It's become all too much...damn fibro! So much pain, ghastly weird symotons, mega mega IBS, endless migraines. .....plus degenerative disc probs add to excruciating pain. Just had to accept I cannot carry on this way and be expected to work another two a day half years before retirement. GP and consultant say I should claim PIP and ESA but frankly I'm terrified of the assessments having read so many articles and posts about how awful they were and the outrageous lies some assessors come up with. Just the thought of the added anxiety had triggered a worse flare. It what to do? I can't continue working. I'm the only wage earner at the moment and I am told if zi apply now the most I will receive us two years PIP and then another assessment! But, if I wait until I and 64 (6 mths away) thec2 years will take me over retirement age (66) and then I will receive it permanently. What a quandary. Ever ever applied for any type of benefit in my life and the worry over both current money and PIP & ESA assessments is actually making me ill.
Sorry for long rant but I'd really really appreciate some feedback from anyone.
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Merrrm
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With a few very limited exceptions, ESA or its Universal Credit equivalent is a benefit for those out of work and unable to rejoin the workforce. At the very least you would need to be on sick leave from work to apply and not receiving Statutory Sick Pay. ESA is based either on your National Insurance Contributions record or assessed against your household income. You had best consult a benefits adviser at a Citizens Advice Bureau to discuss the ins and outs of claiming and how it might impact anything else you could claim, while still working.
PIP is not means tested, not dependent on National Insurance Contributions, not taxed and available to both working people and non-working people alike. All that matters is whether your mobility is impacted and whether you can carry out a series of Daily Living activities. They have little interest in your diagnosis, only in how your illness or disability affects your ability to do these things.
Answer it honestly with no exaggeration to get your likely score. DWP asessors will always score you at the lowest level they think applies fully to you.
To claim PIP, you first register your claim by telephone. They then send you a long form to complete. I have posted previously on how to produce the best response to the form healthunlocked.com/fibromya...
The next stage is a face-to-face assessment, either at home or at an assessment centre. The assessor produces a report. You can request a copy of it from DWP. The report goes to a DWP Decision-maker who makes the decision and writes to you. Their letter uses extracts from the report but you are entitled to ask to see the full report. If you are unhappy with the decision, you request a Mandatory Reconsideration and submit evidence as to why the decision is wrong. A different Decision-maker reviews the decision and writes to you. If you are still unhappy, you can appeal to an Independent Tribunal. 75% of tribunal decisions are in favour of claimants.
You have nothing to lose by claiming PIP. It is hard not to get stressed by the process, but if you can treat it as a process and nothing more, you can get through it. It will certainly help if your GP and Consuiltant, rather than just stressing your diagnosis (that DWP does not really care about), actually write about the Mobility and Daily Living activities and say what point score/level they consider you to be in. That is by far the most powerful evidence you can submit.
Tky for your detailed response. I have been signed off for 8 mths. I am self employed so and have lived off savings. But there isn't much left. Consultant is sending me a form to complete and return to him that is a bit like a pip firm so he can produce a comprehensive report for me to use. I'll give Gp a copy to use also. Frankly, my pride as well as anxiety has hindered me in applying for anything. Now I feel a proper fool.
But still feel sick at the thought of a face to face assessment.
I would go ahead and apply for pip I waited and waited people kept saying apply but I didn't want to claim benefits or admit how bad things were . Finally claimed after being off work for 3 months, thought it was time I went back so insisted I was ok, two hours in to a four hour shift I was crippled with pain. I got sent home and told I shouldn't be putting myself through that amount of pain. Forced to claim by circumstances was just about to have face to face appointment and lockdown came. I then had a telephone appointment which lasted half an hour. Result lower living allowance and mobility awarded for three years. Just be honest go into detail of what you can and can't do, explain clearly and concisely. I received mine in may back dated to October. You need to try. Best wishes
Some good detailed replies for you there. Good luck. There are no guarantees you will receive PiP permanently I am 66 and due for a review, the most we pensioner can hope for is an award of 10 years.
Thank you for your comment. I agree, there's no guarantee of permanency. Once I've got my ducks in a row (Gp and Consultant) I'll make myself start the process.
My experience is much the same. You are initialled to the benefit
Go to cab they will help fill out form and again imagin you are filling out on your property worst day I’m sure you can find someone on hear to com with you for support.
I am having treatment for fibro and all that goes with it .take a look at Simply Treatment. I've had tried everything over the last 12 years but apart from feeling tired I dont feel as anxious so waiting to see the final results after 4 sessions then 2 weeks to see final results fingers 🤞🤞
I'm 49 and the thought of trying to work for another 15 years!!! Just apply but ask if can be recorded there are guidelines for this. Hard for them to twist things. I was having one of better days at my assessment abd to be honest as I had to go on own think that's an instant fail as got in car and didn't get lost. You can appeal and are entitled to apply thats what you have paid for all your years at work so don't feel bad. My sister in law gets it and she gets out and about more than I do but has a stronger diagnostic reason.
So Sorry it is horrendous being in pain constantly and exhausting especially when you are trying to hold down a job. I am only on the standard rate of pip but know my condition has got worse and have put off contacting them to get another assessment why I don't know? I was uptight going for that assessment and one of my sons went with me. The nurse I got was so very nice, and after I came away I couldn't believe why I had been so uptight, had heard the horror stories to but it was no problem. Thankfully I got word a few weeks later that I had qualified. The assessment must have lasted over an hour.
