At wits end - help please

Got the PIP decision letter yesterday, and just can't believe it - a zero score in the daily living section, they have NO idea how hard it is, they've ignored everything I wrote about fatigue wiping me out so much that if I manage 2 tasks, that's it for the day. And my Rheumy's letter told them how much of a struggle daily life is, with no-one to help. I'm in bits about this, have cried all morning, how am I even going to start to challenge this decision? Will try CAB tomorrow but need your support right now - just need a hug and some advice. Sorry for being so dismal, but just didn't expect all this. They did give me 8 points on mobility but I need the 'care' part so I can finally afford to look for a carer/home help.

36 Replies

  • I am so sorry you are upset. But rightly so. It is hard not to take these 'farce' decisions personally. I would be so angry and frustrated and near to tears for days. How dare they give you a zero score. When you feel a bit better channel all your indignation into appealing this decision. I am convinced they reject the vast majority in the hope that they don't appeal. Am sure lots of other posters will be along soon with some practical advice. I am yet to go through my PIP assessment. I feel for you and am sending gentle hugs. Give yourself a few days to get your head around it all. Wishing you luck for your appeal. Let us all know how you get on. You are not alone. Much sympathy and love coming your way.x

    (Am head shacking in disbelief).

  • Thankyou, much appreciated. Am also 'head shacking in disbelief ' (thanks for the giggle that typo gave me!! ) 😊

  • Horrible people I loathe them being in judgement over us.

    Can you write anything about your experience? Any obvious mistakes / omissions on their part? I think getting something in writing can help.

    Big hugs, remember how many appeals are successful.

  • ((((( Huge hugs)))))

    What about making a matching form of your own - same questions and tests etc that they asked you only fill it in with the 'true ' answers about how you really feel and go about your daily life.

    Get all your thoughts down on paper but keep your evidence brief and to the point and try to be matter of fact and even detached from it if you can - use bullet points and make it read like the sort of report they would do - avoid getting emotional.

    They want facts - give them facts. Good luck with it all. (((( more hugs ))))

  • I told them the whole thing on the form, went into detail, and was well supported by my consultant 's letter - they just chose not to believe me! That's the trouble with chronic pain and fatigue, they can't"see" them so assume everyone's exaggerating. But will do as you suggest, thanks for all hugs! 😊

  • I'm sure you did and I can imagine them just ignore you. For my own satisfaction I'd want to do one as they say it is and how it really is.

    What gets me about this sort of thing is that people like you and elderly people who really can't manage can't get help while you keep seeing pictures in the papers of those guys who say they can't do anything etc then it turns out they are playing in football teams, skiing and living the life of Riley minus their crutches and all the things they 'can't move without'. How do those people do it?

  • I am due to go for mine on Wednesday 18th and go only do 1 task a day so cleaning my house takes a month and I start all over again. What makes it worse is I am a Riley and not living the life :(

  • Oh good luck, I hope it works well for you.

  • Thank you, this will be my 2nd one, last time they stopped half way through as I was in too much pain.

  • Just to let you know mine finally got agreed, I had my unpaid carer as a witness and not only did I get the full mobility but also the care part. It is very important you have someone with you, they asked if it would be alright to have a student sitting in with them, I (now) wonder why? :) It makes them pay attention to what is actually happening with you rather than just box ticking, you can also ask for recording they will do their best to insists you purchase police style kit so making it impossible but they do have their on, whatever don't go on your own. I have since discovered a GP report issued prior to my first assessment was used this one but not last, so I am going to ask for a set aside on the first tribunal as they also failed to provide an II report as well at that hearing. I have no intention of letting them get away with delaying it by a year and am waiting for both reports. The moral of this story is, you are entitled to it, the assessors report and all the sources of information they used, anything missing gives you grounds for appeal and then backdated from the start when you win. Keep fighting, this middle process is designed to delay and avoid in the hope you will give up, they are not there to help you.

  • I feel so bad for you, these decisions defy belief! No wonder you are so upset.

    You will need to appeal, but you really need help and support through the process. Hopefully you will have a copy of your origional form. Does your council have a welfare rights officer? They are real experts, otherwise the CAB are well used to helping. It might be a good idea to ring the NRAS helpline tomorrow, they are there to give a helping ear, and advice.

    Please don't give up, remember that more than 50% of appeals succeed. Do keep in touch, I'm sure that you will get lots of ideas and support here. Best wishes. Mavis xx

  • Thanks SO much Mavis, all good advice. xx

  • Right, now dry those tears, big breath, all is not lost. Firstly you phone the DWP tomorrow (the phone number will be on your award letter) & ask for a copy of the assessor's report. This is important, you need to determine how you & your circumstances were perceived. Once you've received that & compared it with what you wrote down in your application form (you kept a copy I hope) you take both with you (& any supporting evidence, letters, reports, scan results, repeat prescription etc) to your local CAB or Welfare Officer at your local Town Hall, if you have problems travelling they may send someone to you, just ask. You need to act quickly as you only have a month in which to request reconsideration (though you can request an extension if you're not prepared in time) & in that time you'll need to gather supporting letters & every last bit of evidence pertaining to your health from all the medical professionals you see, plus any additional evidence not submitted with your initial claim form.

    Sorry if I'm asking the obvious but you did tell the assessor how you're struggling on your meds & not controlled didn't you?

    As you were assessed at home & live alone it should be clear you have nobody to help with even the elemental things so daily care is a basic need if you struggle.

    Keep in touch & we're always here if you need us. Big hugs. x

  • Hi I just sent my forms last week and it's stories like yours that make people nervous . I hope you get some help tomorrow xx

  • Are you meaning me A?

