Pip declined

I recently had my assessment for my pip and have to say having received my letter within 2 weeks I am totally mortified... first for a benefit that is not means tested I appear to have been declined because of my job and secondly because I can drive so I can't be ill enough to need assistance.... what a joke I wasn't awarded 1 single point because everything I "claim" to have difficulty with can't be right because I am a supervisor or because I can drive... has anyone else had same problem ....

Much love


136 Replies

  • Pip is about how how your illness affects your life and how you can cope and get about Edited By Admin These people who do these assessments are highly trained of how not to award pip not trained to give it I learnt all this from other members on the Foram and the citizen advise You should of done the same May be you should apeal Edited By Admin Good luck my friend

  • Harsh erny

  • Yea don’t why i said that

  • With all due respect you have no idea how my illness effects me I was about to be given a manager position but had to turn it down due to my failing health.... my employer has been really understanding about my condition and allows me to work flexible hours so if I am having a bad day I can go rest and many people with varying disabilities can drive so I don't see how that is a reason to decline...

  • How very sad that on a forum such as this there are still people who perpetuate the myths about disability that cause such damage to people's lives. It has taken so long to get fibro recognised as a disability and here, in the very place someone with fibro should feel safe, we still have a fibro sufferer being told they're not disabled enough. It is extraordinary that such judgemental comments are made when the personal circumstances of the OP are completely unknown.

  • Shocking...how can you...you must experience fibro flares...I have many,many disabilities. I also have two young boys.Some days I struggle through because o love them and so want to be there for them, some days I can drive and shop. Mostly I die inside feeling a failure because I can't manage to keep a home and look after them. Driving and working doesn't mean you don't "deserve" pip. It just means that some days you push beyond what you are able to do versus what you need to do and what is expected of you. Surely we all understand that here.....judge not lest ye be judged


  • Well said we should be here for oneanother x

  • harsh words again, they are some uncaring folk on this brill site, take no notice .george16 huge hugs xxx

  • no matter what you may think ,there is a way of talking rightly to folk , its called empathy, i feel you dont have any..

  • you was very rude to george16. not sure if they male/ female, but they may very soon have to give up there work due to pain, only they know there limmits.. i wish them all the best in there appeals..xx

  • zzz dont worry i will..

  • Thank you for your support

  • George I'm sorry my reply affened you In my own way I was trying to help you but I was too abrupt please forgive me And please don't leave the forium I had my own pip assessment three weeks ago and had to stifle up shill to get to it I was I think lucky as the guy who varied it was very nice , I was helped by Ken and other members on the forium of how to approach it Iv got Fibro, Tinatass Asma And RLS so life is differcultI get bad reactionsfrom some of my medicationOnce again George I'm sorry for harsh reply And as I siad these people are trained of how not to give pip

  • I am in pain and raise a family...whether I be in agony, exhausted, debilitated. Some days I battle through because o love my family and desperatley want to.live and function normally

    Others my son's go to a carer. It destroy me....and them

    Reality some days I work through my illness..just

    Others it's the impossible and I just want to die.seriously none of us have the right to judge or quantify anyone's illness or ability on this forum. Surely we are here to just support each other not slag each other off ???

  • I agree am shocked by the lack of empathy from some individuals on this for x

  • Good days,bad days...flare ups ?

  • no good days, just Bad days.. Chronic days and shoot me now days

  • Thank you

  • you are very welcome , good luck if you appealxx

  • Go to a site called Benefits and work...they will fight your case if you want them to...the site is very good don't confuse it with DWP...The page you is purple on a white background....you can sign up and pay an annual fee....and get really good advice....hope you find it ....and good luck..

  • I will take a look thank you. 🐧

  • I agree with you house77 don't judge.I am shocked how nasty and uncaring some people are, don't judgeyou don't know how people's illness affects them personally.On a good day i can drive and on a bad day i can be in bed all day in agony so please don't judge.

  • That's a bit harsh

  • No, Wendy, you're judging everyone else purely on what you yourself experience. Everyone is different in what they feel and how they deal with it. Just because you can't do something doesn't mean that someone who *can* do it doesn't have fibro as badly as you. Maybe they bear pain a bit better than you do. Maybe they push themselves more than you do. Maybe their situation is such that they simply have to work as long as they possibly can, so they grit their teeth and drag themselves through it.

    I worked full time from age 18 to 61. I had fibro and chronic benign pain in my lower back for 32 of those years. Then I lost half my hearing in the space of five seconds and found deafness and severe tinnitus added to my difficulties. Then I developed the ultimate nightmare - urinary incontinence. And I don't mean that I have the odd "Oops moment", I mean real incontinence.

    The last four or five years at work were absolutely horrendous, almost intolerable, but I forced myself to keep going because I had responsibilities and people were relying on me. Nobody knew how much pain I was in or how much medication I was taking. Nobody knew that I sat in the toilet at work and cried every day, or that I used to stop the car on the way to work and sit at the side of the road and cry because I didn't know how I was going to get through the day. But I was working and driving, so you would have told me I didn't deserve any help. I'm sorry, you're not "plain talking", you're talking from a position of assumption and ignorance.

  • Believe me, I have true fibro and I worked because I had to, so do many others.

    As for who gets PIP, the assessments are quite outrageous and dishonest on the part of the assessors a great deal of the time. They force people to go through two or three years of appeals and tribunals to get the award they deserve. 61% of tribunals find in favour of the patient and not the DWP because the applications have been dealt with and decided wrongly. I've been absolutely horrified by some of the things I've read on other forums. Saw one yesterday where someone had been refused because she had clean hair and clean clothes at the assessment and the assessor had decided she couldn't be disabled if she washed her hair and clothes. Someone else was profoundly deaf and was refused because, they said, being totally deaf didn't affect his life enough to be considered a disability. It's quite dreadful what the DWP is putting people through.

  • Thank you for your supportive words Tabby-Cat I am a mum to 4 children and feel like if I let this condition get the better of me I won't be teaching my kids right don't want the sit at home on benefits want to keep as active as I can for as long as I can and teach my kids the importance of working hard. I wont be able to work for ever certainly over the last few years I have gone down hill fast just want to keep at it while I can

  • I completely understand George. Your kids have a great role model.

