hope everyone’s as good as can be expected.

I have a few questions I would really appreciate any help with.

I’m going through the dreaded ESA process (migrating from IB), and have joined the works and benefits website as suggested.

I’m seriously not coping well with this, to the point of being given a weekly script of the anti-anxiety medication Chlopromazine.

I am terrified of what is going to happen to me when my money gets stopped (through failing ESA or waiting for tribunal)

I am already in financial trouble as, after consistantly forgetting to pay my gas and electric bills,

I had to agree my bill money would come off at source, and I now pay £50 a week, (to last over a year), with no option to cancel, (although I was falsley told I could cancel any time pre agreement)

I also forgot to send relevant information to the council and have had my housing benefit stopped twice (apart from nearly burning the house down by leaving cooker on etc etc)

My main health problems are extreme fatigue, bad cognitive issues,

(luckily I have a lot of documentation from Neuro, Doctor and research Doctor supporting this),

also depression, anxiety, and retention/frequent bladder incontinence.

I’m stressed out about a part in the form where it asks how far you can walk without being exhausted.

I don’t know whether to answer as if it’s my worst day or what.

I’m scared that if I exaggerate ( it varies but that gets 0 points.) I’ll have all my benefits stopped, but if I don’t mention it, I’m doing it wrong?

I’ve just seen Urolgy consultant who is recommending self-cathetarisation,

but says the process will take 18 months.

Does this mean that my incontinence issues will be regarded as being sorted?

The Urologist also said an operation might be needed, but I can’t remember why?!

I’m totally freaking out about this, maybe to the point of over-reacting, but I honestly can’t help it, I’m crying and terrified all the time.

My Doctor wont change my anti-depressants as I’m on long waiting list to see Neuro-Psychiatrist

(I asked 6 months or so ago, pre-Neuro-Psychiatrist referral when I started falling apart, but other Doc just said no.)

My niece in England is bi-polar and her PCN nurse is able to delay her ESA interview for a year as it would be detrimental to her health to go through this process just now.

Where are the professionals fighting for us?

It seems to me that our health is judged expressly by how good we can fill a form in* -

(if you know the rules you can play the game) and has little to do with the reality of living with a progressive illness.

We then have to endure unfair questions that do not take the varying problems of MS into account - and lets not forget the fact that your “ATOSSER”

might probably lie at your non-medical medical…

No matter what happens, it’s not going to be ok :

Pass ESA - money problems with MS - do it all again next year

Fail ESA - money problems with MS - (maybe court, plus homelessness), do it all again next year

Pass the pills, please, I’m freaking out

  • Daughter helped write this.

Thank you, bonnie, I appreciate your advice.

Thanks for taking the time to read all that, that was a mission.

Try to stop panicing it wont help but taking some practical action will help you get things under control. Cut down what you have to do in chunks, what is priority? What can wait until tomorrow? Next week? That way it will become manageable.

I am glad that you have your daughter to help you. I would suggest that you get some help to deal with the ESA claim. Places to start are the Citizens Advice Bureau, local council might have a benefits adviser, or your GPs surgery may well have someone who could help. I noticed on my last visit the surgery had someone there who could provide benefits advice. All would be worth a call. Put as much detail on your form as you can and dont forget to provide evidence. With regard to MS make sure that you put down that MS is a variable condition and difficult to predict and live with.

With regard to forgetting things, try to write them down. Keep a diary, can be just a notebook with the date on the top of the page. Keep a to do list. Get a box files where you can keep all your papers together, an alphabetical expanding file is great. Get someone to take a copy of any forms that you send off. Try keeping a notebook by the phone, names, dates, who is going to ring who and and when. Citizens Advice should also be able to help you get your debts in order.

Perhaps you could contact your local MS group? They could have someone who could advise or offer practical help. Make sure that you have someone with you when you go to the GP and of course if you go to any other meetings. Be persistent if you need help.

Good luck and best wishes.

I am still waiting for the ESA questionaire,I have rang the benefits agency at least three times requesting the darn thing.

I am still waiting.

You also could of asked for a home visit when you had the initial phone call from the benefits agency for the medical from a health care professional who is proberly not trained in the illness of MS and aint got a clue about it.

BUT a home visit is down to the health care professional and if they think you warrant one or not.

Who is this healthcare professional?The secatary of clerks at the townhall or what?

I am NOT going to lie when I get the questionaire nore will I lie to the healthcare professional.It is clear that I am struggling and suffering.My own doctors have even told me make the best of the rare good days you have.They know I am realy unwell and are NOT happy with the treatment I have been getting from those who are supposed to help us.

Your not alone with your struggles there are many of us out there with allsorts of disabilities who are loosing there benefits.

I dare not even apply as I am so worried I will be turned down. I’m a coper and outwardly I probably do a good job of looking “normal”. Its very hard to explain it takes 3 times a much effort as it does anyone else. The pushchair is a necessity when walking any distance, normal things that parents are supposed to do don’t get done and work is not in the equation at all at the minute (I’m undergoing disciplinary proceedings to be dismissed on capabiltiy grounds). Perhaps that the way to cut the benefit bill! Although I’ve been reading a book (fiction) called Boomsday about the suggestion that to ease the benefits bill all people shoud commit suicide at age 70 and thinking are we really so far from that now!

Although your post is about ESA I am going to talk about your gas/electricity first. What you owe is called a priority debt and as such should be paid before other debts like credit cards but £50.00 a week is ridiculous. Does that £50.00 include current usage with a bit off your arrears? The minimum payment per week for utilities arrears is £3.95. (Which could be x2 for both gas and electricity) If you are paying much more than that you need to see a CAB advisor who will negotiate a better deal for you.

When something frightens or worries me I try to think what I would do under the worst-case scenario. It makes it easier to cope somehow. Your worst case scenario is that you wouldn’t qualify for ESA but this does not mean that you would be left without any income at all. You would have to apply for JSA. Or if you are waiting for tribunal you can continue getting payments at the reduced assessment rate so you would not be without money.

Now tackling the form. It’s a mammoth undertaking ad I would suggest doing it a bit at a time with the Benefits and Work guide to hand.
If your condition varies you can answer as though it was your worst day but say how often this situation exists. (How many days in a week for example) If you just tick “It varies” without any explanation you would probably get 0 points. I wouldn’t advise answering anything by just ticking boxes. Everything requires a sentence or 2 unless your answer is “no”

As for incontinence issues. You are filling the form in about your condition as it exists now not how it might be in 18 months. I know what you mean though. It’s almost as if we are penalized for getting treatment. My continence issues are significantly worse without medication but if I have to choose between peeing myself and having a good answer for the form or taking my medication and living a much more normal life it’s a no brainer.