The people at PIP have just hammered another nail in my coffin. I had to re submit my claim, which has just been rejected, so now have to go through the appeal, as if I haven’t been through enough already. They didn’t even get the dates right on my letter. The whole system is abysmal. Going to have to wait for a few days before attempting, as my stress levels have skyrocketed. From what I’ve been told, I did expect this, but knowing isn’t helping in anyway. They do not listen, care, or show any empathy whatsoever. God forbid they themselves suffer this awful disability. I wouldn’t wish it on them , as unforgivable as their behavior is. Sorry for the rant, but it’s better than a noose.
PIP a total farce: The people at PIP... - Fibromyalgia Acti...
PIP a total farce
Written by
Kryptonite59
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55 Replies
•
I know exactly how you feel. For me, I was going to suggest that the man i had the interview spent a day with me so see how I manage. I'm 60 live on my own as my husband left me and divorced me 3 years ago. I'm very lucky as my son lives nearby. As well as FM, I have a whole load of osteo issues. I on bi annual injections for osteoporosis. I have osteopenia throughout my spine and I fractured it in July 2021 along with my right femur. A titanium rod in my right leg following femur fracture. Have to sit on a bath slat. Re-started physio in Jan this year due to severe pain in my back and mobility issues. Been using a crutch for nearly 5 years and because I can crutch it to the bus stop, and hold a conversation, he reduced my benefits. I appealed on the phone 2 days later. Rejected again. I just gave up. I'd like him to spend a day with me. I really would. Just gave up. Why bother fighting. I don't have the energy. So yes I know how you feel. Fight. Good luck. And it's good to rant as it gets it a little bit out of our system. Best wishes. From the giver upper. Personally I think they want us to fight and stress us out.
You poor soul. Wish I could make it all better for you. What a life we have😓 Hard as it is for me to say right now, stay strong. My thoughts and prayers are with you and thank you. Something good has to come from all this. Big hugs. You’ve been blessed with a loving son by the sound of things, so that’s something to feel good about. ❤️ xx
Thanks for replying. Really lovely of you. I'm OK really. I try to remain positive. It could be better but it sure as hell could be a lot worse. Best wishes Golly x
I'm sending hugs and best regards x
• in reply togolly123
They want you to give up, that’s why we should fight it. Ask a family member to help…
golly123• in reply to
Thanks. I wonder if they try this on pretty much everyone to see if we have the energy to fight. Have a good day. I certainly intend to. And thanks, really lovely of you. Best wishes Golly x
please don’t let them get away with it, appeal it again and again, last time I had a telephone interview the medical interview womN told the dwp that I wasn’t in any pain. So I said unless she’s installed cameras in my home how would she know what pain I go through every day via a telephone call? I lost my enhanced daily living because of her comments, but the appeal board awarded me full mobility which cheered me up, so please don’t throw the towel in just yet xx
Farmerboy• in reply to
hello if only that where true. The truth is many genuine applicants for PIP don’t prepare theirselves for the assessments their application forms give misleading information allowing the assessor to assume or presume certain aspects of the claim and the applicant’s answers at the assessment then without their intention or knowledge compound the situation further. When we you or I apply for PIP ass new claim or a change of circumstances we must give as much information as to what our inabilities are and reasons why we are unable to complete or preform the PIP descriptors to the expected standards of the PIP regulations. That is to be able to preform the descriptors repeatedly in a timely manner and safely. Giving instances of occasions when and how often you are unable to preform or complete the descriptor your try to preform. I hope this help those starting the PIP application process.
• in reply toFarmerboy
I agree that could be the reason for some but my sister details absolutely everything and knows what it is they need since she has been on it a while. She went to tribunal the first time and won. She needs to appeal this time since they have reduced her award, when she struggles more.
So sorry to read this. Do not give up on your application. PIP depends on how your illnesses affect your daily living, not what you are suffering from. The forms need to be completed in an extremely specific way and barely any new claimant is awarded first time they try to claim. There are lots of people that can help, Fightback for Justice / 4UP (online) the old Citizens Advice Bureaux / Welfare rights, to name a few. Please don't give up, attack it from another angle. Wishing you all the best.