  • I do not wish to sound rude but actually following your hurtful and unhelpful comments I do not wish to discuss my issues with you so that you may insult me further. apologies

  • At least we not all like it hun most of us look out for oneanother keep your hin up xx

  • Actually, Wendy, in most cases, if you don't include a letter from your GP with your application, the assessors (Capita or Atos) *don't* contact the GP. They say it's up to the applicant to provide the necessary information for the assessment. Many people on other forums have been told that.

  • what name is this 'WENDY' going under as I cant see any wendy posts Yet u all seem to be commenting on whatever it is she is posting.... confused dot com.... just for a change yet again lol

  • hi I am also a mum of 4 and I do sit on my bum and have benefits doesn't mean I don't do things and work hard, I try and show my children that they can work hard I want a job and have gone to lots of interviews but who will hire a 27 year old with two walking sticks who finds it hard to walk or even sit for to long, well done for working, but not everyone wants all the benefits they get I would rather work,

  • Apologies I meant no disrespect I was just frustrated at the amount of negativity I was receiving about claiming pip and I have been a single mum on benefits and do understand how hard it is and how hard you have to work to keep things going.


  • Hats off to you for working wasnt haven ago sweet i can understand where u are coming from, i have 2 boys with adhd, and my husbandhas mental health problems, i feel like i have to be the strong one but inside in far from it my girl have a few problems too but nothing major, im just saying we are not all out for what we can get, im sorry you didnt get pip i didnt get mobility yet i cant walk far but i did get the daily living hope u get answers soon x

  • Hope you ok thinking of you all fibro warriors xx

  • Tabbycat, what a thoughtful kind and honest response. I was really taken back to see the harshly written replies. Like you and Hayley, i work, and i drive, yet i was entitled to PIP. I don't get the mobility side, but what i do get helps me to pay for my prescriptions, regular osteopath treatment and anything i need to get me through the day, to allow me to work. I only work 3.5hrs a day/5 days a week as a housing officer in sheltered housing. To allow me to work i have to use a Tens machine running the whole time on my lower back. I have severe pain to my neck, shoulders, feet, knees, back, hip and groin pain when i walk, and ohh the costochronditis, skin tenderness that feel like I'm being thumped when someone touches my arm/leg.

    I am now at the point where i a struggling so much I can no longer do this job physically or mentally. After 2mths of flare up and off sick this summer, my employers of 20yrs are doing they're best to support me and keep me working. I have been receiving counselling to support me after the recent flare up. I know that if i leave voluntarily i would become more depressed than i am already, and I would need to claim more benefits not working, than the assistance i receive which allows me to work, even if it is part time. I fight against this condition and feel frustrated at how its stolen my social life, freedom to feel i can do what i want...because that what Fibro does to you. Telling someone they should stop whinging it is not helpful to anyone!!!

  • I know how you're feeling Natty. I reached the point where I just couldn't go on, and my employer couldn't offer me part-time, so I had to stop work just over a year ago. I managed to keep going long enough to pay off my mortgage, though, so I had a real sense of achievement in that. I was worried that I'd find it hard after working for over 40 years, but I've found it easier than I expected. To be able to rest when I need to is the best thing. I don't feel nearly as stressed as I used to.

  • Hiya Tabby-Cat I was just reading your post and it brought tears to my eyes. It really is awful what we go through. It's a good job we don't know what's coming.... Take care xxx

  • incontinence, I sympathise with you dearly. It's no fun when you don't get a warning before its to late..... somedays I only have to stand up and its like my waters have broke all over again like 30yrs ago I try not wear pads if not really had a flood in a few days because they aggravate me, and anything more than a dribble and they r useless and Tennas heavy flow r far from cheap..... IBS and INCONTINENCE r an expense I cant afford without my pip what with pads/ and pads for where u sit or in bed, washing every other day and theres only me, endless rolls of toilet paper and wipes and pain stops me being able to wipe self easily, so I have to use a special 'stick' for want of a better word, which is at least half the size of my walking sticks, and extra underwear and pjs Talk about feeling ashamed/ embarrassed/ humiliated. I DO SYMPATHISE Some folk just don't realise what people with illnesses hidden or otherwise go thru just to get thru a day let alone a life.

  • I worked all my life and for 30 + years of that with cervical spondylosis I didn't get a penny help from anybody just had to get on with it.

  • Me too Toolie

    I've got RA, osteoarthritis, osteoporosis and now fybro. 😟

  • I agree. That's why people with disabilities who can't drive a standard vehicle have adapted vehicles. Went must have been having a bad day. Goodness. We are all affected differently and function on different levels according to our illnesses and our reactions and responses to them,both physically and mentally.Appeal, it's disgusting the decision you have received. I suffer from almost every illness imaginable though still drive... Driving is my one independent activity. When all seems unbearable I jump into my car,day or night ...2-3 am

    Itkeeps my sane,grounded and feeling able. I can't drive a manual anymore but feel blessed and thankful that automatic vehicles and adapted vehicles exist. Don't let them grind you down. Fight for what you need and are entitled to. Much love and luck...and hugs xxx

  • Yea life is so hard im sorry for my reply

  • with respect to you I am the same way. I suffer from a disability where my bones are prone to braking and this has affected my walking and generally day to day activities. Just because I can walk from room to room people assume I am in perfect health even though I suffer from a persistent pain I've learnt to get over just to try live a normal life. The worst part about how PIP works is you can be someone who wants to work hard even with a disadvantage and be declined but someone who abused drugs or alcohol are easily accepted.

  • Not true. You are able to get pip if you work or drive. Not means tested. BUTyou have to be unable to walk more than at most 50 metres without severe pain or breathless or having to stop. If you can walk far its just not worth applying tbh.

    I had dla for 15 years. I had to change my job and worked from home or drove to nearby. I became self employed so could rest when needed.

    I am very fortunate to have a very solvent other half to suport me.

    It is so difficult if you havent and need to work.

    I was refused Esa about 6 years ago and could not be bothered to appeal because with dla was ok for money.

    But esa might be less stringent in rules.

  • Hi George16

    I am so genuinely sorry to read this my friend and I sincerely want to wish you all the best of luck. Edited By Admin it does appear they do not give it if they feel they do not have too? It really does not feel fair to be honest with you. You can appeal this decision if you wanted too? Please take care of yourself.

    All my hopes and dreams for you


  • Im sorry that you have not got what you feel you should have, being able to drive or having a job bares no impact on whether you get PIP or not, i guess you now have to ask for a mandatory reconsideration because that is part of the process but to be honest it sounds like you may need to at least go to appeal stage with 0 points. You definately need some skilled advice.

