Well the envelope landed today and I was turned down....I'm gutted to say the least! half the questions on the sheet where I scored 0 I wasn't even asked! ..it seems unless I am unable to walk and talk, wash and bathe myself and get lost anytime I leave my home I won't qualify! 😞 I left teaching because I was unable to remember my students names....I would forget what I was lecturing many many times midway through a sentence...and even prompting from my students didn't help....and marking essays became a nightmare because I couldn't remember what I had read! I was unable to carry my books and struggled to walk from the car park to my class...I only go to work in my car and no longer go anywhere I don't know because I get lost so easily...I don't go out alone because I become anxious that I will get stuck somewhere because many times I just cannot walk any further....I only went where I know the seats are not too far apart, and that stopped the first time it rained and I could not keep sitting down...I don't socialise anymore or watch TV because I can't keep up! I can bathe myself but not wash or dry my hair...I use a small stool to step on and hold onto the sink to get in and out of the shower...my friend or Mum will come on a morning to help me get moving and help me dress....sometimes I just stay on the sofa because it's not worth the pain of going upstairs.....I don't cook because the pans are too heavy and I can't chop and peel anything so live on microwave meals....I barely sleep and don't feel like I have when I do...I am constantly exhausted....in constant pain and I don't know what to do now...I know I can't go on like this without some help...I feel invisible....sorry if I sound like I am feeling sorry for myself...I think I am tonight....😁 thank you for listening xxx

51 Replies

  • I have no experience of this but many here have appealed decisions and won, I'm sure someone will come along with good advice. All best wishes. Lou x

  • what a flippin nightmare..interested to see how others respond, Don't despair, take appropriate advice and challenge it. Good luck.

  • I had exactly the same letter just before the Christmas break 😠😬😡😢 I am gutted too but after thinking hard about my situation and pain , I decided to appeal. Please don't be put off by the negative reply, they do that as a deterrent and most will give up at this stage as its too much effort and stress. Those who have endured the misery to appeal have often won. Good luck!

  • Appeal they turn most down on application but around 40% of appeals are successful with assistance from areas such as Citizens Advice etc.

  • I am so genuinely sorry to read this and from what you have written I would say that you stand a good chance on appeal as you have described being disabled! I want to genuinely and sincerely wish you all the best of luck. Please take care of yourself.

    All my hopes and dreams for you

    Ken x

  • Try getting the CAB to help you with the form and always take someone with you to the assessment. Please appeal the decision and good luck to you xx

  • Hello need sleep

    I am very sorry to hear that you are going through this trauma. I especially sympathise with you having working in a school myself. There is a website called benefits and welfare. They have helped me tremendously to get PIP. They charge you £20 to join. They can help you to appeal .

    Most of the symptoms you described also apply to me so I would encourage you to join them and follow their guide through the appeal process.

    At first I was hesitant to join the site but today I am so glad I did because they gave a step by step guide how to appeal and I followed them and was successful.

    Best of luck to you and I wish you well.


  • I'm sure I've seen before on this Forum that you can ask Admin for access to the B&W information as the Group has membership.

  • R no . I had my assessment 15 Dec phoned z mine was still pending . MY assement went really well . Told me on the phone my dla would be extended if not made a decision by the 16 Jan . Don't give up am dreading the brown envelope but could wait a little longer because of the Xmas holidays :(

  • Hello Needsleep, I read you post and understood what you were saying,,,,the appeal process is stressful, but that is you next port of call,,,, you stated everything so well, and this is the sort of thing you need on your next form,,,, you say your pip was stopped,,do you have a car from motability?,will you lose that as well?. can you get help with the forms? and did you put in about the help you need,,,have you considered getting somebody to be your live in carer? and they get carers allowance,,,,

    you have so much to deal with the terrible pip is a major stress that nobody wants,,and feels distressed when the kick in the teeth arrives,,,,,my turn will come,,,oh dear...

    I hope you can get more help and everybody on here is here for you,,,Karen.