Thank you. That's really lovely of you to reply x
You're welcome, I know how hard it can be to get. Have a look around for some support from an organisation, ask your son to write a letter explaining how your issues affect you, request copies of your GP and Consultants records & report/s using Freedom of information Subject Access Requests digital.nhs.uk/about-nhs-di.... Gather all your information together, and book an appointment for help completing the form, before you ring to start a new claim, as the DWP only give you a month to get it completed and returned to them. Wishing you luck x
Sorry to hear this. May I ask what did they reject your claim on.
Momo
Everything. They just haven’t listened. It’s like they’ve been communicating with a totally different person. Last time they contacted me, I barely said a word, as I was in bed in agony experiencing a worse than usual attack. I foolishly thought the guy on the other end of the phone was very empathetic and helpful. How wrong was I. Maybe they sacked him. Who knows? In my previous correspondence they actually lied. I now do believe they get paid a commission for rejecting people, as I’ve been told on many occasions. I’d go as far as to say they should be prosecuted for the way they deal with people.
I think the telephone interview should be recorded as half of what they wrote in my report never even happened. I wanted my son at mine and she told me it wasn’t allowed, only later did I find out that was a lie
Thanks Janethaywood. When I had my first telephone interview I was really struggling coming to terms with everything , both physically and mentally and was actually in tears for much of the process. The report came back that I was coherent and calm. Unbelievable!!
Capita letter stated your conversation can be recorded, just ask. When I asked , assessor said No 🤷♀️
They took me off enhanced. Still on standard. Because I talk to my neighbours ( we actually WhatsApp not talk in person - I have lovely neighbours who message me to check I'm ok). I guess the interviewer assumed I spend hours outside chatting. I can walk over 2 buses WITH a crutch. I can plan a journey. All I do is get a bus into town and back. All hospital appointments and dental (I'm on.desonumab so i have frequent dental visits) -I get taxis. I told him I was restarting physio again which I'm still having monthly - ignored - I sent in appointment letter - still refused. I'm under the pain clinic - makes no difference either. To get enhanced, sounds like I need to be in a wheelchair. I guess enhanced only applies to wheelchair users. Wish they would just put it in there. Saves wasting my time really. Be nice to have a proper bath - use a bath slat. The whole system is just a joke. I think they should just change it and add in wheelchair users. I hope i don't end up in one. My spine, which has old healed fractures and new which I guess is when I broke my femur, my spine is currently STABLE. My spine is riddled with osteoporosis throughout and the physiotherapist has told me i need to be extremely careful. All VERY worrying. Have a lovely day x
sorry to read your assessment story. As I read many people’s complaints about the PIP process I’ve noticed that new claimants or those renewing their claims a lot especially the new claimants don’t give enough information about their inabilities to preform the PIP descriptors to the PIP regulations. That is safely, repeatable and in a timely manner for 50% to 75% of your daily living activities. Making statements like, I cope. Manage get by struggle indicate that you’re not good but not bad . Whereas I can’t do this or that because of listing the reasons why and what has happened when you have tried is a more accurate description of your situation abilities.
Just thinking about the energy it’s going to take both physically and mentally is already tiring me out 🫣 , but good advice. Have to speak to my doctor, as according to PIP, they contacted him and it was he who eagerly said he’d be more than happy to give his recommendations. That’ll be the proof in the pudding when he tells me they haven’t contacted him at all.
Hi, dont want to burst your bubble and things may have changed these days. But I remember been told they had spoke with my GP. After speaking to my doctor she said no she had not had a call.
And if she had she most definitely would not have given any of my medical information over the phone. Patient confidentiality means they would need to send her a written request for an information which she has not received.
Like I say things may have changed.
That confirms my suspicions, but I’ll check just to be sure. Thanks for sharing though Dizzytwo. It’s criminal.
Does anyone with fibromyalgia manage to get the enhanced disability PIP.
Hello, please remember PIP is awarded on your inabilities to preform the PIP descriptors as per the PIP regulations. The awards are not made on a health basis , disability or a diagnosis unless you are terminally ill. Just because you heard or know of someone who was awarded enhanced with the same or similar diagnosis disability doesn’t mean you should be awarded enhanced when your inabilities could be totally different.