  • I am too ill to work yet was refused PIP. My condition is lifelong . I scored 2 points for daily living, and 4 points for mobility. I cannot drive and using public transport makes my illness worse. I'll try again later (when permitted).

  • My disability was for life as have RA, OA, + Fibromyalgia & spinal problems. Got care rate enhanance to more than DWP but lost out on Motability, I think everyone under has lost this benefit, so I lost my 🚗 being made aware that if I do get some payment if I ask for mandatory reconciliation I could lose it all. I am 67 & have been disabled medically since 1994 the forms say people 16 to 65 have to claim. What I would love to now is why at 67 I had to claim pip?.

  • so was you already receiving DLA and you were invited to claim PIP?

  • No I wasn't receiving DLA, I have 2 chronic illnesses, but it is an as yet , an undiagnosed illness for which I put in a PIP claim. I have been wrangling with my unsupportive GP to get the condition properly assessed, and get a referral. So I am battling the NHS and DWP. At least the DWP acknowledged that I was ill, hence the score, which is more than I can get my GP to recognise. So the assessors are not that bad after all.

  • Yes I was already claiming, & in the letter it said people 16 to 65 their benefit would stop & they had to claim pip, but you had to be born before 8 April 1948 to still claim Motability & care, after no! That's what I though was wrong as I'm 67 now! But still had to claim pip or get nothing.

  • I'd ring them hun and ask as that doesn't sound right.

    what exactly did your pip invite letter say?

  • Yes.

  • Yes.

  • Yes

  • The letter said, you must claim pip now as your disability payments are ending & if we don't receive a call your disability will stop altogether.

  • Hi


    If you were born on or before 8 April 1948 you can continue to receive DLA as long as you still have care or mobility needs.

    Anyone born after that date on DLA would need to claim PIP

    hope this clarifies things for you


  • Yes this true.

  • there is no time limit until you can claim again

    Remember to gather as much evidence as you can for your application.

    Maybe ask you consultant if you have one, for a supporting letter.

  • No limit for re- assessment 1 month for mandatory assessment.

  • I had to claim pip as they was moving from dla,had pip refused been fighting for 12mths,was in court last week and lost absolutely devastated,there is nothing else I can do now,I am 50 with fibromyalgia,oa in knees and back and severe depression and anxiety,and started with breathing problems,I just want to give up x

  • Ask for mandatory reconsideration. You only have a month so use this to time to get CA onto it. Hope everything goes well +once that's done go to appeal. Good Luck😳

  • I am confused as to why you thought you qualified for PIP. What aspects of your life did you ask for assistance with ? Like nearly everyone else I find the system confusing but I did think it was for people who couldn't manage financially themselves due to their illness hindering working and daily living.


  • it is not for one reason alone

    It for help with many aspects including dressing/undressing, walking, mental health problems including anxiety and needing support

    there are no rules on what help you need

    It isn't means tested but working especially full time and driving will be difficult to prove what help you need

    I get enhanced on both and have had to give up my car and job as I am too ill now and the effects of my medication make those things impossible

    For anyone thinking of applying, try joining 'Your Able' forum there's lots of help there

    'Benefits and work' ish another good one and if you join for £20 a year, you'll get access to all their up to date guides

    I have recently joined disability rights and purchased their disability handbook which includes guides to all benefits including PIP, ESA and universal credit.

    I have quite some knowledge of the process having gone through it myself and having to do the dreaded unplanned intervention, have done lots of research and now finally understand how the process works and how to get across on the application your difficulties and support needed

    I also got my MP involved at one point which helped greatly as ATOS were giving me the runaround so to speak!

    PM me if I can help anyone and I'll do my best.

  • So sorry to hear that george. Ask a advisor to fill it in for you. And Fluffybunny80 Can you apply for ESA if you get pip at enhanced rate? If so would it affect my Pip?

  • Yes you can apply for ESA and no it will not effect PIP :)

    Depending on which ESA group you get placed into (if successful) and whether it's income or contribution based, you can also get premiums added onto your ES

    Are you currently working? or claiming Jsa? as a lot depends on this on how quickly you can put the claim in

    if working you need to be signed off work for 13 weeks I think it is now to claim ESA but I'll need to get that confirmed.

  • Thanks Fluffybunny80 No I've left work over a year ago. The only income coming in is my Pip that'd the only benefit im on. What do you mean by premiums?

  • there are disability premiums added onto your esa for being in support group and claiming PIP daily living as long no one claims carers allowance for you.

    it can get very confusing. There's also a disability income guarantee

    but the premiums are only available with income related not contribution based esa.

  • Who can I ask more info about what you have mentioned above Fluffybunny80

  • what do you need to know

    I would ring DWP and ask why you were 'invited' to apply for PIP at you're age? maybe they made a mistake

    until you know that then you can't do much else.

    apart from the appeal process starting with mandatory reconsideration but before that ask them to explain why you had to apply due to your age

    but do it now as you only get one month from decision date to ask for a reconsideration.

  • which type ESA you can claim depends on savings, capital if any, national insurance contributions, and any other income in the household.

  • This site has it's own benefits adviser Janet. Ask one of admin and they will post link for you x

  • had to claim pip as they was moving from dla,had pip refused been fighting for 12mths,was in court last week and lost absolutely devastated,there is nothing else I can do now,I am 50 with fibromyalgia,oa in knees and back and severe depression and anxiety,and started with breathing problems,I just want to give up x

  • Many people who work receive PIP, and being able to drive is irrelevant. I know someone who has MS. He has two jobs (morning and afternoon), does the school run to two different schools every day, and takes holidays in Florida twice a year with multiple days walking around Disney World. He gets lifetime enhanced care and enhanced mobility, with a new car every three years through motability. He has bad days and good days, but his outward appearance is of someone with very little wrong with them. Appearances are deceiving, but some people here would apparently think he shouldn't receive any PIP because he works and drives.

  • It amazes me how some people just because you can do some basic things come to the conclusion that you are 100% well and always judge a boo by its front cover also those that condone that opinion are in the wrong also. I am sorry that you have been declined PIP but the best thing to do is seek advice as to if you should appeal or not as most that do end up getting the original decision overturned.

    Myself I was very lucky and had convinced myself that I was not going to receive anything but due to the serevit y of my illness I did recieve it adn was very gratefull for it. Pick yoursef up dust yourself down and go sek some professional advice. All the best mate..Ian :>)))

  • Yep. First of all how could i drive when i suffered with anxiety ? Then how can i drive a manual car when Iam in constant pain.

