What I have great difficulty in understanding is why people continue to work when they say they’re really struggling with MS. If you can go out and do a days work then your MS is quite mild. All the nonsense that I need the money is just nonsense. Financially, with benefits, you can cope. You just need to do your research. My point is, look after number one and stop making excuses.

Thing is Scudg the benefits system is a bloody minefield.

I still work, I’ve cut my hours but when I go back in August after being furloughed I know it’s going to be harder as I’ve got worse over the last 6 months.

We haven’t even applied for my wife to be my carer as she would need to drop so many hours to be eligible that it’s just a joke claiming for the carers allowance.

Theres a disability insurance scheme with my company, so if I was finished on ill health, I would firstly need to go on the sick for a period no less than 6 months without a break, my company sick pay is 60% pay and lasts 12 weeks, after that its nothing only SSP, then I see works GP, who may or may not pension me off, if he did I then get 66% of my salary, however, this would include my current PIP !

Apparently if someone is pensioned off on ill health the income you receive from benefits and your company disability salary must not exceed 66% of the salary that you would of earned if still working.

Its possible that this is just my companies on policy, I’m not sure.

Another thing is if I was finished on ill health would the disability scheme payments from my company effect any other benefits that I could claim, my guess it probably would ?

Like I said it’s a mine field.

I do know people on benefits who, and I’ve no qualms in saying this, are playing the system to their full advantage.

I was talking to a chap a few weeks ago who used to work with me around 7 years ago, I was his foreman, we were both made redundant at the same time, I went straight into my current job, he’s not worked since, he’s become his girlfriends carer, she has epilepsy, she claims PIP at the highest rate, she’s also his carer as he apparently has mental issues that stop him going out, at the time I was talking to him he was buying a paper and a 12 pack of Strongbow in our local newsagents.

He told me straight as he was lighting a fag and cracking open a can of Strongbow " whats the point in working, I’m better off not working, we just lay it on a bit when being assessed".

Nice eh !!!

oh, they also get their rent & council tax paid, thats another thing disabled people in rented accommodation are in a totally different situation to people with mortgages, unless I’m wrong I cant think of any benefit that will pay my mortgage & council tax ?

It’s not always about money though when someone with a disability carries on working, yes it’s nice to have a wage, but sometimes it also helps to have a positive attitude rather sitting in the house sucking up benefits .


it takes skill in form filling and as was said “lay it on a bit” etc but the carer thing gets me - i have heard of couples getting carers allowance for each other…if you need a carer, how can you care for someone else - I still work and I’m thankful for that but to apply for carers allowance for me, i feel would be a bit of a fraud as, thankfully, I can still manage & not everyone is the same.


During my 60 years, I’ve learnt that everything comes down to money. As for work, my own health is more important than someone elses wealth. Yes, the benefits system is a minefield but I would rather devote my time to what I’m entitled to as it requires a lot of effort. Not really interested in what other people are doing. I’m a great believer in Karma.

Its a difficult 1, I tried to carry on with work, but just couldn’t manage, which really PI**ED me off, but I had to do it for me, I went straight in at SPMS, so not great from the very beginning, but I can understand why some either want to continue, or have too, we were mortgage free in our 40’s, so very lucky and my husband was in a good paid job, so for us a bit easier, but 5yrs ago my husband took early retirement to be my full time carer, what a pittance people get for that, anyway I feel we’re in a lucky place, financially speaking, some aren’t. What gets to me is this, when my husband starts getting state pension in 3yrs time, the carer’s allowance stops, this makes me bloody cross.

Jean x

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Like you, it totally amazes me how someone can care for a person and that person is then the carer for carer. It’s laughable.

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A chap once said to me in work, not that long ago, that if he had MS he would be “milking it” !

Sorry but I certainly wont be using my MS just to “milk” the system.

If Karma is a real thing, I cant think of anything I’ve ever done so bad that MS is the payback, however “milking” the MS to obtain more benefits might certainly have a negative Karma payback that will come back to bite you on the arse

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I get what people say about being carers for each other…but there are genuine situations where this is feasible as long as the caring duties don’t cross with what the reported difficulties are. For example if someone with MS is claiming for largely physical issues and has someone caring by means of doing stuff for them like helping them to wash and dress, maybe physically helping them with eating…and the carer is claiming for needing prompting and supervision for things because of say autism , then the person with physical difficulties could reasonably be providing that support by explaining, reminding, clarifying and so on.

