The first thing to bear in mind is that any advice will be neither positive or negative. It will simply be what the rules say.

Many of your questions will be down to the specifics of your condition and how a Decision Maker will view them (according to the rules)

You can find the DM rules online and interpret them yourself but they are quite complex.

As a start you might want to use one of the benefit checkers to see what your entitlement may be, based on the conditions you have.

Here is the link to some choices

https://www.gov.uk/benefits-calculators

You have a lot a questions which will have different options so it may even be better for you to see a local charity who can guide you through some of the questions to concentrate on the important ones (to you)

If your PIP includes a Daily Living component then your husband can say they are caring for you and any UC award will include an additional £120/month for this. He doesn't;t need to claim Carer's Allowance for this to happen. As a carer he will have no work requirements and will therefore not be expected to increase his hours etc.

You need to have a Fit Note from your GP which you can give DWP when you claim. You will then have to go through a Work capability assessment. While this is going on your work coach is likely to relax work search requirements for you (but it is at their discretion). What happens after the WCA is complete depends on the outcome.

If you claim UC your Tax Credits will end. I recommend that, if possible, you get an advice agency to do a benefits check so that you can compare UC entitlement with ongoing Tax Credits. If you rent your home and want help with rent you will only be able to get this through UC.

You don't say how old your children are. This can affect the number of hours you are expected to look for work even if in the full work search group.

Thank you both for your responses .

I didn’t realise a fit note would help “prove” I’m ill under universal credit . I can certainly book an appointment with my GP to ask for one.

How would this work though? I don’t think the GP would (understandably) give me an indefinite fit note - would I have to ask for so many months and then go back to keep supplying these to universal credit?

My main worry is “proving” I’m ill. After the fight I had for PIP it’s so deflating .

I do hope to work at some point in the future , I just need time to see if I can recover. This disease robs you of everything.

I’m hoping to use the time (if I can get in the correct group) to study at a very reduced timetable . Would this be allowed under universal credit ?

My children are primary school aged but the child with SEN does not go to childcare as he doesn’t cope . School holidays will be a problem for us if I’m forced to find work .

I’ve done a calculation on the entitled to site and it appears we are slightly worse off under universal credit , but that’s the way it is .

How do universal credit take in to account “relevant” carers? If I were to be put down as my sons main carer, and my husband as relevant carer , would he then be asked to increase his hours?

(I rely on him a lot for care for both of us as when fatigue hits , I can barely string a sentence together!)

I really appreciate the advice

A fit note doesn't prove you're ill or that you have limited capability for work. It's the discretion of you work coach, until you're assessed and the decision is made.


There's no such thing as an indefinite fit note. You will need to keep sending them until the decisions been made on the LCW.

Oh I understand now . I could ask my GP for a fit note to cover me whilst the assessment takes place ?

I know that I may still be required to search for work depending on my job search . Are these assessments done reasonably quickly or am I looking at the length of time it takes for PIP?

Can you appeal or go to tribunal if you’re put in to a group you don’t agree with ?

Sorry for all the questions . I’m trying to get my head around it all.

As has been advised, you will need a fit note to start the LCW process off and you will need to continue to send them until the decisions been made on the work capability assessment.



There's no timescales for any decision, it depends on backlog. If you disagree with the decision then yes you can request the MR followed by Tribunal.

Ok that makes sense, thank you.

Don't be scared of the name itself. "Universal Credit" does not just mean "must work full time". It might help to just think of it as the name of the system that handles the payments.

It can be a pain to prove limited capacity for work and I understand the fear there, but there is a lot of peer support available on these boards to help you get what you're entitled to. I would encourage you not to give up hope, and even if UC don't give the correct decisions to you immediately, there are ways to fight them and the people nearly always win.

Have you seen the MEA's leaflets about claiming benefits -
www.meassociation.org.uk/shop/benefits-leaflets/

Sorry if I have missed something, but if you are already in receipt of working and child tax credits, why will you be claiming universal credits?

Certain new or changed claims require you to move over to UC.

A personal experience here, with the usual disclaimer that of course it's no guarantee you'll have a similar experience and of course our situations are not the same, but:

I lost my job last year on the grounds of ill health after being off for 9 months due to ME/CFS, had to apply for UC* and apart from work messing up my notice period pay and having to fight for my first UC payment, it's been fine so far.

My work coach is brilliant, only calling me in when absolutely necessary - i.e. to hand in a new fit note, every 3 months so far, and turned off all work-related requirements. The only thing I have to do is check my online journal, and attend those bare minimum appointments. They're usually about 5 mins long (though I was assigned to a Jobcentre 45 mins away due to our postcode, despite having two closer - however because I only have to go occasionally and I have such a good work coach it wasn't worth trying to plead for going to one closer).

The UC50 form applying for LCW/RA was in the same vein as a PIP form (but obviously with different criteria and descriptors). I've just had my face-to-face assessment this morning where I was so exhausted by having to sit waiting I ended up in tears before I even got in to the appointment; the assessor told me several times that if the DWP had read my form they shouldn't have called me in and that she was curtailing it because I was evidently very unwell and that it was inappropriate I was even there, let alone to have a full-length assessment.

Of course, I have heard stories of assessors being really nice and then writing all sorts of rubbish on the report, so I'm not rejoicing just yet - however if I don't get the right decision, at least it will have been without having to waste an hour struggling to string sentences together, not explaining myself properly, making me feel even more rubbish than I already was. (Does that make any sense?)

*actually my NI record was intact so I may have been eligible for new-style ESA at the time, but I didn't think I had any kind of NI record until I checked a few weeks ago - it was treated as paid as I earned enough for that, but not enough to actually pay.


For you, ultimately they have to make reasonable adjustments for your disability, whatever those adjustments might be. If you are found fit for work and have to appeal, in the meantime they still have an obligation to make those reasonable adjustments.

The guidance is that work coaches have discretion to accommodate individual circumstances too.

Does your child with SEN receive DLA?

As for studying part time (something like OU I guess?) I don't think it would be a problem as long as it doesn't contradict the reasons for applying for LCW/RA. So if you were studying all day every day for a few weeks but put in your form/application that you couldn't ever concentrate or learn new things, that would certainly be investigated. However, if the majority of the time you can't concentrate or learn and you truthfully explain that *and* how you are the rest of the time, and you use the small bursts of brainpower you have for the minority of the time in order to study, that would not be a contradiction.

Thank you all so much for all of the advice. I’m feeling a lot more positive about it now . Even if I have to fight for it , I’ll hopefully get there in the end .

No, not for everyone. It will depend on what the change of circumstances are.

As suggested previously please get a benefits check done before making a claim for UC. One thing that has not been mentioned yet is that if you have sufficient NI contributions between April 2017 and March 2019 you could claim new style ESA. Unlike UC this would not end your existing Tax Credits claim.

Well I didn't say everyone. I said certain claims! Sheesh

The turn2us website benefits checker is worth exploring.

The MEassociation, Action for ME and a coupe of the other charities also have guides that can help. The latter had a phone line for benefits.

The MS society (although not your condition) has some great leaflets too that are free.

Look for local facebook groups, support groups etc.

Good luck with it all