To think WTF am I going to do now? (Benefit related)

[worriedaboutthefurure]

I’ve nc for this.

I left my job earlier this year as I was too ill to work. The doctor thinks I have fibromyalgia or it could even be ms but I’m still undergoing tests.

I absolutely cannot work. I’m in so much pain I could cry. I can’t sleep. I can’t control my bladder. I am anxious, depressed and my whole body hurts. I fall asleep at tea time, then sleep all night, apart from going to the toilet.

I’ve been claiming ESA. I had an assessment this week and they called me today to say I scored no points and they’re withdrawing the benefit straight away. I can appeal, but not until I get the letter.

How can they think I can work? I thought the assessment had gone well, as in I presented my symptoms and how they affected me.

I’m not sure how else I can convince them? This has made me even more anxious, that exasperating my symptoms. I’ve worked full time my whole life, I’m 51. I thought benefits were there to help people that find themselves in this horrible position.

I just don’t know what to do. Has anyone been in this situation and successfully appealed?

Thanks for listening.

If the decision you need to ask for a Mandatory Reconsideration. This will give you the opportunity to present any further evidence and supporting documents from your GP/consultant.
If it is reviewed and allowed benefit will be reinstated
If not it can go to appeal and you can possibly be paid benefit at assessment rate (basic benefit)

In the meantime it is suggested you make a claim for JSA- after an ESA disallowance the claim needs to be made by phone- it cannot be made online, its called a transition claim and can be made by calling 0800 0556688

Do you have any medical notes you could supply to aid your appeal?

Have you applied for PIP?

Apply for PIP, ask for a mandatory reconsideration for ESA and put in a claim for JSA.

Citizens advice can help with doing appeals for ESA and help with filling in the forms for PIP.

Thanks everyone. I haven’t applied for PIP as I didn’t think I would get it.

I suppose I just really didn’t expect this to happen. The assessment was horrible. The lady just typed frantically asked loads of questions that didn’t seem applicable. Like, “Do you buy your own incontinence pads?”

I will ask for mandatory reconsideration when I get the letter. Just, in the meantime. No money!

I would suggest that you find a relevant support group for fibro or other possible cause and ask for help there. Many disability/illness groups now are very experienced in the hell which is ESA/PIP and can provide practical advice and even a companion to attend assessments with you.

Navigating the system is the trick, medical evidence sadly is not enough.

The pads question is quite galling.
Unfathomably if you are able to change the pad yourself you are classed as it not being a problem.

If you are undergoing tests at the hospital then there is something wrong with you and the ESA decision is wrong. They dont do tests on fit healthy people. They cant. there isnt anything to test for.
A high percentage of appeals are successful, they just try it on. Its an additional burden forcing you to appeal and they hope you'll just quietly go away.

Google for your local Law Centre if you think you need extra help.
www.independent.co.uk/news/uk/politics/dwp-fit-to-work-esa-appeal-tribunal-a6923066.html

Also suggest you record wny further interviews. I heard someone interviewed on the radio this week whose r3port contrained things he was supposed to have said and he could prove that he hadn't. Desperately trying to think when it was so I can find a link for you.

The whole system seems to be a huge cock up.

Do NOT record further interviews unless you know and understand the strict rules re this. You need a twin tape recorder of a specific type. If covert recording is discovered they can stop the claim. Better to take someone with you who takes accurate notes.

Did you get a letter from your GP for ESA? My partner gets ESA for us due to ‘stress’ and has to provide proof in the form of a Doctors sick note that allows us to access the money for so many weeks. Then he gets another sick note so we get money again. It’s a faff but the only way to get it. We are switching to carers soon though.

You need a twin tape recorder of a specific type

Yes and this restriction is particularly nasty as the only approved devices are old and difficult to get. If anyone doubted the intent behind the new disability support, this kind of decision is a good example.

I know lots of people who appealed successfully. You should definitely try. It’s no fun at all but anecdotally you’re likely to win.

I do get the sick note, but obviously that’s not enough. Sorry for lack of reply, in bed as not feeling so well. Will read all replies in the morning.

The ESA criteria is sneaky. The questions are scored, and there are descriptors for each question. You have to get 12 points in total for the work related activity group, and score in any of about 14 questions for the support group.
For the incontinence criteria it is sneaky:
Limited Capability for work:
Activity 9: Absence or loss of control leading to extensive evacuation of the bowel and/or bladder, other than enuresis (bed-wetting) despite the presence of any aids or adaptations normally used

Descriptor:
(a) At least once a month experiences:
(i) loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or (ii) substantial leakage of the contents of a collecting device sufficient to require cleaning and a change in clothing.
15 Points
(b) At risk of loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder, sufficient to require cleaning and a change in clothing, if not able to reach a toilet quickly.
6 Points
(c) None of the above apply.
0 Points

Support Group:

1. Absence or loss of control whilst conscious leading to extensive evacuation of the bowel and/or bladder, other than enuresis (bed-wetting), despite the wearing or use of any aids or adaptations which are normally, or could reasonably be, worn or used.

At least once a week experiences (i) loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or (ii) substantial leakage of the contents of a collecting device; sufficient to require cleaning and a change in clothing.

So if you told the lady that you leak urine and have to wear incontinence pads, which you buy yourself, to prevent having to change your clothes, then you will have scored 0 points because the incontinence pads 'fix' the problem.

Thanks everyone. I guess I was a little naive. I thought presenting my problems as they were would be enough.

I’ll speak to my doctor ASAP. She’s been wonderful in supporting me thus far, so I’m sure she will provide any documentation I need. Then I’ll ask for mandatory reconsideration when the letter arrives.

