Long term illness

1511claire77

I'm 34 and have just been diagnosed with M.E/CFS and I'm stuck in bed most days. I'm not sure I'll ever be well enough to return to work, and I'm about to go into half pay, before it would become SSP. I am already well into my overdraft, I am separated and have to support myself and all I keep hearing from other sufferers is that they are being refused benefits and are being deemed fit for work! There is nothing I would love more than to be fit for work and I cry about that every other day as I know I am physically not capable - but I don't know how I'm going to afford to live. I'm in a state as it is, I can't imagine losing my home! Anyone have any advice?

DomRavioli

Make an appointment at your local CAB. They will be able to define your circumstances, and also how welfare or other boards may see your circumstances as well as any help available.

1511claire77

Thanks - someone via CAB is ringing me Tuesday, but some people have said they're not very helpful so I'll see how I get on and take it from there

clare0305_2

you should look at the ME association website. There's some info on there that may help you and they got a helpline.

LadyMorticia

Hey Claire.:wave: I also have M.E and I'm incredibly unwell at the moment. It can get better though. You may not be fully cured but hopefully in the future you'll be able to hold down a job again, even if it's only part time. Definitely speak to CAB. I spoke to a CAB adviser the other month and she was lovely and really helped me.

I agree with Clare that the M.E Association is also a good place to start. x

rogerblack

You can - in principle - claim ESA and DLA for ME/CFS.

I'm currently on ESA (WRAG), and am awaiting my appeal for DLA on the 25th.

In short, the arguments for ESA are that you cannot 'repeatably and reliably throughout the day' do an activity.
The guidance explicitly says 'if you can do something only once, you should be treated as not being able to do it'.
This applies to everything from 'mobilising 100m', to 'learning sequential actions' - you can't be said to have learned the task, if you cannot perform it most of the time, due to being exhausted in bed.

For DLA, if you can't reliably cook a meal from ingredients (through poor coordination, planning, fatigue, ... making it dangerous), then you're eligible for low-rate care.
If you require help throughout the day for more than about an hour total (even if you currently don't get it), then mid-rate care.

Low-rate mobility if you most of the time can't find your way on unfamiliar routes without help.
High-rate mobility if you can't most of the time walk more than 30m out of doors.

(there are simplifications in the above)

Council tax benefit, and/or housing benefit may be payable if your income is low enough, and will be once you're on ESA.

What's the status of the house, and were you continuously employed for the last several years?

NEH

From one sufferer to another I'd second all the suggestions on here....

I've also used the Disability Benefits Helpline in the past but I'm not sure what they're like now but at least they used to be able to give advice over the phone......

http://www.direct.gov.uk/en/Dl1/Directories/DG_10011169

It's truly an awful thing and there won't be much I can say that'll make it better, but I feel your distress I really do....:(

BigAunty

You can get a better handle on your financial circumstances if you do the following

Understand how much you may get on benefits via the Turn2us online benefit calculator.

If you are in rented or owned property, have a look at the advice on the Shelter website how to avoid and deal with rent or mortgage arrears. Let the forum members know if you are an owner or renter and if you live with others.

Download the budget planner on the MSE website and accurately work out your current budget. Go through the site and identify where you can make savings, anything from changing tariffs with energy/telecoms/insurance providers through to cheap recipes, how to up your income, how to be ultra thrifty and frugal.

Go to the debt free wanabee board and they'll help you construct a SOA (statement of affairs? accounts?) and help you to reduce your expenses and will give you advice how to tackle your debt (overdraft).

It's great that you are aware of the risks that comes with a sudden drop in income but not so great that you assume it will lead to a lifetime of poverty and homelessness. I think once you get a full handle on your income and expenses, debt options, perhaps future accommodation options, you'll feel more in control. And yes, the majority of people applying for ESA do not get it but it doesn't mean that you won't, or you won't get better, so try not to wind yourself up at this early stage.

1511claire77

Thanks for all the helpful advice. I have a mortgage on the property (it's a one bed flat) and I live alone. Separated. I'm only paying interest on it currently to keep costs down. I have worked full time since I left school. Really do want to be well enough to work but I'm just not and feel like Im getting worse right now. And now they are taking the decision from GPs to determine who should be deemed fit for work. What if they say I should be working and I get refused benefits! I'm only saying this as I know what the general opinion is about M.E being an " imaginary illness". If only they knew.. Just don't know how they can stand back and let genuine people who have worked hard all their lives suffer when they need help and there are others out there scamming the system. So unfair.

Morglin

The trouble with contacting Social Services, at the moment, is that they take ages to actually do anything, as their resources are so low.

Meanwhile, OP, as well as talking to the CAB, try googling up 'Welfare Rights in........ (your area)'.

Some areas are better than others with how many welfae rights services they offer - but, if you can get one, they are often more able to help with individual cases than the CAB.

Make sure your GP/consultants etc., are aware you will be claiming ESA and DLA, what your problems are, and ensure they will support you in this -it's an uphill struggle without their support.

If you are ok with paying approx £20 per year, this site does provide excellent downloadable guides for claming ESA and DLA, with step by step criteria explanation, along with forum advice from those who understand the system:

http://www.benefitsandwork.co.uk/home

For more general info, this free site is good:

http://www.benefitsnow.co.uk/

SHELTER give phone advice on keeping your home:

http://england.shelter.org.uk/get_advice/paying_for_a_home

The ME society give benefit help and advice:

http://www.actionforme.org.uk/get-informed/welfare-benefits?gclid=CMyv9LCGx6wCFQVTfAodEwjbpA

Good luck with it all.

Lin

NEH

I personally wouldn't pay £20 for guides to claim as most of the charities do them for free or a smaller fee than that.....;)

I would also google ME forums as talking to other people with this condition does sometimes help. Twitter is also a good place for this and for finding out about things if you know how to use it.