  • I was like you and was told it was nothing to do with my thyroid because blood tests were normal, even though I did my research on thyroid so I knew it was! I ended up buying my own thyroid medication to prove to the doctor that my problems were my thyroid and indeed I did prove it, he now gives it to me on prescription!! I feel much better and even though a lot of pain remains it is improving all the time, my brain fog is improving all

    The time and the lethargy is much better! I still have a way to go but I know I'm on the right track back to wellness after a whole year in constant pain! Go to your doctor and get all the thyroid tests done, not just TFT but also T3, TPO and TGB antibodies and ask for ultra sound test on yout thyroid gland! I pestered my doctor for this since March last year and even though my bloods looked normal he finally agreed to the ultrasound in October and it turns out my thyroid is actually shrivelled up!! Your symptoms sound exactly like mine and they started treating me with methotrexate and hydroxychloroquine for RA but it was my thyroid all along!! Do some research into Underactive thyroid, there is a forum on here called Thyroid UK with loads of great info! Hope you get better soon! My life is now almost normal again!

  • So sorry for you. You must appeal, from what I have been reading about pip, if you can walk a certain amount, then you don't qualify, and they are knocking back so many people who really need the help. Your Doctor may be able to help with a written letter. Good luck.x

  • My husband applied for this a while ago and was turned down as well he was gutted as he felt it was a judgement on him as he has ME and damaged nerves and a lot of people don't really believe there is anything wrong, but you have to remember that their job is to pretty much find any excuse to turn you down it isn't a judgement on you as a person or your illness or how it affects you its just someone stuck behind a desk trying to balance a budget. Try an d get in touch with some local support groups and the citizens advice and put through an appeal but don't let it feel like a critism of you as when it comes down to it these people know jack about anything medical. Good luck sweet x

  • How terrible that you didn't qualify with the illnesses and problems that you have. I would advise you to appeal. It just makes me angry that ppl are getting these benefits when there's hardly anything wrong with them! Good luck xx

  • Hi the same happened to me, I only needed 2 additional points so went to tribunal, who turned me down and took points off my original assessment. I was gutted at the time but if you let this affect you, they win X

  • Appeal! I understand completely and relate: was turned down for any mobility related PiP, walking downstairs out of my flat or to put out rubbish got too much: so depression on top. U have some help which is great: can they help you with appeal? Brain fog is a bitch!

    This seems to be a problem with fibro and benefits.

    The website mentioned may be a start. Post on a couple of forums and see if any appeals have been won.

    I want to appeal bt been turned down once and was just gratefull that my PIP is same as the dla I was getting. Not enough to really live, always anxious about money:

    I never wanted or wished to be on benefits tho I am so happy I have more than 0.

    How does one get a carer? My family ain't bothered about me, docs r mainly wankers: 5 years of fibro- depressing! Can't even get effective meds it's a joke!!

    We need to fight this but we r so tired!

    Take good care of urself n keep us updated 👍

  • I think to get a carer you should phone your local adult social care provider, social services. I think they would then come out and assess your needs .

  • Appeal...you must so many cutbacks with pip and esa...i cant get my proper rate on esa keep cancelling...im writing to my mp..

    had enough now ..how can you be treated this way when you are so unwell.my heart goes out..i say FIGHT THE GOOD FIGHT APPEAL ALL THE WAY PUT IN WRITING PAGE BY PAGE I DID AND GOT IT OVERTURNED......GOOD LUCK

  • All of what you have said is me I have been refused because I occasionally used to knit don't give up I'm at the appeal stage go to your doctor ask for a letter request they look again and if that doesn't work appeal it's only by so many of us taking it to court that things will end up being looked at again and changing I wish you all the best in your endeavours xx

  • I agree with you looks like now they are doing this to genuine people...its harsh and the reality is it is happening..do you think its to do with the tax year april..somethink not adding up as they are refusing quite alot thus side of xmas...mind you like i said tge esa are doing the same..i think them do work hand in glove with pip...but its all CLOAK AND DAGGER...if you get my meaning.. as since i got my award pip ...ESA have turned there back on me IT IS A FACT..before it happened esa wanted me in....IM STILL FEELING LET DOWN BY THIS TERRIBLE SYSTEM....