I can’t see why I should apply for job seekers. I’m not looking for a job as I’m not able to work!

Been there. Sorry you're having to go through this.

Mandatory reconsideration first, but if they gave you no points at all it's not likely to get you an award. Sorry. It's just a hoop you have to go through on the way.

When mandatory reconsideration is done, apply for a tribunal. 65% of ESA tribunals result in an award being made, and backdated.

You will need to be exact about what points you should have been given, so get the list of criteria and go through it.

When you do the tribunal paperwork, be absolutely specific about what points you should be awarded and why. Use the wording from the criteria. Any medical supporting letters should do the same. Don't be shy about asking your med people to be very specific and to use the criteria language. I asked my gp to write about a form they had completed for the DWP that neglected to mention my pain - this was very important evidence but the gp hadn't any way to know what they needed to mention to support my claim until I told them the criteria.

You may also be asked to be very specific about why the assessment decision was wrong on specific points decisions. They will give you a copy of the decision, so go through it and challenge every bit that is wrong where it affects points you should have been given.

Tell your MP you are doing this and ask for their support.

It's not your fault. I was stunned when my ESA was stopped after assessment. The tribunal came out with me way past the points needed, with clear evidence of misreporting of the assessment by the agency that carried it out.

My main advice is to stick to the points criteria, and don't give up on the way to tribunal. They send you stacks and stacks of paper, and it's easy to get overwhelmed and give up.

Applying for jobseekers is a bit sticky as you have to sign a declaration that you are fit for work. I'm not sure whether this impacts on any appeals process, because I didn't do it. It had entrapment written all over it and luckily we had enough to get by on while we waited for tribunal.

If you are undergoing tests at the hospital then there is something wrong with you and the ESA decision is wrong.

That's not how ESA works. The DWP aren't saying that OP isn't ill, they're saying that she can carry out a range of activities well enough to do some sort of work.

OP, did you explain on your medical questionnaire precisely how your illness affects your ability to do each activity? It's never enough to just tick the boxes, I'm afraid. Bear in mind that if your FM means that you can't do something repeatedly, reliably, safely and to an acceptable standard, it counts as being unable to do it. The "repeatedly" test is particularly useful for people with FM, as you may be able to climb 2 steps, for example, but you couldn't do it over and over again because of pain and fatigue.

You should submit a mandatory reconsideration and claim JSA while waiting for decision. Take in a medical certificate when you go to your first appointment, and they will relax job-seeking requirements for up to 13 weeks.

As soon as you get an unfavourable decision on the MR (which is almost inevitable, I'm afraid), submit the form for an appeal (called an SSCS1, and downloadable from the government's website). As soon as that form is received, you can go back on ESA but at the basic rate. You will then be able to stay on ESA all the time you are waiting for the tribunal.

While you are waiting for the MR decision, use the time to get an appt with CAB/Welfare Rights/any other advice agency so you can get specialist help with the appeal, and get as much medical and other supporting evidence as you can.

And ring up for the PIP forms, and get an appointment for specialist help filling them in.

Good luck!

Applying for jobseekers is a bit sticky as you have to sign a declaration that you are fit for work

No, you can get an "easement" for up to 13 weeks, as above.

Thanks Superdandy. I won’t apply for jobseekers as I am not ‘seeking’ a job. I can’t work at all. I feel so poorly all the time. Sorry you had to go through this as well.

We are struggling as losing my salary has had a big impact on us financially. Although, me leaving work was the only decision we could have made.

I feel a bit better now that I can get this overturned and I will fight it all the way.

It was job centre plus I attended. The lady interviewing me, never looked me in the eye. She just typed and typed whilst I talked. She asked, what I thought, were irrelevant questions. It’s a farce.

Thanks LakieLady. I didn’t know that about job seekers. I was just so shocked that she said my benefit (ESA) would stop that I couldn’t really continue the conversation as I was upset. So, I didn’t get asking any questions.

Thank you for all the useful information. I’m going to be busy in the coming weeks. It’s just so difficult as my head is in a fog most of the time.

You should claim jsa if you are eligibile. You can go onto something called extended period of sick for about 12 or 13 weeks. Please do seek proper benefits advice.

Apologies... I didn't know about the easement for JSA. Sadly no one and nothing I need the system told me that crucial bit when I was going through this.

I also didn't know you could go back in basic rate ESA while waiting tribunal - again, this was never included a second info at any point in my experience, though I waited five months for the tribunal.

The system clearly has even more holes than I realised. It terrifies me that as an articulate, well educated person with plenty of support and who worked as hard as I could to make sure I knew what I was entitled to it's still totally possible to miss out on payments through ignorance.

I'm sorry OP. I have fibromyalgia, EDS, ME, and lesions in my brain that are being kept an eye on for the possibility of MS.
I've been struggling for years, and despite my GP's encouragement, I haven't even attempted to claim ESA or PIP for these very reasons. They make it so, so hard.

We have just gone through this with DH. He was interviewed by a trainee physiotherapist! I think the assessors should at least have some idea of your problem. His assessment was cancelled 4 times! Not in advance, when he actually got to the centre!! They really are just taking the piss out of people! He was told in one occasion that the person with a special knowledge of his problem couldn’t be there! Then later told assessor doesn’t actually need knowledge!!
Anyway, he was asked totally irrelevant questions! One being, do you have pets in the household! When he said we have parrots, he was asked if that’s a bird!!
Sorry, I digress bit it still really annoys me! We appealed. We also contacted our MP (my niece told us to do so as she is in the job herself) and he write to them on our behalf too. We got the consideration overturned. Whether the MP being in our side helped or not I don’t know, but something worked anyway.
I’m sorry you are going through this. It’s worrying and I hope you get sorted x