    Don't give up. Its an attempt to deny you what you are entitled to. Whatever you say is deliberately misinterpreted in order to stop you getting a benefit.

    Tell them as little as possible. They are not their to help. The more information they get the easier it is to use against you & declare you don't need it.

    I was recently denied pip & scored nil points. Went thru their reconsideration procedure & mysteriously 8 points were discovered using the same information. Currently attempting the mobility component which has been dismissed because i can drive ? Mental health issues also ignored.

    You are not alone. Get on twitter & join Disabled People Against Cuts (DPAC). Our human rights are being denied & we must fight back.

    Contact Welfare Rights at your local council or visit Citizens Advice. Get some held . Good luck

  • Have just been reading another forum. A woman who was on enhanced care and enhanced mobility missed a reassessment interview because she didn't receive the DWP letter telling her about the appointment. DWP said that wasn't a good enough reason for not turning up, and stopped her PIP. An MR is going to take 10 weeks, and in the meantime they've taken her car back. This woman is wheelchair bound and had paid for a lift to be fitted to her car.

    Another person posted that her son's ESA has been stopped because he also did not receive the appointment letter from the DWP so missed the assessment. Again, not receiving the letter was not deemed to be an acceptable reason. Makes me wonder if this is a new "technique" being used by the DWP to reduce the number of people in receipt of benefits?

  • I had to rearrange my assessment as I did not receive my first appointment only found out aboutit the day before when I got a text message...

  • Yeah i've heard that too. Trying to make the recipient responsible for non delivery of post.

    If you have an appointment coming up just phone either atos or dwp to check on its progress.

    I couldn't make a medical assessment myself . I contacted Atos with my reasons & they were very helpful. Telling me they could only make appointments 3 weeks in advance & to phone back in a few weeks time for another more suitable

    What they did not tell me is the date the put on my claim before they sent it back to DWP. Consequently when i rang again to re- appoint i was told i had missed the "date" i wasn't told about. Claim sent back to DWP. I phoned DWP & explained. Iam also complaining to Atos. Iam now waiting for another appointment.

    I had this runaround when i claimed ESA.. They try to shake you off claiming by these obstacles. It used to be all fresh claims were denied the first time. Now its more cruel. Its constant & its a fight. It contravenes our human rights as disabled people.

    We are in a constant cycle of medical assessment. If its not ESA its PIP. We have to learn how to give them what they want to tick their boxes & no more.

    They are not there to help but to hinder. Its a benefit fraud assessment & they will lie to deny you "points"

  • My understanding of the Disability Benefit System is that it is there to meet the cost of expenses that an able bodied person would not have to pay. It has nothing to do with whether you can do your job or not. The answer to that is find a job that better suits you. What qualifies for PIP is whether your condition(s) mean for example you can no longer cook and need to buy in prepared meals, or if you cant maintain your garden and have to employ a gardener, or you need to pay for taxis as you are unable to walk any qualifying distance. The assessment it not based on how much pain you are in or what you are missing out on, or whether you have bought yourself a walking stick, its all about how your condition(s) affect(s) your daily living in specific areas. If you don't meet that criteria then think yourself lucky that you are not as sick as those that do qualify.

  • I have 2 sons and a daughter who all have fibro and other illnesses between them. My son has high blood pressure, fibro, had a heart op, walks with a crutch is on numerous opiate drugs as well as drugs to lower his bp he is 26 he does get PIP but he goes to work because otherwise he feels his life would be worthless. My daughter is the same she took her job on after being at home for almost a year she has just turned 24 she has fibro, labral tear in her hip and Ménière's disease which is causing her to lose her hearing again she didnt want to be at home permanently and financially has to work as her and her now husband would have no way of paying rent and bills etc. There are lots of things they cannot do it does have a huge impact on there lives. They have chosen jobs that they can adapt to a certain extent. My daughters company are aware of her medical background and cannot do anything if she has time off with her menieres or fibro. I worry everyday my son is going to have a stroke and will be in a worse position but they are young and been brought up to accept that work is an important part of life and they don't want to rely solely on benefits. They didn't choose these illnesses. No one should be penalised because they may be able to work the. Benefit is to help adapt your life so you can cope with everyday things to a certain extent surely. I personally would dearly love to be able to work I spend almost 24/7 on my own I feel totally socially isolated and I certainly don't want that for them yet. We are all affected differently by fibro and other subsequent illnesses. So have to consider how it affects others around us.


  • I suggest you read up about PIP, Wendy, because many thousands of people who work and drive receive it. It's not about that. The motorbility scheme exists precisely so that people *can* drive. And being able to do a particular job or being able to drive doesn't in any way mean that you're not in pain or that you can walk any distance. I used to park right outside the main door of my office building and take the lift from reception to within ten feet of my desk. I'm sorry, but just because you don't understand something doesn't mean it's not legitimate.

  • You're still missing the point, Wendy, which is that being able to sit at a desk and being able to drive a car does *not* = "get around fine".

    I worked with a girl in her thirties who had severe arthritis which began in childhood. She had all sorts of gadgets on her desk to help her hands, an orthopaedic chair, and she parked in the disabled bay right outside the main door after driving her adapted car to work.

    "Getting around" was not fine. On a good day she wore wrist braces so she could support herself on her crutches and make slow progress from car to lift, desk to toilet etc. On a bad day she pulled herself from the car seat to her wheelchair. Not exactly "getting around fine" and most definitely not living an able-bodied life. Yet you think she doesn't merit PIP?

    Of course you have a right to disagree, we all do, but to be fair to those you are judging any disagreement should be based on facts and not assumption and misconception.

  • Because PIP isn't a sickness benefit. PIP is a "help them be Independent" payment, designed to assist people to keep their independence, including their job, as much as possible for as long as possible. It's designed to help people to live as normal a life as possible, including work if they can. That may include helping them to run a car which will give them some independence and enable them to get to work despite their disability.

    Read LittleEffie's post, she's explained it well.

  • Wendy,

    I am not going to pretend I know anything about these benefits,, I do not.