  • I think it's about numbers everybody has been told to cut back they target as many as they can in hope that a percentage won't bother to fight and let's be honest there are people who will abuse the system unfortunately we are the dolphins in the Tuna net I do agree they are all cloak and dagger together, even your utility people are used. I had a visit from the fraud dept of benefits because I didn't want my water bill taken out of my ex husbands name. they told me it was the water board reported that he may still be living with me. They only told me as I was so upset

  • I agree but the esa wrote to me before pip to say id had my SDP work that one out..at the time i didnt know id been awarded pip.than the cancellation came for my ess assessment that was due on the friday of what my award had come through..Its just not fair.wen i know people got it no problem..so i do beleive its about cost affective..and say you had pip you not get anymore..see my point...

  • Yes I see your point. they all communicate through computer while we still have to get our ans through the good old royal mail hence they are two steps ahead funny how when it was dla one of they're advisers told me they were completely independent of dwp not the case ne more

  • Please appeal! My husband was turned down for ESA and appealed, we got help from the local welfare advice service who did all the forms for us and we didn't even have to sit down in the appeal hearing before they apologised and gave us the award. We also managed to get PIP using the great benefit and work site mentioned above and being very careful to fill in the form with attention to the worst days and bearing in mind the descriptors. The process does cause a lot of stress though and if you can get any support then please please use it.

    Regarding your symptoms, you sound a lot like what I have been at my worst and you have my sympathy as it is rotten to feel like you have bad flu all the time! I have been diagnosed with low B12 and hypothyroid and have finally started treatment although I am still under medicated as yet. The B12 has helped a lot with brain fog and I'm hoping that the thyroid will help too.

    Good luck

  • Your first step is to ask for a Mandatory Reconsideration. You have one month from the date on the letter to do this.

    Do it by phone at first just to make sure you do it in time but then follow it up in writing.

    Tip: send everything to the DWP in writing.

    Most often the decision remains unchanged by the reconsideration, but not always, but at this point you are allowed to appeal.

    You have to go through this to appeal, the government changed the law a couple years ago.

    Also, when you ring to request a mandatory reconsideration, make sure you request a copy of your assessment report. This is what the health professional wrote about you after the assessment.

    You need this to appeal, as you will know exactly how the decision maker came to their decision on your claim.

    It will have your recommended point scores and the DWP decision maker will usually just follow this as they are not medically trained and rely on the health professional even though you may get a physiotherapist or a paramedic or maybe an occupational therapist.

    The government don't use doctors anymore as they too expensive!

    Hope this helps.

    I've been through this myself but a slightly different route than appeal and am now on enhanced rates of both daily living and mobility components of PIP.

    Fluffybunny xx

  • Sorry should read send everything recorded! They have a nasty habit of losing things..

  • Actually you need send it special delivery, that means you have that letter signed for individually where as first or second is signed for as a bunch and only top letter named, costs more but they can't question that they not received it, actually got this info from somebody who regularly deals with these departments.

  • Well I've always sent recorded with no issues. They can't deny they've had it then.

    The one time I sent something normal post it never arrived.

  • Regarding your symptoms, have you had your vitamin D levels checked?

    As most people in chronic pain have very low levels of vitamin D.

    It is also linked to depression, anxiety, MS, fibromyalgia and others.

    My levels are virtually non existent and I am on therapy of 60,000 Iu a week.

    It will help a lot with aches and pains from the bones.

    You can even develop the adult form of rickets called osteomalacia.

    Google it hunni xx

  • That is worth knowing. Thank you for that. I will ask for mine to be tested 🐸

  • Appeal. Definately. I have 2 friends who were in the same situation as you. One was successful, the second is awaiting the verdict.. But the stress that this causes is imeasurable on ones health..

    Good Luck. Keep us posted.

