I'm 30 years old, I have Fibro, IBS-M and a shiny new heart condition that is yet to be granted a name.
I applied for PIP in February, I was unbelievably awarded 0 points, I angrily applied for Mandatory Reconsideration ( I can't remember if that is the correct name or not) and spent 5 grueling hours typing out a rebuttal. I have again not been granted PIP.
I am so incredibly frustrated and upset. I'm at my wit's end with the whole thing and even thinking about having to go to an appeals court is making me so anxious. I don't want to do it.
I'm 30 years old, I shouldn't be going to the toilet in my bed or in a bowl because I can't get my legs to move. I shouldn't be unable to fed myself because I can't hold a knife or cutlery most days. I shouldn't be putting in false teeth because I have been unable to hold a tooth brush and brush my teeth for years. I shouldn't have to spend three days in bed after daring to try and do something with a friend, that usually ends up being terrible anyway. I shouldn't be taking medications because I can't get any sun or the vitamins I need.
This has been the straw that has broken the camels back. I try not to complain, because there is always someone worse off than myself, but I'm so done.
I hope you're all having a low pain day.
Gemima
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gemimafibro
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I'm so sorry you haven't been awarded PIP yet. Unfortunately most decisions stay the same with a Mandatory Reconsideration, which is very disheartening.
It's certainly worth pursuing this with appealing to a Tribunal, as the success rate with this is currently 73%. It's not a court you will be facing, rather 3 people who have nothing to do with the DWP. There'll be a judge, a Dr, & someone with an understanding about disability. All they want to find out is, on the balance of probability, do you fit certain descriptors that are looked at with PIP.
Most tribunals are still by phone or video call. You can have someone with you for support, but they will want to listen to you. Altho it takes time to get to the tribunal stage, it's faster than making a new application, &, if awarded PIP, if this is your first claim, you'll get backdated money from when you first rang to start such a claim.
Let us know what you decide, as I'm sure everyone here will support you along the way.
Thank you so much for your reply. It has given me great relief. I will go forward with a tribunal I think.
I think I'm struggling a bit mentally at the moment so to hear I wasn't restricted enough, when I'm currently stuck in my bed due to a flare up was incredibly hard to hear.
Thank you again. I appreciate you taking the time to respond to me
Hi again Gemima - I have to disagree with Ajay somewhat, as it's very difficult to prove an assessor has 'lied,' as you can't know a person's intent. With an assessment, altho they may write down what you've said, they then form their own opinion based on your claim form, etc. & assessment. There'd be no point in an assessment if they just wrote down what you said, unfortunately. Yes, there will be inaccuracies, but put these behind you as tribunals are well aware of poor assessment reports. Concentrating on your assessor's report will not get you a PIP award.
So, it's a fresh start (& please know you're not alone in getting no points initially, which a tribunal later decides there should be an award). First look at the PIP activities/descriptors again, as PIP is based on these: cambridgeshire.gov.uk/asset...
Then give a couple of recent, detailed examples as to the difficulty you face for each applicable descriptor, i.e. when did it happen, where, what happened, why did it happen, did anyone see this, & were there any consequences to attempting/doing an activity?
Say if you can't do an activity 'reliably,' i.e. safely, to an acceptable standard, repeat as often as one would reasonably expect, or if it takes you much longer than someone without a disability. See this mentioned at the end of the link above. This makes your appeal individual as to your exact problems, so brings it to life. Accurate description as to the difficulties you face will make your claim not an assumption, more an assertation as to your own actual problems.
If you're up to further reading, then do look here which gives even more detail as to what's looked into. In particular see section 2.2 about 'reliability.' gov.uk/government/publicati...
All you need to do initially is say that you disagree with the decision that's been made, & will send more info later (hopefully the above).
You could also look here to see if there's a Welfare Rights Office that may be able to help: advicelocal.uk/ but, be assured, you can do this on your own if needed, if you're willing to see there might have been gaps in your claim form & assessment as far as the PIP descriptors go, you can do this.
Thank you so much for your reply. I will read all of those and use them to help guide me as to which information I need to be giving and what examples of my struggles apply.
Also if I were you I would put down what you are like on your worse days..not anything else..if your in bed for 3 days..who helps you..it is not about your conditions..but about what you cannot do for yourself..my toilet is too low so needing help in and off toilet..even with seat riser given it is still unstable..I have to hold onto windowcill and basin and arthritis is hands and fingers don't grip right...Getting in and out of bath need help as could slip or fall due to gripping with hands..even with a bar drilled and attached you can still slip..given a seat to sit across bath as cannot get down in bath anymore due to arthritis and bakers cysts..and if I did.. how could I get back up..also how can I sit on bath seat if my legs are really bad that day and I the cannot pull myself up...