I don’t claim anything by the way! It’s just a hypothetical example

I’d be very surprised for anyone to be able to milk the benefits system these days. To get what you are entitled to is water tight. Plus, if you don’t ask you don’t get. So for many, I would say that they are going short. I have found the most helpful people to be CAB although you still need to ask them the correct questions to steer them in the right direction. As this is usually a long winded process the reality is, there isn’t any time to go to work.

I know of people milking the system.

I know of people laying it on when being assessed.

There ARE people out there who know how to play the system, its a fact.

Another example I know of is a colleague at work, whom I’ve know since childhood, his wife claims some sort of benefit, which I think he told me is PIP but I’m not exactly sure which benefit it is, she claims she has severe Agoraphobia, so severe that she cannot venture outside at all, the husband claims carers allowance, but on paper he don’t live with her, as they’ve “split up”, (yeah right) !!!

Right now as I write this both the husband and wife are waiting to hear from the travel agent to see if their 2 week annual holiday to Benidorm is still going ahead due to the Covid outbreak, not bad eh, seeing as she cant venture outside at all !!

This same couple moved out of their own home and into into a council flat a few years ago just across the road from their own house which they rent out to the daughter, at the time of moving into the flat the wife declared she had been kicked out of the home, hence getting the council flat, it was a load of nonsense as they are both living in the flat, I actually pick the husband up sometimes for work.

The wife has the rent paid by the social, as she dont work due to her “disability” and she’s “on her own”. LOL !

The daughter also states she is single with 2 kids (not really single but it looks better when claiming benefits), she also has the rent paid by the social, which goes straight into the pocket of the step dad living across the road.

So we have a whole family having their rents paid by the social, purely by the wives not being able to work (LOL) and saying they are living by themselves (LOL).

One of the houses is owned by the husband who rents it out to the step daughter (rent paid by social), and he’s living in a flat that he’s not supposed to be in which is also having the rent paid by the social.

Like he says, happy days, ching ching all round £££££££ !!!

Then theres the wife who dare not go outside as she will go into a mental melt down due to her “severe” Agoraphobia, but yet she’s absolutely fine to get to an airport, spend 2 hours on a plane and then p*ss it up in Benidorm for a fortnight.

Things like this are happening all over the country every day .

Milking the benefits system is a past time for some people.

What a minefield of a topic this is.

All these stories of people milking the benefit system. I know someone who did that for years and now they are very ill. Karma worked then!

I have been disabled and very dependent on others for about 90% of things.

When I had to transfer from DLA to PIP, I worried and worried for months. I did get the right result, but it was very upsetting…having to justify why I cant walk, stand, use the toilet etc.

I worked for the LA and got a good payout, but I would have preferred to stay in a job I loved.



100% agree Boudica.

Totally agree, I would rather be working. I sometimes get very sad when I think about work and not being able to do what I loved doing. Don’t get me wrong, I do appreciate having my benefits. I can’t help looking back over the years and some of the things I was able to do. No point in looking back, I can’t really complain, I’ve got good support from my partner and family but I do understand why people try to keep their jobs, It’s not only for the financial gain, it’s to feel a sense of themselves. Good luck Jactac on your return to work



I concur

You can find “understanding and lived experience” by the bucket load on this site.

You’ll also find threads where a member might feel they have a bit of a gripe to get off their chest, such perhaps as this thread might be, but hey, that’s what free speech is all about.

Basically if a particular thread does not sit peacefully with you, theres a couple of options open to you.

You can ignore it and move on to another thread, you can also, if you feel the need have your input and join in, or you just look at other forums that might be better suited to you.

Its a simple case of “take it or leave it”.

I think this is an excellent site and over the years many people have benefited from it.

Hear hear cracowian.


I think those of us on here and there are plenty would much rather be working than having to claim benefits, I didn’t even know I could do it until my MS nurse mentioned it, that was about 6/7 mths after I was diagnosed. Its a shame some people scam the system, that’s why those of us who should get it, have to jump through hoops (if only) like you said Bouds about pip, I too was worried sick about transferring and yes it went the right way, but we shouldn’t have to do it.

Jean x

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Havent worked since 35 years old and I HATE it. I detest not having my own money and I detest seeing my husband go every day to work to pay our bills and mortgage, previously both paying everything. Been with my husband almost 23 years, it’s our 17th wedding anniversary next week- he didnt sign up to pulling me, transferring me, dressing me etc, he signed up to the good time girl that would always be the first on the dance floor!!


Hi Charl, mine didnt sign up to me being so dependent either.

I hate being like this. I`m 67 now and kind of dread living well into old age.

It`s a chuff is what it is… right fair!


You must have your own money through benefits?

You must get discounts on household bills as well?

If you don`t you should look into it as it will be back dated as well.