Hi, If you are asking do they only have fibro and no other mobility issues. I would guess it would depend on how debilitated their fibro made them.
If you have fibro to the worst extreme where you maybe bed ridden for example or can not leave your home without help. I am sure that would be on the high end of the scale for mobility enhanced payment.
Not forgetting mobility can also be effected by mental health. So its not all about wheel chairs.
For example I have agoraphobia and my mobility is greatly impeded.
So it really doesnt matter what illness you have. It's how it effects you and your ability to live or move on a daily basis.
I get full enhanced pip. But I got the most points on my mental health and the fact my anxiety is affected by going out and mixing with people. I dont leave the house, so.etimes 4 weeks at a time. I have no family or friends and find it difficult to talk to people face to face. My son has to do most things for me and goes out to do the shopping for me. Plus, I have had several attempts at ending things, which the Dr knows all about. I have had so many call backs over the past 18 months from the Dr regarding my mental health, which is on my medical records. Which they take into account. I also have a mental health nurse who comes round occasionally to try to teach/encourage me to start going out etc. So, what I am trying to say is, because I have evidence with the Drs and mental health team about my mental health, they both wrote a report to them when they received the letter regarding my claim. I think that helped my case a lot. When i filled out the form, I nearly had a full blown mental breakdown, so I took 3 weeks to fill it in. You and up repeating yourself a lot, but I made sure I told them EVWRYTHING even stuff they didn't ask. I waffled on and on. Made sure there was no room.left on the form. I found that by letting my guard down, forgetting about my pride and how embarrassing it may have come across that the form was filled with that much detail. But, for definite my mental health swung their decision more than my physical ailments. FYI my mum is in worse condition physically than me,but only got the lower amount, as she didn't answer truthfully. She was too proud, so, when they asked her questions about what can she do her answers were "of course I can do it, who else is going to do it" (my dad has lewy bodies and parkinsons) at the time he was at home, so, she had to do everything for him. Even though she was in so much pain.
Put your pride and shame aside, be truthful, no matter how hard it is, embarrassing and how it makes yo7 look. They don't know you, only what you tell them, they build a picture based on what you tell them.
Not sure if that helps at all.
But keep smiling and keep pushing.
Love and hugs. Maz. Xxxx
Hi Maz. That is really helpful. Thank you. I know what it's like not to leave the house. I had agoraphobia following an assault by a man I didn't know. I couldn't go out at all. I had 3 lots of counselling for quite a while to get out. I do hope that you will be OK. Thanks again. Best wishes Golly x
Have you mentioned all of that to the pip people? You need to go into detail. I know it's hard and stressful, but if you take your time, do a bit a day and you 're more likely to think of other things to put without over stressing yourself.. I had to ask for an extension on my application as it took me so long. Which they were happy to do. You get it all back dated to the day you first phoned. Xxxx
Thank you for being so open Mazymoo. I really appreciate the selflessness and honesty it took to reply as you did. You’re right of course in everything you said. I’m so sorry you’ve been to such dark places, as specially as you have so much to offer as an individual. I can understand those feelings. I’m a little like your mum in some ways, just getting on with things, but I thought I’d given them everything. The whole process is an ordeal that destroys me. It’s hard to disassociate yourself from emotions and treat it as a box ticking exercise when you’re feeling at your wits end. You’ve helped a great deal though, even if it’s just to reaffirm the correct way of dealing with the situation. Thank you again.
Yes. I do....enhanced care and enhanced mobility. I must be one of the fortunate ones. My assessor was really nice, patient and non judgemental. I did have help filling out the application form from a benefits advisor. We did ask for a home assessment but I didn't get that and I was sooo nervous during the whole assessment. The assessor did say that she would recommend enhanced on both....and she was true to her word.Please keep trying....and don't let the b****rs grind you down....😘
I can’t remember where I read the 75% figure but to be safe I put both the 50% and 75% what ever the figure people need to be more up front with their abilities and inabilities, the PIP accessors are only looking or talking with you for 30 to 45 minutes average so the more accurate information is sent and explained at the assessment is for the better. To many people assume that because of their disability or diagnosis they are entitled to PIP unaware they don’t meet the PIP criteria for claiming the benefit in the first place. There are many people with a disability or diagnosis and don’t claim PIP or live fairly normal lives. But months or years later they decide that their condition has worsened so assistance or help is required so apply for PIP get awarded the lower rate then a change in circumstances and they now meet the criteria for being awarded the enhanced rate.