Also keep copies of everything you write as no way can you remember with fibro fog..I'm sure others on here will tell you their stories.. can you hold knife to prepare vedge ect.. I cannot most days as in too much pain..do not say about good days as they do not care..I hope you have better luck...
No-one should just say how they are on their 'worst' days, nor neglect saying how they are on better days, rather say how you are on all of your days. Fluctuating conditions should be taken into account, & PIP is about how you are the majority of the time.
go forward with your appeal! I did. I did it on my own and attended on my own. There’s nothing to fear. I found the panel warm and welcoming, they asked me a few questions and gave me their decision there and then. They’re not there to catch you out and no-one from DWP even bothered to turn up. It wasn’t intimidating at all. I found not only a sense of relief that someone listened but also the confidence to stick up for myself a bit more often! Good luck.
This gives me hope that it won't be as bad as my mind is imagining it to be. I feel up until now that the whole thing has been one big trap. It's an awful process.
Thank you for your response, I really appreciate it ❤️
Sorry to see you are having such a crappy time of it,
I cant understand why you have not been awarded anything at all. ??
If you can survive on another benefit or wage or anything,try to get on money wise.It can be a huge pain in the backside, you have to try and get yourself as strong as possible to go for the battle which is the DWP and PIP.
I sometimes think it depends on if the accesor (sorry cant spell) has a good day or not,What reason does it give for you not being able to claim PIP?Keep your head on and straighten those shoulders and let these people know you wont be messed around! Depending on your circs you can reapply in 6 months, Hope you get the results you need
Thank you for your reply. I'm currently on UC with Limited Capacity but I'm struggling to survive on that and had sadly to give up working a year before COVID hit. Not being able to work has been the most frustrating thing as I've worked since I was 14 and I loved my job.
I don't drive, so having to take taxi's to get literally anywhere I need to go is really expensive. I live with my parents but they're getting older and have their own health issues now and I don't want to keep having to relying on them. It's unfair to them as much as they say they don't mind. They've done their part in raising me and it just makes me feel terrible.
I haven't received the letter to tell me the reason yet. I was told I'd have an answer by the 24th and I hadn't heard anything so I called this morning. I'll keep fighting though. I'll straighten my shoulders as you said.
Thank you so much for your reply, I really really appreciate it.
keep fighting, I was awarded 0 then again 0 at mandatory went to tribunal telephone assessment the judges were lovely and really listened to my struggles I was awarded high awards on mobility and care my repot was also full of lies from DWP
So take it all the way you have nothing to lose at this point I also sent to the court letters from friends and family to say how my illnesses effects me and my daily struggles
Thank you for your reply. I'm so sorry you have had to go through this too. It took me seven years to get my diagnosis, and I had the stupidest idea that I wouldn't have to fight so hard to be heard after diagnosis 🙄. How silly I was. I will be strong as you said and keep fighting.
I know it's grueling they will do anything not to allow you PIP. I was treated the same before and I took it to appeal court I was very anxious but was determined to go, it's not easy they ask questions but I just answered them best I could I had my son with me which made me feel a little easier. When I left I was so relieved it was over. When the envelope came with the result I was so surprised because at the time I was only claiming for mobility part but ended up with both enhanced rate for both components and it was back dated which was nice when it went into my bank. So don't give up because that's what they want you to do, and with your I'll health you deserve to receive PIP so can make your life a bit easier. X
Thank you so much for your reply. Everyone has been so kind. I'm so anxious about the tribunal, all the waiting around is so stressful. I wish it could just be over. I'm so worried about forgetting things and not being able to get my point across properly. I feel like I'm wasting people's time because I'm so slow and then I rush and miss out what is important.
I won't give up. Thank you for your kind words. They mean so much ❤️
Make a list of everything you need to say about your illnesses and how they each affect you so you're prepared, and take someone with you to help you through it. Good luck and keep us updated! X
The whole PIP process made me feel as if I was lying to cheat the system. I ended up keeping a pain diary, recording levels/type of pain ( e.g. persistent excruciating nerve pain), impact on me (e.g. too sick/wiped out to eat). I drew graphs of how much time I had to spend in bed.Also, if you've had these disabilities for a while, you'll have already made adaptations to your life and your home. It's worth unpeeling as many as you can think of, together with the impact each had made (e.g. furniture placed in a way that I can reach a door, which I have left open because I can't turn the handle. Wearing no underwear because I can't get it on and because it hurts when I do manage.)