  • Sorry to read about ur struggles, although difficult try not be disheartened. Appeal against the decision and all the facts about the difficulty you have with simple tasks put on ur appeal. Is there someone like a housing officer, citizen advice that can help u write your appeal. I've been seriously ill for over 15mths only starting to get back on my feet. I got knocked back for pip with scores of 0 for everything, also the assessor said I wasn't on strong painkillers even though at time of my assessment I was having to take oramorph and tramadol. They seriously don't have a clue. I am lucky to have improved with my health since my op in September and just returned back to work 2weeks before Christmas as they've told me I'm not entitled to any benefits. My housing officer has just appalled on my behalf and waiting for outcome. Try keep positive heartfelt live sent to u and will pray u have better luck over the next month or so with ur appeal. Xx

  • You can reapply hun, there's no wait time to do it.

    And this time you'll have better knowledge of the whole crazy process!

    Just a thought x

  • You need to ring them ask for M r you could ask for consideration under reg 35 go to dial for help I did and was reconsidered

  • So sorry to read that you were turned down for PIP. I was given ESA in 2010 after appealing and was eventually put in the work related group then after a year I was taken off it even though I had gotten worse and was then made redundant. I tried to get PIP last year but was turned down too even though I had help with the form. I couldn't face the stress of appealing so now get nothing in financial help and have to rely on my husband. What makes me angry is hearing other people who are given it and actually admit to telling lies about what they can and can't do. I have a friend who even gets the blue badge but can go walking in the Lake District. It seems the genuine people are getting a raw deal. You must appeal against this decision. If I had felt stronger mentally I would have done but I find my fibro goes through the roof when I get worked up.

  • I wish you well. Do appeal!!! xx

  • It is DWP trying to exert itself to cut back benefits....get an independent advisor & appeal but make sure you get extra evidence to submit within a month .

    First is mandatory reconsideration then tribunal ...DWP don't like that ..use also benefits & work site.

    Yes I have been there and got my car back ..after 3 months without it. Thanks to my advisor.

    It does work go for it

    Hugs to all

  • Wow good on you..does it work same way for esa do i need a welfare officer as they keep cancelling my assessments everytime..i have a nurse and carers visits me...they must know this as i cannot for the life of me understand why i cannot be kept appointment they keep doing this every three weeks make a appointment wen i phone them..than its cancelled im phone them...them not writing to me HARDWORK...AND STRESS FUL TO SAY THE LEAST...

  • Yes but make sure a mandatory reconsideration is not done on original application you need any EXTRA paperwork from friends/family & health professionals.

    My advisor took all paperwork off me .not to say takes the stress off but gives extra support & deals with DWP on my behalf ...

    Through in tribunal application same time as mandatory reconsideration so you don't get out of time ....

    Good luck

  • Write down your post on paper and when you appeal send this post with any other paperwork. You have described in a very detailed way what many of us suffer and how we cope. When u filled original forms you might not have said how you manage to do things, and at the interview, I think a lot of us feel we must minimise how I we cope.

    Please let us know how you get on, Best Wishes,


  • needsleep, submit an appeal [review at first as this is required them to reconsider] do you have a support worker? have you been assessed by a local authority under community care act? do you have a main carer? have they submitted statements to your application? did you attend at a mec for assessment and how far was it from your home?

  • Everyone has their bad days so don't beat yourself up about it. The transition from being an independent, capable person who can do everything for themselves to someone who can't always do things - even simple things is a very hard journey for a person to come to take. So even being able to accept that we become different through no fault of our own is very hard.

    The system is not geared up at all to help people with this transition. In a civilised society you would have a care worker who would help you. Help you to understand the changes and also be able to support your applications for support from the system. I think for many people, its not a very civilised society and you are left out in the cold.

    If the most they can do for you is to send you a form then look at completing the form from a different perspective.

    For instance, just because you can wash and dress yourself sometimes doesn't mean you can do it always. So answer the question from the perspective that sometimes you can't. I don't know what the PIP form looks like so I might be talking out my backside here. But I know one of the things that happens when you are going through the transition is that people often look at what they can do instead of what they can't. I did this. So when I was asked by my doctor - if I had trouble walking I would answer - only sometimes. Most of the time I can walk. This did not give him the information that he needed to help me. What I should have said is - yes on occasion I have trouble walking and cannot walk upstairs or even across the room or to the toilet without great pain. Because then I found that I got some help and that help means I retain my independence.