    One thought I would like to add to the mix is that I had a sister who developed Brown–Vialetto–Van Laere syndrome when she was 11. She became deaf , ,the muscles in her hands and neck atrophied first to the point where she could not hold her head up and her hands were of very limited use. Her heart, lungs started wasting,, eventually every muscle in her body was effected, both internal and external. For as long as she could manage she fought to get to school each day,, this was her choice,,, she knew she would not live much past her teens. Had it been myself I probably never would have set foot outside the door again,,, but not her!

    Do you think she should have been refused any benefits because she decided to struggle to school each day ,,,, or perhaps only getting benefit when she was put on an iron lung 24 hours a day as her muscles could no longer inflate her lungs to take in air ?

    Incidentally in the few years that she did get DLA she was able take my mum and dad to Lourdes where she told both of them that she was fine compared to some of the people who we're there, at this stage her legs could not take her weight and she no longer had control of her bladder or bowel function. Yet she could still see people worse off than her.

    She died at the grand old age of 17, she was a very special kid, of course I may be biased as I loved her very much,,, I think the thing that set her on a pedestal for me was not only her illness and how she coped with it,, but her compassion for others!

    Best Wishes, Ray

  • That is very sad Ray, she was one special girl. Thinking of her 🤗🤗

  • That is so very sad Ray she sounds inspirational thank you for sharing.

    Much love 🐧

  • So very sorry to you and your family on your loss. She sounds like she was one heck of a special young lady. God bless x

  • Your sister was obviously a remarkable human being Ray. It's so sad that it's so often people like her who leave us far too soon.

  • George, hope you are going straight to appeal! In the meantime get as much factual info from health professionals, who you deal with and know your problems, in writing. Your having a job or being able to drive should have no bearing whatsoever on your being awarded some financial support.

  • Hi George16

    Im sorry you have not got the decision you were wanting. I can see that you have quite a few replies giving you advice so I wont add to much to whats been said already. I just wanted to let you know, its definitely good idea to get some professional help and then appeal. CAB will tell you straight away if they think you are entitled to it.

    (PIP) is usually paid every 4 weeks. It’s tax free and you can get it whether you’re IN OR OUT OF WORK !

    Your rate will be regularly reassessed to make sure you’re getting the right support.

    As others have explained, its not what your diagnosis is but how your illness effects you. You don't say what work you do but I'm wondering if you could maybe see an occupational therapist. I would definitely get some good advice and then decide how you can move forward.

    I wish you well with it all my friend and do let us know how it all goes.

    Peace,, luv n light

    Jan x

  • Definitely appeal..Working is part of staying independent.. I received pip when I worked as my Co worker supported me by doing all the part I couldn't.. I also had reserve all my energy for work.. It's based on your worse days..on your better days maybe u can drive..maybe you can do your job really well..doesnt mean you don't need support.. Or that the rest of the time it would be possible.. We shouldn't compare what illness has done to each other..i Only worked 3 day eventually 2 days..but I now cant work and basically lost job due to inability to do my job..although I can't drive due to not learning how..I couldn't due to my illness anyway.. I use my pip for Allsorts of things.. everything for crutches to get out and about to take away food when I've got not energy to cook..some people may not deem that an appropriate way to spend it but these are the things that help me keep gonna. I would definitely get support with your appeal though... Good luck 🍀

  • Oh my George16

    My first PIP assessment was declined as well as I could walk across the car park.... I am now appealing, so make sure you do this within the allotted time. Speak to your local Citizens Advice as they can be really helpful. Good luck 😘😘xx

  • Yes the same happened to me similar response no points awarded. I did start the appeal process was informed that the qualified assessor made a judgement that they would uphold......... gave up as I felt I had been humiliated

  • That's what they count on!! That people, who are usually ill and exhausted with having to cope on a daily basis will not bother to appeal. Get as much professional help as you can, use CAB as they are very used to this behavior from the assessors and refuse to give up.

  • Just don't feel like I have been listened to at all. I will appeal and hopefully will be heard this time. 🐧

  • That's shite & Yes Ernie is right. They seem to try their darn hardest to decline people & it's all about how you word stuff.. If you had Said that you need to be driven to work because you can't use pubic transport,they may have given you a bit more consideration,but they really are trying to f~#<€ people up!!! Basically. Even sports persons who competed at the "ParaOlympics" were told that they may loose their vehicles,because they are able to compete.... Total Absolute twoddle....I am also dismayed at some of the responses which you are recieving on this forum...I have had FM for 25 years. I also have serious foot problems,which mean that I can't walk too far. I cannot go out unless I am driven. I hope you have the strength & patience to appeal. You are fortunate to have an understanding work environment & it should be understood just how beneficial it is for you to be able to have contact with people,as it is very difficult to have my other type of social life. The government used to pride itself on helping disabled people work & hold on to their jobs & a bit of dignity. This seems to be changing.... Again....wishing you big strength .... Peace & Light

  • Thank you for your reply I did feel like I conveyed my problems well but obviously not I explained that I can drive however I only drive to work and back I am unabe to drive more than a few miles and on a severe day my husband would drive me as I would be unable (which as it goes it was unable to drive to the assessment but no note of that) also my employer is very reasonable and makes adjustments if needed which makes working much more pleasant. thanks for your support. 🐧

  • Hi George16 so sorry your going through this. I'm a little shocked at some of the response's you have got. Please don't take any notice of people who think they can judge everyone but themselves. If YOU think you have been unfairly treated please put in for MR so they will take another look at your claim. There is a website that will give you lots of help A1esa/dla/pip benefit help and support. You won't be judged just helped. Good luck and take care x

  • Thank you I will take a look have to say I am extremely shocked and disappointed by the responses certainly not the support I was hoping for.


  • I cannot believe that there are those on here who think it's alright to have a go at someone who feels they should qualify for some state aid because of their illness(es). The welfare state is there to support sick and disabled people who are no longer able to live a fully functioning life. As for those that say things like "I lost both legs and my head but never claimed/received a penny", I presume that was their choice or were in a time when such help was not available ( a time we seem to be rapidly retuning to by the way).Edited By Admin

  • Good luck!

  • What I don't understand is if someone is able to work why would they need to claim PIp? I thought it was for people who were unable to hold down a job because of their illness and therefore in need of financial help.🤔

  • Hello Mydexter

    PIP is for people who are not able to have a fully functioning life. We maybe able to carry out a job or drive a car. However like me, I have very painful joints, which stops me from carrying out cooking and cleaning duties at home and I cannot get out of the bath without help. When I went to the CAB to get help in writing the claim, they say if a normal person without any disability would have no trouble carrying out a certain job without any issue, then you put that down on your claim form. I was awarded 6 points, and you need 8 to get the lower rate. Many disabled people hold down jobs and still manage to claim the benefit as it is not means tested.