Record events, such as having friends to lunch, including preparation (i.e. several days sleep, ready prepared food, etc.) and the impact .... I even recorded the pain it caused me to fill in the PIP form.
I got a home assessment because I insisted it would cause me harm to travel.
Also, remember to include the debilitating impact on your (our) mental health. Because of my need to "dash" to the loo, and the pain in my feet, I confined myself to a single room for 4 years. This led to bad depression, which made the pain worse.... Anxiety about doing anything that causes our body even more pain is as debilitating as the pain itself.
I wrote all this down in a journal and included it as part of my evidence, partly because I hated talking about my life and how limited it's become due to pain and exhaustion.
PIP doesn't pay as much as it costs us to apply, but it's the only approach we can take. ( I had been Self-employed so couldn't even claim ESA/UC)
It was good to meet you here, and I wish you well with your claim.
Honestly, I just felt like I had read my own story back to myself reading your reply. Thank you 🥹. That sounds horrible to say to you, but listening to someone else express exactly what I'm going through/been through made me feel less alone ❤️
I feel exactly the same way about talking about it all, I know I'll cry from frustration and I really don't want to do that in front of strangers. It's so painful to talk about all the things that have been taken away by having Fibro.
Where they willing to read the journal? I had thought about it, but I thought they might just roll their eyes, scoff, put it aside and just ask me all the questions I'd already answered in said writings. That's been my experience so far with most people, even those in the medical field.
Thank you so much for your reply, it has really really helped me so much mentally. I'm grateful for you today.
Hi Dee - Depending on when you stopped working, you can claim New style ESA if you have sufficient National Insurance contributions/credits for the previous 2 financial years. You can check this here: gov.uk/check-national-insur... About ESA: gov.uk/employment-support-a... Being/having been self employed doesn't preclude you from UC either, tho do check to see if you would be better off with this, as it's not always the case, & you can't turn back once this is claimed. Depending on your circumstances, savings etc. it might be worth putting your details into a benefits calculator to see what may be available. Please see: benefits-calculator.turn2us...
Thank you so much for your response. I really appreciate you for sending me the information about the changes made to ESA/UC for the Self employed.I was lucky enough to discover that, as the original injury that set it all off happened when I was on active service in the WRNS in 1987, I came under the military rules for ESA, etc. They couldn't take the Fibromyalgia into account as this developed later, but I felt financially cared for by the Veterans' Agency until I reached retirement age last year.
PIP remains a trial, but at least I'm not so desperate for it.
I'd love to get the message out to all ex-military members of th e FM community to remember that, as Veterans, there is an organisation to help them.
I continue to find great comfort here, where there are people who simply understand.
Have a look at a group called fightback on Facebook they are amazing they help you apply for pip or other benefits they are a group of solicitors etc there services are free and definitely worth a look xxx
I would advise to ring the c.a.b. and they will help you. I have the same problems and now mine is going to a tribunal with help from my case worker at c.a.b.
welcome to our world, sorry you have had to experience what a lot of us have also had to.
i applied to have mine looked at again as my condition had changed. i have been left only able to do 30 minutes a day of normal daily activity and that is on a good day, most of the week i have to sit or lie down all day, after having the covid vaccine. they turned me down, they claimed that they came to this decision because my condition hadnt changed since my last review. my last review was in 2018 when i did not have a consultaion in person or on the telephone, the last face to face consultation they arranged was probably 2015, they ignored what i put on that form and what my doctor had said. so basically they came to that conclusion on precisely nothing, no facts at all. this time they state that, now are you ready for this?, i do not need any aids, because 'MY GP DID NOT PRESCRIBE THEM', i wonder how many gp's 'prescribe' walking sticks and grab rails. when i was diagnosed my gp sent me to a physio, she told me that i needed 2 walking sticks, she only had one at the time which she gave me and told me to buy another one. i can walk about 12m before the pain in my back, neck, hip and knees is unbearable, they claim i can walk over 50m without assistance, they also claim that i am only on basic medication, i am on the medication that i can tolerate as i have bad reactions to a lot of medications.
well now we know how they are recouping all the money they wasted on covid!!! the elderly, the sick and disabled
Wow 😳 I have never heard something so ridiculous. The whole system needs an overhaul. I'm so sorry that this is what you've had to go through and experience. It's absolutely terrible and downright shameful of them.