ESA was a different kettle of fish. I was in for all of 15mins and didn't qualify for help, and Citizens Advice advised me to appeal. When I got the assessment papers I really thought they had got me mixed up with a someone else. It read I had a knee examination ( I was tested for reflex only) I have damage in both my knees MRI had confirmed this, and it said I had been up and down throughout the examination so no probs mobility wise (I walked and sat on the examination couch and back). So many other things I couldn't believe i.e that I visit my family and friends and they live just 5 mins away my nearest son is 20mins away by car and I don't drive. I struggle to walk to the local shop and back. I wrote to them and told them about these untruths a and had so much writing to do for this appeal.
I had lost my husband months earlier and really wasn't at my best to deal with all of this appeal in person so it went through without me being there but I still never qualified. C.A. told me they get nearly 300 pounds (this private company that does these assessments) for every one they reject I am sure it was. Please don't be put of by this. If I was you I would get a letter from your GP and your Consultant to support your claims. I don't honestly think they will question your Doctors reports and you have more than a just cause for seeking help.
You have nothing to lose and please take someone with you that knows what you are going through. My son was great and was able to give some input about maybe things I had forgotten to let them know. If you are struggling health wise you are entitled to get help!!! Citizens Advice were very good, so even a wee visit to them to get the ball rolling, they even help with many people who are struggling to fill out forms. I wish you good luck for the future, healing hugs x
Thank you for sharing your experiences with me. What a dreadful tune you had with ESA assessment process. Sadly it's this type of assessor that has me so stressed I'm having anxiety attacks just thinking about it. I do struggle with fibro fog and just get so confused I'll end up bawling my eyes out at the assessment or getting so frustrated with myself I'll co e across as stroppy!. Just yesterday I friend called and told me she'd been refused PIP and was going to have to appeal. If anyone deserves and needs it ...she does! Poor gal cannot walk 10 yards and her pain levels even o strongest opioids are through the roof. I was as supportive as poss on the phone but after her call it left me literally shaking. She had a dreadful assessor who told blatant lies. Sounds like your ESA assessor did a similar job on you.
This is what I'm afraid of. Isn't it so cruel to have people in absolute fear of an assessment!
Thanks for replying, such a shame about your friend. The ESA nurse who did my assessment was pleasant enough I have to say I just couldn't believe when I got her report what was written down. I have heard some people ask to record these assessments. They have no reason any of them to be unpleasant and if you have doctors letters to support your claims I honestly feel they can't question the doctors diagnosis.
Both assessments were absolutely fine by both nurses and as I had lost my husband and was nervous and the pip nurse asked me about day to day things I too couldn't hold back the tears so please don't worry about that. The Nurse I got at the pip assessment sat first of all and went through everything she was going to ask me first of all, and took each part at a time, she was so very nice.
When my son came to pick me up I had said to him I didn't want to go but he said I needed to make the effort. It also isn't a lot of money the standard rate but as I wasn't age for my state pension or working and my husband had passed (had been ill for 3 years with leukaemia and renal cancer) it was a huge help to me and still is. Please don't be put off you may not even get the same assessor as your friend. I was told when filling in forms or at assessments you relate how you are on your "Worst" days and you know everyday can feel like that.
At the ESA interview I had to sit for over an hour to wait to get taken. The waiting room was packed and I find it painful to sit too long. I was going walk to the loo just to get myself moving but was worried I would be called and my son had to get back to work. If there had been empty seats I could have got up and moved about and sat elsewhere on them and then back into my own seat and that was even put on the report that I had been able to sit in the waiting room with no problems.
I can't carry shopping bags now it kills me. I always have the wee over the shoulder purse type bag because of any weight, and gone are the 4 inch high heels many years ago sadly lol! it's slip on trainers for me now, and I have to use a stick which I hate. Make sure when you go you are as you are at home. On my report by ESA it was said I was "well turned out". Maybe I should have went with my old track suit bottoms on as I am at home every day (I am usually never out of my pyjamas) and my hair only combed through and no make up on and it would have went in my favour.
When I appealed I mentioned this. So many people have told me they watch things even from you entering the building but I don't know how true that is. I remember the day of the ESA assessment I had to stand at the desk till the lady gave me a ticket with a number on it and I hung my walking stick on the counter while she spoke to me and she asked me was I alright standing there till she went and did what she had to, and I said yes, who knows, maybe that was even taken note of.
I have always been quite a proud person and even going to the pain clinic or getting picked up by family and friends I make an effort clothing wise, though it takes me ages and I end up knackered before I even get out the door. I never go out without "my face on" as I call it. My pain consultant remarked one day that everything clothing wise was matching (probably by sheer luck than anything else lol) and that I looked well. I get this all the time but he is very aware that I am in constant pain and stiffness (the invisble enemy as it is known) all the time and I told him it was such a huge effort for me having to go anywhere but I try to make an effort. I told him it was called "the sin of pride" and he said well please don't lose that, you keep on making the effort as long as you can. My Mum was always the same and sisters so I suppose you follow suit.
Once you get into the assessments you will be absolutely fine, be yourself and answer honestly, your Doctors have diagnosed you are unwell and know one can question that. Citizens Advice when they told me they were so annoyed about my ESA result said that normally the Pip one was the harder one to qualify for but honestly, both interviews were absolutely fine, it is just like sitting with your Dr. Get your friend to show you her assessment report and it will give you a wee idea of the questions. Please please don't be put off, if I continue to get worse I will definately need to go for another pip assessment at some point. Get the ball rolling and go for it, take a family member or someone who knows you well. My son was great at saying things that I had forgotten to let them know. let me know how you get on. Bye x
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Finally a referral to the Rheumatologist. What information do I take to the hospital?
please can anyone help me to see if I may finally have an answer if I may have this condition 
Thats it I give up for today
I feel like I have failed 
