve explained thatâs how terrible your symptoms can be. This is just in case you are called for a personal assessment (possible!) and youâre having a good (or just less bad) day.
Try to give the assessor a full picture of you and how youâre affected by MS all the time.
Donât forget, the individual assessor didnât write the regulations. Some benefit assessors without doubt are absolute gits, trying to catch you out. As if itâs their money and all claimants are cheats. But most are just ordinary people, doing a job as well and as fairly as possible.
Sue
Itâs not recommended to overstate the extent of oneâs illness or limitations on a form. More important to accurately convey your condition to your doctors - the ones who write the reports. Those reports carry more weight than anything you say yourself.
Yes, those are fair comments. Iâm just aware that many of those with debilitating conditions tend to understate how things affect them, because it is a way of trying to keep positive. They may still be in denial too. It can be hard to shift from the âputting on a brave faceâ mindset to a brutally honest (to themselves) mindset as it can force them to confront things they donât want to be reminded of, because the brave face is a way of coping. Iâve been there, Iâve made that mistake.
Hi thank you for all the comments back. Food for thought. Still seems a rock and a hard place.
Quick update. Got an unfit to work note from the go today. Signed me off until the end of January. Time to reassess.
Hi, well that gives you something thinking time. Take it steady chuck.
Boudsx
I was in a similar situation 18 months ago. Turned out my employer had an Income Protection Insurance scheme so once I had done my 6 months sick, I got put on the scheme. Doesnt pay full salary but my HR dept also advised me to get on to ESA scheme in the contributed category so also now getting the full 114 a week and with PIP as well, taking home the same income whilst sat at home. I know I was lucky with employer having this scheme but before taking medical retirement/redundancy, you need to ask whether you have access to something similar.