    There are a few people who think that if you can work/drive/look after children. Don't realise how painful and difficult it is to carry out the tasks. However, they might not be able to give up work due to financial difficulties. So like me struggle to get out of bed, put a smile on and go to work. ☺️

    Big soft hugs to all ☺️😊 xx

  • I understand all that , we're ALL In pain and struggling with daily life, one way or another. I looked after my Mother who had dementia for many years while having severe pain but it just got on with it, what I don't understand is how Pip makes the pain any better and if you are working why anyone needs the extra money, if you are unable to work and need the money it's different.

  • Money will never take away the pain, but it will help with the additional costs for apparatus that is required to help with the day to day living.

    I'm not paid a great deal, and do not qualify for help from the occupational therapy system. So the money will help to ease the pain 😥 X

  • What's the occupational therapy system? Are you in the Uk

  • Yes, I'm in the UK. I had a occupational therapist come in to assess my home/sleeping area. And they are unable to supply any support for equipment for my bed or home. As I often sleep in the arm chair as it's the most comfortable place. Asked for wedges for the bed and they said no....

  • Oh I see, what job do you do?

  • I'm an administrator. My company have been great by purchasing equipment to allow me to carry out my duties.

  • Yes, all companies have a duty to make reasonable adjustments for disabled people The .Equality Act 2010

  • I am not in a receiving PIP situation at present but I must state that PIP Personal Independance Payment is an in or out of work benefit.

    There are many people that have disabling conditions including those who are amputees and therefore classed as disabled.They receive PIP to enable them to be Independant and therefore in work.It may be paid as mobility to someone who is solely reliant on a powered wheelchair as paralysed from chest down but can work at a computer all day and therefore not having to lose their Independance or career.It may be paid to enable someone to afford a hand control vehicle so that they may get to work also.

    This is just one example of thousands as to why people in work are assessed for and receive the Personal Independance Payments.

    Having a chronic pain or fatigue illness can be much harder to assess needs and in some ways more disabling due to the unpredictable way those are affected.

    For those who have to give up working due to any condition it can be soul destroying and the financial burden added to this exacerbates day to day living.

    Sickness benefit ,ESA Employment Sup port Allowance was meant to help those unable to work although again the assessments have not been understanding to those with"invisible" conditions and PIP is meant to help those with disabilities retain some measure of Independance in work,to keep working and those who can not access employment to keep some quality of life.

  • If you have nothing nice to say,say nothing,hurting people's feelings is not very nice, we all deal with our health problems in our own ways as best as we can, just remember a lot of people suffer mental health problems with fibro,yes people can have their opinions but you can still be nice and not abrupt just be nice 😘😘😘😘

  • When I joined this online community I did so with the understanding that we came together to offer, and receive, support, advice and compassion one, to another, free from the prejudices and discrimination we are so frequently subjected to in our daily lives.

    I am so shocked, appalled and disgusted by some of the comments I have just read.

    I have fibromyalgia, osteoarthritis, peripheral nerve damage caused by chronic sciatica.

    I have always worked and driven my own car, it now has to be an automatic. I have been awarded both components of PIP at the enhanced rate. This enables me to maintain a degree of PERSONAL INDEPENDENCE.

    Get it ? The clue is in the name of the benefit !!!

    I am not now, nor will I ever be, in any way, shape or form, apologetic to anyone for being in receipt of this benefit.

    I am a person with a disability, and as such, I am ENTITLED, to make my application along with thousands of other people who are fortunate enough to find suitable, manageable, employment and drive a damn car !!!

  • Well said x

  • can't believe the ignorance of some people on this forum,I thought it was one for all and all for one here. I Joined for the support, if i needed it, and I have. It just saddens me to see fellow fibro sufferers attack one another.

  • Me to Robbie138 we are all here to offer support and reassurance that you are not alone. xx

  • I totally agree SharonH61

    I was shocked by this thread, good luck George16 with your appeal. I too am awaiting my letter after my assessment.

    I am currently in receipt of dla higher mobility and lower care - I had to return to work 6 years ago to support my family and I drive an automatic car. I am just about able to hold down my job with an understanding job share partner who steps in at short notice.

    I have fibromyalgia, spina bifilda, degenerative disc disease, degenerative sacroiliac joints, two herniated cervical discs, anxiety and depression, chronic fatigue - the list could go on for ever.

    I work because if I don't I don't eat or have a roof over mine and my family's heads, my days off I do spend a lot of time recovering from the working day before and I struggle every day of my life. An accident 26 years ago has left me with pain 24/7

    If my pip mobility is taken away from me I lose my car and subsequently my job as I am unable to take two buses to work.

    The negativity of some people on here has made me reconsider whether this is a site that is helpful to me and others who are just looking for support

  • I too am totally shocked by this thread.. & saddened.. I refuse to give my opinion on the ignorant comments made by 'others', as they do not dignify a response.

    None of us really know how another 'suffers', their personal circumstances.. in fact anything about them. George16 simply came on this forum for some advice & instead met a barrage of what amounts to abuse. Those people with negative comments ought to be ashamed & perhaps think about whether this is the forum for you! This is a place for support, advice, empathy & good, happy thoughts....

    Over many of my working years, before my health deteriorated 8 years ago, I had the pleasure of working with many people with disabilities - some fairly minor & some serious.. but ALL of them worked & drove cars & were in receipt of DLA.. I have had 'disabilities' all of my life but worked until I was Retired on Ill-Health Grounds at the age of 42... Before people comment on here, they should really check their facts, as their comments could be hurtful & upsetting to others that are all suffering in their own way - they do not have to give personal details!!!!!

    My advice George16, would be to get some professional help with a Mandatory Reconsideration.. The CAB are wonderful & will guide you through the process - they are currently helping me with my PIP Appeal & a Representative is coming to my Tribunal with me. Also, any support you can get from your GP or Consultants/Specialists etc. There are also some wonderful 'advice' websites that others have mentioned on here.

    I was awarded PIP, then had a re-assessment in April & they deducted points from me! It appears that being able to hold a Peak Flow Meter, hand a small box of medication to the Assessor, not 'looking' tired & smiling once during the Assessment actually means I am fine! To add insult to injury, they actually admitted that I was 'disabled' & had some serious health problems that DID affect my Daily Living & Mobility!!! Now you make sense of that!