I too am like you on the medication front, I can not tolerate many of the medications I have been prescribed over time so I'm just on the "basic", as they'd probably call it, codeine. From what I've learned through this forum and looking into Fibro myself, I feel like people with the condition are basically just told to get on with it. Screw our quality of life, just deal with it.
I hope things start to change for the better, but right now I can't see it happening
Don't give up! Thats what the DWP bank on. The majority of PIP claims fail at the first attempt but are later awarded by Tribunal. Have a look on this webpage, these people are fantastic. They are based in Manchester, but cover the whole UK. Wishing you well xx fightback4justice.co.uk/
I got knocked back for PIP. Best thing I did was have an appointment with citizens advice, they helped fill in my form. It’s all in the wording that you use. You have to speak in their language. After the help I qualified for PIP and it made such a difference. You’ll get there soon lovely!
Thank you for your reply. Honestly, I think that's a part of where I went wrong. I filled it in by myself, whilst I was in a flare up, and the Fibro Fog was in full force.
I honestly hate bothering people, I feel like such a burden. I've always been so independent, from childhood. I put up a 10 foot trampoline at the age of 12, by myself once, because I didn't want my Mum to have to do it after she'd finished work 😂. I'm struggling to let go of that and accept that I need help whether physically or mentally.
I'll definitely make an appointment to speak to Citizens Advice. A few members have mentioned it, so I'll give them a call.
Thank you so much for your reply. I really appreciate it
Hello sorry you had such bad experience did you have help filling in your forms as certain charities and in my case my housing association have benefit advisors who help with filling in paperwork etc I've in past had similar experience where I rang up saying 30 things were wrong on my assessment either wrong or total lies so said at time of requesting mandatory reconsideration that alot of things were lies and said I would go to appeal and a week later got letter saying I had been awarded pip mobility and help my advice is always get copy of report the assessor filled in and check what you said to what they wrote best of luck and keep fighting but get help from benefit advisors if you live in housing association property or vheck out local charity help with forms I used harc in past in South East
I took pip to appeal and they ended up phoning before and upped my reward, I had submitted full medical history and photos of aids I use, young carers support, letters from friends and family about my struggles and also used fightback as my support, they submitted it on my behalf.. it ended up pip didn’t submit anything to support the case, and as renewal hadn’t even done a assessment .. I spoke about how some days I can do things but can take days to be able to do it again… also that standing for any length of time causes us pain before any distance walked. I Was asked could I not use a grab stick to put socks on!! I asked him if he’s ever tried this as a abled person and he admitted probably not easy 🤣 definitely worth fighting x
You know what's truly bizarre about it? Pip is supposedly an in work benefit, yet unless you are certifiably dead they don't want to award you anything. They penalise you for being well enough to work. Go figure.
You've had great replies here. My advice would be you must go into detail. Always. For e.g. I had outright lies on my report about mobility. I clearly said I do not manage to get outside my house most days. In fact I said I had not been out at that time for over two weeks. Well the report said I had no trouble walking and got out most days(how??!) . I also said I got confused finding my way around.
This wasn't good enough. Looking back the assessor even gave me hint asking me for details but I couldn't remember due to the brain fog and anxiety of the call.
Try to always give very specific examples. Detail, detail, detail.
I agree it is a complete joke the form you have to complete is long and confusing and in my opinion it worded in a way to try to trip you up.
I was refused first time around when it was dla I didn’t bother going to appeal when. In hindsight I think I should have but the second time I applied I repeated myself through out and got awarded high rate both care and mobility indefinitely I had a home assessment.
When I had to apply for pups the form was even worse had to repeat yourself throughout it’s the way you word things again had home assessment and was awarded enhanced but for 3 years at a time my conditions has got worse but not improved yet still only get 3 years at a time. I believe I should not have to renew every 3 years but 10 like most.
My husband is also going through similar we think he should have enhanced mobility instead he keeps getting low when he renews in a few months he has to reapply yearly hen I think he should appeal. If he doesn’t get enhanced.
I hope your successful I don’t understand how you can not get any points though
please seek professional help with this you stand a much better chance of being award. CAB, disability advisory or if you live in social housing your Housing Officer can help. I would keep a diary for at least a week (you can get one on line or if it’s painful to write/ type record it on your phone. I hope you take this to appeal and you get the assistance you need sending hugs 🤗 xx
Same thing happened to me, there were 25 blatant lies on my report.