I’ve never seen any percentage figures allocated to activities before you must have access to different sources than myself. Somebody said to me in a nice friendly way you don’t look disabled I am on a class 3 mobility scooter. I replied with equal smilingly you don’t look ignorant but you are. She laughed .
yes I am coping with my MS and Julia her hearing and sight problems but between us with a sense of humour and the ability to laugh at one another’s mistakes makes for a loving relationship. Warming up nicely now Ajay the farm are silage making I am glad I am retired now no rushing about especially at harvest time .
PIP 😳 I had to go to York Assessment in June 2019! I have vascular disease which also must have caused my heart attack February 2019 👌I also suffer with osteoarthritis especially in my hands, ankle and feet!
Well I drove to park & Ride, then bus into York city centre, from there 20 or 30 minutes slowly walking to that PIP Centre! It was exhausting to walk as I experienced cramp like pain in my left calf especially!!! I waited for 1 hour then was told to wait another hour or so and to come back later!
In the Assessment I was asked to do certain movements, bend down and a few other things, sit on the couch and move my legs etc
She wrote everything down....
Then I was told we let you know in writing the outcome of this Assessment!
PIP Assessments needs a complete overhaul!
Unless you in a wheelchair they don't seem to care!
They don't want people on benefits as it costs Government or Councils "💰"
PIP I personally won't bother with it ever again! It's a waste of time plus travel cost, rather buy food with that 👍
I did feel angry but my previous MRI at the beginning of June 2019 was disappointing too, 13 cm femoral artery blockage wasn't bad enough to suggest stenting it 🤷😰
I still have walking problems outside, I tire easily, at work I often need to sit down and rest couple mins!
I am a kitchen porter and worked in that restaurant for 5½ years now 👍
But I am leaving end of July as I have retired in February but still working part-time 2 shifts 👌👍
I shall grit my teeth until then as I need the money until then!
Life isn't easy but I am looking for an easier part-time job and less strenous/stressful 👍
Some disabilities, like hidden illnesses you can't see from the outside, is where it becomes difficult!
Because you can't see them 🙈
Does not mean there aren't any 👌🤷👍
from what I’ve read, it’s more than 50% of the time. So 4 days out of 7 or more. Or 2 and a bit weeks out of 4. Or more than 6 months of the year.
My sister was the same, they took part of her previous award away and she’s worse now than before. She is appealing.
I’m in Scotland and they take a totally different approach to PIP. It’s called Adult Disability Payment (ADP), and you submit your application and supporting evidence and if everything you tell them checks out with your GP and consultants, you can be awarded without needing to see anyone in person. They acknowledge that the whole process causes people stress, so they changed it. So it’s a much more caring process. The main thing is to ensure you go to your GP and make them aware of all your issues, so that it is traceable. I was bad for not going to my GP after so many years of feeling like I was wasting my time and energy. I do also have several autoimmune diseases now as well and osteoarthritis and I'm struggling a lot more. I was never on PIP but was awarded ADP first time. Perhaps things will change for PIP under a different government…
Just had the same… they’ve said because I can drive to work I am not disabled
No they are saying you do not meet the criteria in the descriptors to award the benefit you applied for.
Our concept of disability and being disabled in the UK is warped. It depends on the setting, the reason and the individual. What I mean by this is that being disabled for benefits, as opposed for the NHS, or your employer as opposed to individual are not the same.
Not passing judgment but if we do not understand the question then the answer will seem wrong.