    Maybe they should use the 'Clap Test' that my young Granddaughters use to test how well you are... If you can clap, then you are okay! ;)

    The very best of luck with whichever route you take to resolve this...


  • I'm so sorry read this. I applied for PIP recently and got zero points. It was very disheartening. The assessor basically told me at the interview that although he 'believed' me, without medical evidence (despite a letter from my GP) he was doubtful I would get anywhere - I don't have a formal diagnosis yet and still waiting for results of yet more tests. Felt so disheartened, I've just left it. It makes you feel as if you are making it all up. Take care and good luck with any appeal. x

  • I have just had a letter saying I need to be assessed under PIP. I will let you know how it goes as I am working although it is a daily struggle to keep going.

  • Hi George

    I'm a bit late to this thread but looking through I notice from some replies that there have obviously been some nasty comments made on here. Looks like they have now been removed so I don't know what they said. But by the sounds of it I don't want to know anyway.

    I just wanted to add my support for you and say, firstly, the clue is in the name - Personal Independence Payment. The idea is it gives you the extra financial support you need to keep you in work and therefore helps you retain some degree of independence. So yes it should in theory make no difference that you can drive to work or that you are still able to go to work. The point is you need an extra little bit of help to keep you there.

    Secondly, the others have already given you some good advice about appealing and the various support groups that can help so I won't repeat that. Just say that I too would recommend you get all the help you can.

    Lastly, please don't take any notice of nasty comments or judgmental people. They don't deserve your valuable energy.

    I wish you loads of luck with your appeal and if any of us can help you with it, please don't be put off posting again. Remember the vast majority of us are here to support each other.

    Sending you lots of gentle hugs and support. Margaret. xxx 🤗💞🤗

  • Dear George, I've just seen your post. To answer your question, I had exactly the same response following my assessment all because I work as a manager, supervise staff and drive an automatic car. ( I am sure that if we read each other's letter, it will say exactly the same thing) To cut a long story short, I have been so upset about the decision because my view is that I was not listened to when I explained how my disability affects me. (I am in constant pain, can't lift, push or do anything, don't cook or clean to mention just a few) I put in a mandatory reconsideration, was turned down and I have appealed. I have a hearing coming up very soon, however it falls on a day of a close friend's funeral.

    My personal views- Being able to work and drive a car, suffering with fibromyalgia and other diagnosis does not mean you are 100% ok. Every individual's situation is different. I just want to remain independent as I possibly can be like everyone would.

    I hope you are able to request a mandatory reconsideration. There have been some very good advice given by members on this forum.

    One last thing, the DWP's response to the tribunal re my appeal was filled with lies. The asked that the tribunal throw my case out. However, the tribunal has fixed a date for the hearing.

    I hope this helps.

    All the best and Good Luck.

  • Am disgusted at some of the comments, ignorance and suggestions that just because money can't change the pain someone is in and the poster has managed without making a claim,.... makes me feel that this is not a forum I want to belong too. I joined fairly recently nd have not posted because I was waiting to see what sort of responses I could expect. along with fibro I have several other physical disabilities and am most disabled by severe and enduring mental ill health.

    I am shocked and disappointed by what I have read

    I won't post again :-(

  • Hi Sadbutalive

    I totally agree that such attitudes are not worthy of a support group. However, I have been on this group for around 18 months and I can assure you such comments are rare on here. I have found that generally whatever my own mood I can find someone here who is willing to reply and support or advice or just join in with a bit of banter. Most people here don't judge others and generally if they have nothing nice to say, they say nothing.

    I can count on one hand the number of times I have seen such unsupportive comments. And when they do occur they are usually from people who don't have the same conditions or aren't in the same circumstances so don't really understand. Though of course there is never any excuse for plain rudeness.

    Please don't be put off by the shocking nastiness on this one thread, it really isn't typical of the forum as a whole.

    Gentle hugs, Margaret. xxx

  • Oh no! Don't let a couple of ignorant people put you off posting! This is a complete rarity - I have been a member for over 2 years & this is the first time that this unfortunate incident has happened, that I am aware of anyway.

    A comforting thought, for me, is of just how many people came to George16's defence & offered their full support because that's what we do... I have been offered lots of support & kind words of encouragement since I joined & know that I can come on here with problems, questions, dilemmas.. you name it & will always receive kindness, support & advice... This forum is a Lifeline for many, which is why we were all so shocked...

    I do hope you will reconsider, as we really are a great bunch of poorly people...


  • debs Iv appoligizes to geoge Im not ignorant in my own way i was trying to help him

  • Hi Sadbutalive please don't be put off by these unfeeling remarks they don't resemble this group at all. I joined this forum earlier this year and it was during one of the worst times in my life.... I have had so much support and caring messages. I really don't know where I would be right now without my family here. We understand what you go through because along with Fibro most of us have other complaints and can relate to how you feel. I have never seen anything like what happened but I know you won't see it again if you decide to stay with us. Take care and good luck