I took it to tribunal via telephone and the 3 people were lovely. I even feel the doctor helped me along with what I was saying. Awarded enhanced for both, received large back pay! So please don’t give up. I very nearly did as the stress of it all really did me in but my daughter (who attended the assessment with me) persuaded me to as she was so cross about the lies.
Have a look at Benefits and Work website and if you can join it do so as they have loads of up to date advice and they let you know when the dwp change anything too. They give brilliant advice on the whole process.
It is disgusting the way we are treated like liars when we are genuinely entitled to PIP. The dwp make it so difficult in the hope that we give up but please don’t as you are entitled to it, so keep going, you have nothing to lose.
Let us know how you get on and good luck though I’m sure you won’t need it. Stay strong. I know how you feel though, it’s hard to come to terms with the fact that our lives have completely changed but this site helps no end, even if you just read posts, and makes you realise you’re not alone.
No worries, it always auto-corrects to Gemma from Gemima ☺️
I completely agree about the stress aspect of it all. The whole affair has already been stressful enough and now it's going to be a tribunal 🤢.
Thank you so much for your kind words. I appreciate it more than I could ever say. Everyone here has been so kind, welcoming and informative. It really is a great community.
I've been through the PIP process 3 times now. Went to tribunal (and won) once, won a mandatory reconsideration the second time and the third time I agreed with the PIP assessment.
I'll keep my advice as short as I can.
Google a site and forum called "Benefits and Work". I am *nothing* to do with the owners and unfortunately you have to pay around £15 to access the forums (for a whole year) but it's the best money I've ever spent.
There are comprehensive guides on there for absolutely every aspect of pip. On top of that the service on the forums is second to none and you will receive advice from both those that have been through the PIP process and people actually *trained* in helping people through the utter mess that is PIP.
You are not alone.
I must reiterate, I am nothing to do with the owners of the site but there is no way, NO WAY I'd have won an appeal at tribunal and another at the mandatory reconsideration stage without their help.
My last advice. Do not, bother complaining to the company employing the "health professional" (almost always a physio with just 2 weeks training in the PIP process...) it will get you nowhere! It's not the right route of "attack". I wasted hours on emails, calls and letters to the (then) ATOS and it simply sucked up my mental resources that should have been aimed at overturning the judgment in a more productive manner.
Remember, the PIP process is designed to trip up those that should qualify for it, it is rotten to the core but with the right advice you can take them on and win.
Good luck and I wish you all the best for the future.
Edit: Great to see someone else on here had recommended Benefits and Work too. They really are that good, they help with ESA claims etc too.👍
Always worth asking for copies of your assessment reports. They tell lies. Certainly 2 assessments I had done by atos were full of untruths and outright lies. One of the assessors day jobs was as a mental health nurse who also lived in my home town. I felt sorry for her patients, she was hard faced and downright rude. I've attended 3 tribunals over the years and always turned down but won on appeal. with the help of an advocate and my GP who wrote good supporting letters. (don't know if they still do things like that in this modern world) What timewasters they were. 25 years of experience in trying to access benefits with deteriorating health and the stress of being made out to be a lier.
Now I've reached pension age and no use to anybody.
hello . I am sorry to hear this about your pip. Did they give a reason as to why pip has not been awarded ? I have just filled the form out for pip today but I donot have the evidence yet from my g.p or doctor. Looks like I will have to send form and evidence at a later date. I work full time but had to stop doing the day shifts as it all got too much for me. I now work nights where I can work at my own pace and feels so much better.
Hello all, I'm just dropping in to update everyone who was kind enough to reply to me many months ago.
I had my tribunal in court on Wednesday. It did not go well. I cried through most of it, couldn't get my words together to answer their questions and the so called Doctor that was on the panel told me "well, everyone gets anxious" and completely diminished my personal struggle. I struggle with speaking to strangers at the best of times. This was overwhelming. Obviously, I was not awarded PIP. They kindly gave me 7 whole points. But as I "cook for myself, wash myself and change my clothes when I leave the house" I was awarded no points at all for mobility.
I'm honestly at a complete loss as to how to proceed. I don't have any help, because I don't have anyone to help me. I "cook" because I'd die otherwise. I don't have any "evidence" as even my GP is dismissive of my condition.
I'm completely done with life today. What is the point in continuing trying to live, it's all just a wasted struggle.
But alas, thank you to everyone who commented. I appreciate your kindness.
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Assessment for ESA A JOKE