    If you are new to disabled its hard to come to terms with it. There is such a stigma with being disabled and there is a lot of discrimination. The DDA is there to protect disabled people but even those who claim to protect the rights of disabled people such as local authorities discriminate. If you work for a local authority and your disability caused you to go absent from work, you get put on something called capability - if you are disabled it means that you can't do what people without disability can do. So really the definition is that you are not capable of performing in the same way as a non disabled person. So why do they put disabled people through capability? The answer is that the authorities do not understand what the word discrimination means.

    Sorry if this is long and boring.

    In your case I wonder if you can appeal the decision and ask for help to be reassessed. Saying clearly that you have cognitive problems. If you don't get help write to your MP. Because until people start explaining to our representatives what is happening to vulnerable people in our society nothing will ever change.

    Lastly, we should be glad of the better days and when we have bad days we should have help so they are not so bad.

  • I'm so sorry I know the feeling I have been turned down, asked for a reconsideration turned down ready to appeal let's see. Not sure how Ill you have to be to get PIP.

  • Sorry to hear that you have been turned down for pip but don't give up you have to appeal and keep going. I think they make us go through so many hoops so that we might just give up but persevere. I am in the process of filling my form in so know what you are going through, best wishes x

  • This sounds exactly like me,phone your local welfare rights and make an appointment and they will help you,they are on your side and work with you.


  • U shud go for an appeal it sounds to me that u shud AV got pip . Do u get esa n did u AV dla befor ur pip claim

  • sorry to hear this. It all adds to the stress. Go on the website of FIGHTBACK FOR JUSTICE. They will give really good advice, and help you appeal, and have an almost 100% success rate. You are not charged for the service, but can make a small donation if you wish. You can also call them for advice. I managed to be awarded Enhanced rate for care and mobility on PIP with their advice.

    Good Luck xx

  • You could also contact FMA UK dedicated benefits section using this page of the website:


  • Sorry to hear that you have been turned down for pip. I empathise with you as it took me ages to get DLA first time round my concern is not being able to get another mobility car again. I have distal myopathy and Multiple Sclerosis as well. As you say it makes me annoyed when some get it when there is nothing wrong with them. Those who really need the help have to jump through hoops. As you need to persevere and appeal against the decision, as you do qualify. I lf they have their way people like us would not be seen let alone heard. Good luck and don't let them have the upper hand.

  • Hello. I know how you feel. I have just been turned down for Ill-health retirement. It's like you are expected to put up with pain everywhere and keep your eyes open regardless of feeling like faalling asleep. I have faith that things will work out but I don't know what's in store for me. Feeling 'invisible' must be awful........wish i could do something to help you. Maybe you can appeal? Keep me posted and I hope things sort themselves out. Hx

  • APPEAL - i scored no points with a duff back and epilepsy, after going to the court appeal (a big bundle of notes handed to me the day before court ) I scord 15 points on my epilepsy alone- ok it took two years on basic £75 pay, but i was reinstated( and got my 2 years money back dated ); I am now trying to work out about reapplying, But no one in the dhss knows the rules.

    ATOS wanted everyone off ( well the goverment ) and they where a hatchet job.

    APPEAL - over 4500 have committed suicide because of this ; the goveerment needs to be held responsable, oh and its saved no money at all independent.co.uk/news/uk/p...

    And yes the test is rigged I know of no one who can't lift an empty box ( one of the questions in the test ) BUT i can't find the empty box factory to work at.

    And lastly if i had not turned up I would have been thrown off ( resonable ) but as I turned up scored ZERO POINTS ( Been able to look after onesself )because i turned up.

    ( last of all a politician get £200 a day when he is in parlament for breakfast which is a £1000 a week thats £4000 a month - I get £101 a week which, is around the £4000 per annun - how about we just cancel the rich politicians breakfast. No one hurt money found )

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