I'm a newbie - help appreciated !

Hi I'm after some advice .

A few days ago I was diagnosed with CFS by a consultant at a CFS clinic. I'm waiting for a letter confirming my diagnosis .

My consultant has advised I reduce my working hours ASAP.

I'm currently on my 5th week of sickness from work . It's not going to be financially viable for me to reduce my working hours but I also know that the hours I do are going to be unattainable.

I also have young children so it's not a case of being able to work and rest . It's work , more work , rest at normal bed time .

Sometimes , I'm so tired I can't even speak - I can manage a grunt !

How do people cope financially?

I've heard PIP is nigh on impossible to get with CFS .

I can't qualify for tax credits - even though the HMRC websites say they class someone as disabled if they can't work an 8 hour day , 5 days per week...

BUT to tick the disability box , you have to be in receipt of other disability benefits - which I can't get !

It's a vicious circle : what do I do ?

 

Hi,

You can apply for ESA which is the benefit for those who are too ill to work (you can still work a certain number of hours and claim it.) Your doctor will be able to write you a sick note as evidence that you are ill but you will have to have a work capability assessment at some point. I was actually really pleasantly surprised because I was dreading the assessment but the nurse who assessed me was the best medical professional I've ever had with regards to ME/CFS. However, I know this isn't always the case and, sadly, often people have to appeal bad decisions.

 

I've been on DLA for years, as have many ME patients. Whether PIP is any harder to get is debatable: early figures suggest that more people are getting it overall (possibly due to the new rules over aids that the government is now trying to scrap), though these are probably smaller awards - higher rate mobility is notably harder to get all round now.

In general, ME patients seem to find it easier to get disability benefits than they did 15 years ago, at which point (if I remember my stats correctly) 2/3rds were rejected first time over but 95% who appealed won. After the brief spell of carnage with ESA at the turn of the decade, that benefit is much easier to get than it was and I remember an ME Association survey that found that the numbers getting it were pretty standard compared with other illnesses (though I imagine a few more go to appeal than is standard).

There is a lot of fluff that floats around about disability benefits on the internet, the better to pad out angry Twitter memes but notably low on facts. The reality is a well filled out form (the ME Association guidelines are cheap and very useful) and support from your doctor will probably go a long way. However, it's also true that there are plenty of people who deserve benefit who get rejected, and more who end up on "work related activity" who are in no position to find a job any time soon. Be prepared to appeal if you don't think justice has been done.

If you want to apply for ESA though, do it quickly - "reform" is on the horizon, which seems to mean taking another ill-fated pass at forcing the long term sick onto the dole, and the worst will undoubtably be borne by new claimants from next year onwards.

 

Thank you both for the replies .

I've had a look at ESA and I definately do not qualify for that - even with a reduction in hours .

I might be able to claim PIP but again, it's the application - there doesn't seem to be any scope for fluctuating symptoms .

It's more "can you dress yourself " - well yes I can ... But there's no scope in the question to say - BUT after getting dressed , I'm so tired it was a pointless exercise !

 

You have to be able to do something "reliably, repeatedly, safely and in a timely manner" to be judged not eligible . If you can do it but it makes you ill, it's worth applying. I can do plenty of things if I want to destroy my health.

 

I guess these benefits aren't supposed to be easy, but at times it does seem to be unnecessarily difficult. I claimed Incapacity Benefit and ESA support group successfully over many years. I had to attend medicals twice for IB, but when they switched the system, I claimed ESA without attending any interviews. But that won't be the case for a new claimant. See if you can get help filling out the forms. Do a practice run on a copy or using the electronic version of the forms where they are available. I still claim DLA and that has always been paper forms, but I have a photocopier so I made a copy for a trial run. Some of these forms are of monstrous size, 40 or 60 pages which is horrendous when you have brain fog or concentration problems, or simply don't have enough time with your responsibilities. Everyone here will empathise with your position.

I would second the recommendation to get the MEA advice sheets. You have to pay a modest amount for them butI think it is worth it. Have a look around the web and see what other advice you can find. It doesn't hurt to see different perspectives. Do expect to spend quite a lot of time on these forms. It is well worth making the time available. Despite all the warnings, if your illness qualifies you (I will assume that it does and I am not in any position to judge that anyhow), people to get benefit awards at the first attempt.

Do concentrate on describing what you can and cannot do, and what your problems are. Leave discussion of you medical diagnosis to the relevant page. Writing "I have got ME" as a description of your difficulties won't help. You do not need to discuss the diagnosis in the boxes where you describe you illness. The name of the illness is not relevant at that point. Discuss in some detail your problem as it affects you personally - don't attempt to copy someone else's claim form. They will expect you to be honest about good days and bad days. Be honest with yourself too how much it does affect you. Give them the details. For questions like how far you can walk, be careful to describe whether you can do it repeatedly or not and how it affects you afterwards. Be clear what you can do without ill effect and be clear about repeatability. All the questions about which activities you can do, imagine doing these in a work environment and consider whether you can do it in the environment over the course of the working day and how quickly it makes you ill. The form is to establish whether you can work, so discuss what it is that makes you unable to work.

It is a horrible thing to do these forms and the first time I did the IB forms it was quite a shock to me when I really thought about it and realised just how disabled I was. That was pretty demoralising. However you do need to give it priority, and fill the forms carefully and completely.

I wish you the best with these things. We are all holding your hand, metaphorically speaking.

 

Are you sure? When I did those forms there were boxes for you to explain in further detail. Whenever there is a box for you to explain, fill the box, explain the problems. Also read the questions carefully. Read carefully if the questions are qualified as being without severe discomfort or some similar wording and think to what extent that applies to you. If dressing leaves you in pain, say so. For each question, if it was the case that I could not do it repeatedly, I wrote that in the extra information box. My answers were very repetitive. If it causes pain, say so, if it exhausts, say so. If it leaves you muddle-headed, say so. Say so in every box where it is applicable.

 

thank you again for the replies . I'm going to apply once I get all the diagnosis paperwork back from my consultant .

I've heard these claims can take weeks so in the meantime I'm going to return to my normal working hours and pray that I don't have another crash !

Thank you all for the support .