  • Hi GEORGE, The same has just happened to me. Only I DON'T work, and I CAN'T drive either, on a really bad day I cant even control my mobility scoot. Without my scoot I'm more or less housebound, my only other form of getting out is if I can find someone with time on their hands, or a low income that doesn't mind me tagging along with them Because I offer to pay their fuel to go or taxi there and back in appreciation of their help, I get out, and even I need to get food in, and they haven't got maul on and off buses with shopping or find fuel and parking. So in my eyes its a win-win with company thrown in too. BUT NOW I HAVE NO MOBILITY NO NOTHING. If I sleep 2hrs in 24hrs I'm on a roll, but since all this with benefits, I don't even get my 2hrs, I barely ate before, but ive been forcing myself to at least eat toast or cereal and a MAIN meal Doctors orders I'm twice my normal size and cant lose the weight and apparently its because I'm not putting enough calories in my system. But all that's gone out the window... I cant even face food again with all this worry, THIS my computer, its closest I have to a life. I can't afford to keep online for much longer if I cant get pip overturned. I don't have visitors for company, I suffer deep depression, and my situation now is doing me no favours, not a day goes by, without me thinking everybody be better off if I weren't lurking in the background reminding them ,HEY, i'm STILL HERE. It's not the nicest of feelings to feel INCONVENIENT or should that be AN Inconvenience? I'm 52yrs of age and been on the biker scene since 14yrs of age left home at 17yrs of age and been independent ever since and apart from 16yrs with my daughter (she enlisted in army ) I have lived alone, doing all my own maintenance, plumbing,shelving and anything else to do with wood, ,renewals ALL of which I did alone. and now I cant sit on a bike let alone go out on 1, Camping I cant kneel the pain is excruciating, I lean down to pitch a tent and I fall over. Walking just for the fun of it, aint no fun anymore, and bldy hard going with 2 sticks. I have lost so much life I don't live as my /Mum used to say... I just exist, and with my benefits I was replacing large appliances with small table top oven, I kept falling when tried stoop down to a main size cooker. I bought an HALOGEN OVEN (like a big glass dish with a rack inside and a lid) because I used to forget so much that stuff would burn. To me, that was an accident waiting to happen, hence I bought timered appliances .... I dropped my small fryer thank gawd it was only WARM and not BOILING as I was covered in fatty oil, I was trying empty it to wash and change fat/oil. But I lost my grip, as I often do Next thing I bought was a DRY AIR FRYER. no more accidents and that's timered too. I fell once to often and had to have my teeth pulled becacause the facial and jaw pain was almost SUICIDAL Dentist couldn't NUMB me something to do with the heightened sensitivity or something.... so it was like something out of Victorian times with my screams. Ive had a deep seated fear of dentists since about 7/8 ys old, I'm claustrophobic and suffer panic attacks brown mask over mouth n nose wasn't the best thing to do on me. Even tho they were prewarned. Apparently I clawed 2 of the nurses in the kids dentist while they were tryin put me under. I came around in the HOSPITAL A few yrs ago while dentist was attempting to remove the last tooth, never been so damn afraid In all my life felt like I were being grabbed by the tooth with pliers and lifted up excruciating pain doesn't begin to describe.... in the end the surgeon/dentist said JUST LEAVE IT!! But because tooth had been damaged trying extract it... it started to decay ovetime and I just hadn't got the stomach to go back It had to rot and break up before I went back. I call it ''nodding dog syndrome'' where I keep nodding off without warning, just a minute or so, whether I'm drinking/eating/typing on here/ crochet ect. my little dog somehow brings me around... ive burnt myself with drinks and food no end, and used to cut self too dropping crockery. IBS has been stable...... until now, now its kicking my ass. My little dog is the confidence I lack, and if it weren't for her, don't think id even struggle to get out of bed some weeks. But I have to because of her needing loo and food.....I wont able afford her either at this rate... there is so much more but its taken me over 3 hours to get this far with post.... GOOD LUCK TO ALL IN GETTING PIP BACK XX

  • Just now read through your post Anji and can almost feel your dilemma. I suffer with fibro, also hypothyroidism as well as a type of dystonia called torticollis and a multitude of other ailments. I did manage to drive to my dentist yesterday with great difficulty and whilst in the waiting room my whole spine contracted and my head felt it was superglued to my left shoulder. I was in tears with the pain. The dentist was running 20 mins late and as I could not stand the pain any longer I had to go home to lay down. The only way I can get some comfort is to have support for my head. I could write a whole tome of my problems but do not want to bore people to pieces. I have now got the PIP claim forms so wish me luck with that! Kindest thoughts and prayers to you and everybody suffering from chronic pain X

  • I've been through this too. I was on enhanced rate living and standard rate mobility for two years then I was reassessed. Despite no changes to my health and the difficulties I have they cut the mobility and reduced daily living to standard. I asked for a mandatory reconsideration but that was refused so now I've lodged an appeal. The other day I finally got to see the Atos report and was horrified to see that the assessor had missed out great portions of my medical history including the illness that was the catalyst which ended my career. As well as fibro and other chronic and incurable physical difficulties I have a severe mental Illness which the assessor dismissed as irrelevant despite the medical evidence. As people have said, they are very well trained to disallow benefits which they justify by covering up difficulties, including not making a note of them at all. This man made jokes about mentally ill people, it was really disgraceful. I want to give up but my family won't let me because they are so furious with the system. I worked from the age of 14 and now am being made to feel like a liar and a lazy person. Like you I kept working through my illness until I was repeatedly hospitalised and told If I didn't stop it would kill me. Ask to see your assessment report, the benefits and work website is brilliant and helped me to draft my appeal. All I can say is that if I were the decision maker who relied on the Atos report written about me, then I wouldn't have granted me benefits either, but it was wholly inaccurate and now I have the chance to prove it at tribunal. They absolutely rely on the fact that people like you and I are too stressed, exhausted and frightened to appeal and that's exactly why we must!

    Take comfort in the fact that the people who love you will see the truth, they'll know how hard you fight and they'll admire you for it. As I learnt, those that don't do not deserve to know you anyway xx

  • I have fibro and a number of other illnesses I am employed full time and I drive. I use my flexi time and A/L to manage my illness but I have still had to have 63 days sick leave this year alone. My car is adapted I can either use my feet or my hands to drive and when that is to painful I can either stay in the office or my career comes and gets me and drives me home so I can rest. I don't have a life outside work as it takes all my energy to try and stay in work. My desk and computer is adapted I don't even have to type my work I speak to my computer and it types my work for me. We all should support each other as every day is a struggle and we all need as much support and kind words as possible. Just because we are ill it does not mean we can't work and be a benifit to the work place.

  • I don't have words. The last time , which was my 2nd p.i.p award. (I was one of the 1st ones to be awarded pip) I got it for 5 years. However i am next due in 2020. I have made up my mind that this time I have a lawyer sitting in with me, no matter how much it will cost me and I want it all on tape or in camera. They are trained not to award pip as the interview er get an incentive and 18 months later if you in a full time job they get another incentive of a few hundred pounds. This is completely against any human humanitarian right. After all I never ask to be ill. Yes I do agree to an assessment as one notice people waiting at bus tops with walking sticks then when they see the bus approaching from a distance they pick up the stick and run for the bus. but the dwp doesn't not need to scrutinise us. It should be a simple yes no interview.

  • George16 ... I suffer from COPD (end of life stage), anxiety, social anxiety disorder, depression and my left foot is totally paralysed after being stabbed. I was awarded zero points at my first ever claim. The DWP upheld it! I went to court and was awarded 46 points! Even though I am "end of life" stage COPD they still want to see me every 2 years. Don't give up and always put on the form how you feel on your worst day. I made the mistake of completing my first form totally 100% honestly.

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