A personal example:
# I am not as able as I once was due to age but mainly fibro.
# I would not qualify for benefits
# I would be considered disabled in some sense by the NHS as I have a LTHC
# I would be considered as possibly requiring adjustments / disabled within my workplace.
So the above would get me qualifying as disabled in a couple of environments. However, I do not consider myself as disabled. Perhaps I would consider myself as abledivergent if I was politely borrowing from the ASD language.
know exactly where you are coming from, i had to renew mine, their system was complete rubbish, they take the details over the phone then say it will be about 2 weeks before i will receive the form, it arrived 3 days before the month they allow you to fill it in, i couldnt even hold a pen at the time, so how i was supposed to have filled it in and returned it to them in 3 days was a complete joke. i phoned them, on hold for nearly 2 hours before i got through, they made a not on the file and said to return it as soon as possible and gave me an extra week, i completed it as best i could and sent it back to them by special delivery 24 hour post, as it was 2 weeks before christmas and they were also striking, this 24 hour special deliver took from 12 December 2022 to 16 January 2023 to get there. when it didnt get to them i phoned them again to tell them i had sent it and by special delivery they asked me for the tracking number, when i gave it to them they sounded disappointed and made me feel like i had lied to them, as i had proof i had sent it they accepted it had been posted on time and that it would be ok.
i havent had an assessment since 2015, they claimed that my condition hadnt changed, i had a reaction to the covid vaccine which left me only able to do 20 mins a day of normal daily activity in 2020, so it had. they stated that my walking stick and grab rails are not essential as they were not prescribed by a doctor, i was told to get these by a physio. they claimed that the medication i am on for my fibro is only basic medication, i have reactions to a lot of medications so i cant take high does of anything, they also claim that i can walk over 50m, i can walk about 12m before the pain from my spinal damage is so severe i cant go any further, i am virtually housebound and i live alone, so they claimed my condition had not changed. my gp is sending me to the long covid clinic when i told him what they had said he told me to make a formal complaint about them, which i am now going to do
they totally ignored everything i put on that form, it is a complete mockery getting people to fill the forms in when they dont pay any attention to what you put
Just wanted to thank everyone for their input into my “PIP A total farce” write up. You’ve all given me the strength I needed to continue with my appeal. It’s very hard to deal with questions and paperwork when you’re suffering. It’s the last thing you want to think about, but do it , we must. Treating it like a test and taking the emotion out of the equation seems to be the best advice. I have to admit, if things hadn’t got to a desperate stage I wouldn’t be going for it, but when your on the precipice of losing everything you’ve worked so hard for all your life, you have to make these difficult decisions. I just feel so sorry for all you good people who have been stricken with this horrible disability. Non of you deserve it. Non of you should ever give up trying, or feel your lives aren’t worth living. Each and every one of you are as important as the next. Stay strong and once again, thank you . Big hugs and loving thoughts to all ❤️ xx
I have seen a video yesterday of someone who claims to have been sent the whole training manual for assessor's by a whistle blower.they are saying it's going public soon as it's jaw dropping.
I have seen the training manaual that capita / Maximus use on the topic of fibromyalgia and it is now accurate after we helped updated in over the years. Cannot speak to any process / policy manuals that they operate.
I am a firm believer in speculation without proof is a waste of energy. I do not like gossip either as an aside 
So sorry to read this. Do not give up on your application. PIP depends on how your illnesses affect your daily living, not what you are suffering from. The forms need to be completed in an extremely specific way and barely any new claimant is awarded first time they try to claim. There are lots of people that can help, Fightback for Justice / 4UP (online) the old Citizens Advice Bureaux / Welfare rights, to name a few. Please don't give up, attack it from another angle. Wishing you all the best.
Someone told me that they reject everyone at their first attempt in the hope they will give up and not fight it. I have just applied for mandatory reconsideration and am waiting to hear. Don’t give up, they just don’t want to pay out.
This is objectively not true as we have reports in here of people getting it first time and on other channels. What we do know and cannot remember exact figures is that for those that are "failed" and appeal there is a high success rate in appeals i.e. over 65% but could be much higher.
The system is better than it was but it is not the friend of misunderstood invisible and changeable conditions.
I got mine first time.
There’s a website called ‘fightback4justice.co.uk which helps with pip claims and appeals. They do charge for the service but my niece used them for her 2 sons and they were awarded full P.I.P
Hope this helps.
I'm so, so sorry you have to go through all this. I am in Canada and have been through this sh*t myself. The hardest thing, I think, is to see them finding any means to weasel out of supporting you....and not even by honest means. They make false claims. For example for me they said that I was not listening to my nutritionist when she clearly stated that I was not only following but exceeding the requirements. It is not so much being rejected but the way it is done with deception and lies and complete disregard for the suffering and the facts of life. So you can walk to the food bank....you must be in great shape. Hello! It's either dragging my behind there or starve. Which would you want me to do. Starve I guess. Then you are off the hook. If there is a really good reason to reject a claim (or even a very tiny little reason), it would be okay to cope with, but the stuff they pull out of their sleeves takes an emotional tole put on top of the physical. It's unbelievable. They might as well be honest about it and downright shut the whole thing down, because they just don't want to look after the people.
I hope your appeal is successful. Be well and at peace, my dear. All the best. ❤️
could not agree more 🤗🤗xx
Totally agree! Put your message on their Twitter if they have one or send it to the papers!
just make sure you ask for a copy of the report/voice recording, so you know what is said about you, before having to wait for the decision, it makes the whole appeal process easier if you need it, so you can prepare.
I have fibro, along with joint hypermobility syndrome, new daily persistent headache - with migraine mimicry, neck joint issues, scheuermanns disease, pots, varicose veins, cysts in my knee, IBS, weak bladder, dislocating/subluxing joints, hip bursitis, have severe anxiety, depression and ptsd, etc etc etc - there’s a lot going on, but on the outside I’m a happy soul, but it’s who I am, I try to take the positives - no matter how bad, although I suffer terribly, but if the assessors were to see how jolly I was, they wouldn’t think anything was wrong, as on first appearance I can hide my pain so well, therefore they would think that although I have a lot wrong, it doesn’t ‘affect’ me enough to get the daily living component. As most people I meet wouldn’t/don’t know, they have no idea, they have no idea I’ve barely slept, not showered or been unable to move all morning, they have no idea when I get home, I’m laid up in bed… all they see is that I just fidget a lot, but I’m on a whole host of super strong medications to get me through and I have some decency to at least try to look presentable when I go out, to them they see me and I look clean, washed and dressed, they didn’t see the struggle, so you have to explain to people the effort, planning and build up to get to that point.
I’m not under anyone other than a private physio, so I don’t look like I ‘need’ help. But the reality is, I’ve been through everyone and no can help me, so I’m just stuck here.
I feel your pain, there’s many charities you can ask for help or CAB, there’s Facebook pages too, just prepare yourself, ask for any F2F or phone call correspondence to be sent out after you’ve had it. Get your paperwork in order, anything you have medical records, ask the doctor for help too, if you’re under anyone - like pain clinic, rheumy etc ask them for help. All of my appointments I ask for the write up at the end, 1) because I have a memory like a sieve 2) so I know what’s happened and what they’ve suggested and 3) for medical evidence.
Unfortunately most don’t want you to have it, they will twist your words and try to catch you out on your answers. I always take photos of my forms, although I know the answers, so that if they try to catch me out, I can refer back to what I wrote and said was the truth. You have to be truthful, but you also have to be careful.
I’m sorry you’re going through this, hopefully you’ll get it sorted xx
Hi, Did have you try looking on You Tube for videos on how to fill in the form? There's one called Filling out the PIP form (by Warwick LinC). I found that getting the right emphasis on how your disability(ies) limit your day to day life - how much you've had to give up doing - helped my application. Also plenty of hospital/doctors letters. You can't send in too much evidence to prove your points. The YT video by Stuart McGoo is good to - although he's talking through the Attendance Allowance form, the concept of highlighting your limitations and help you need from others to do things is the important thing. Citizen's Advice will also help with benefits forms. Even following these sources of advice, I was still required to jump through more hoops and have an hour long telephone interview with Independent Assessment Services (the people who DWP contract this work to). But I did get there in the end, and as my case had taken several months, I was awarded back pay from the date of my application. So keep going Kryptonite59!
Thanks jools56. I’ll take all that on board. I have done most of it. I will heck out the video and hopefully be inspired, which I need right now. There always seems to be a dark cloud loitering about when you think summertime has come and he’s right above my head at the moment. Thanks for taking the time to share though, much appreciated 👍
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