  • Sorry I don't know what you Thought? I have some friends who also got very few or no points and as I have just sent my forms also I am just a bit tense as to the outcome of my application. I was trying to say that the bulk of stories I heard about pip and assessments and the reports not being correct make me worry. Just answering Scotlass concern to say I agree she needs to appeal.

  • Your post was under my reply, I was concerned it made you nervous. It's an awful, biased situation, it can literally change people's lives, especially the ones on changeover given that the goalposts have moved on some questions. I've replied to many others in a similar situation as I've gone through the process.

    We need to be there to both support anyone who's concerned about their award & considering requesting reconsideration or even needing to go on to appeal as well as cheer for the ones who are sharing good news.

    I wish you well when your time comes. x

  • Yes, yes and yes again - see my reply to Fruita dnutcase, above! Thanks NMH, I will of course do everything you suggested but it feels like a big ask, right this minute. Help and support is out there, I dare say. Hugs much appreciated. Love all you guys. xx

  • I know, I understand, been through it myself. The maddening feeling won't be quite as bad once you've slept on it then you can concentrate on the job in hand in a more determined manner. Now do not let my example put you off but when I applied for reconsideration the evidence I needed was too late coming, by one month, just bad timing & the decision maker upheld the decision of the original award. That was for the Mobility component though (I was awarded enhanced rate Daily Living but I scored 2 points short for standard rate for Mobility). In my case it wasn't about money, it was more evidence to help towards a Blue Badge for my bad feet days. As it happened I figured I could only try so applied for it anyway & as I received one I didn't pursue it further. That & my 6 wheel trolley make shopping easier. You can bet I'll have all the evidence needed in place when & I'm reassessed!

  • It is sometimes not even up to the assessor its a tick box exercise as decreed by central government. So please do appeal and make sure you have everything written down and never be rushed. I think the CAB is first point of call and wish you luck. I know its not a personal decision just do not be put off and be persistent and you will hopefully get it.

  • I'm so sorry. That's really horrible. :(

    Have you seen this?

    The first steps of the appeal process aren't as difficult as you might think. They take emotional energy, of course, but not too much extra work...

    The first thing is just to phone them up and ask about your decision. Ask why you got no points. Record the conversation. Don't give them any more info or try to explain yourself at this point - let THEM do the talking.

    Then ask them for a 'mandatory reconsideration'. This is a request for them to look again at the info you provided. All you have to do is ask; you don't need to provide more information. Quite a lot of rejected applications are changed and allowed at this stage.

    It's only if THAT doesn't work that you have to get into a more difficult appeals process. ..

    Good luck!

  • Will certainly be phoning them, but don't have a way of recording anything.

    Thanks for your help. xx

  • Do you have a landline and mobile phone, and does your mobile phone have a voice recorder, by any chance? If so, you can call them on your landline, on loudspeaker, and record on your mobile... :)

  • Thanks - you are all lovely people. Would put y'all on my Christmas list, but clearly I won't have any money!!! xxx

  • Hi, first a bug hug to you xxx I agree with getting a copy of the report. They make ask if you want to arrange to speak to the decesion maker, the person who reads the report and makes the decesion, but I would avoid this until you see report. This will show you everything that the assessor wrote and can be quite enlightening. Once you have this you can address it with help as suggested.. You are a mentally strong lady, you cope on your own and I admire you for it, so you can question this and prove them wrong and you have nothing to lose. So please dont panic and take your time. Try not to get upset it will make you ill. We are all here for you xxxxx

  • Like all the others, despite the dreadful kick in the guts, it's essential to appeal. Look at all the sources mentioned above, but also look at Fightback on facebook and on-line as they can give telephone or private message support in helping you appeal. They can help you fill out forms, and in some parts of the UK can send someone in with you to the appeal hearing too. The one thing that I have remembered is not to agree to the DWP "filling out the forms" for you (yes, I know, how low!), but do get a copy of your report asap.

    We're all here for you. I had to appeal both Incapacity Benefit and DLA, have been migrated onto ESA support group and am dreading the PIP migration as I'm certain I will have a battle on both parts. The best advice from Fightback for those being migrated is (1) it's happening a lot faster than the timetable we were told of, and (2) get as much info and letters and evidence sorted out before you get the notification. If any is out of date it will be easier to get an update of a small amount than having to compile it all from scratch.

    Keep on keeping on. we don;t have a choice, we live our pain and problems every day. We need to press the case for our support, after all, we have all paid into the system, our families, and our neighbours and everyone else, too. It's an entitlement, not charity. Be proud.

  • Wow, you've been through it - well done for persevering. (my negative nature has always been a problem, bit of a tendency to say "If at first you don't succeed - give up!!")

    Didn't totally get that bit you said about the DWP filling out the forms for you?? D'you mean the appeal forms? - Anyway, I've had more than enough for one day, am off to watch Strictly results! xxxx

  • You enjoy it. Loved Georgia's Charleston last night, brilliant.

  • Hi, It's Fightback who offer support for filing out forms, can be contacted on either Facebook or main internet. Sorry if it wasn't clear.

    All the best,

  • (filing out forms part 2!)

    OK, the DWP are sending out forms, and on the letters they are asking if you want them, DWP, to fill out the PIP form from your DLA or ESA data. Of course you don't! The forms ask for different information and you must stay in control of your information, especially if you feel your condition has got worse since filling out other forms. Beware of "short cuts" they offer, you will usually end up worse off.

  • Good idea to see CAB as they can tell you whether you should have met their criteria or not, and give you assistance to appeal. However, having said that, the way the PIP criteria work, there are only a limited number of things they take into account and no matter how disabled you may be in other areas, if you don't tick the right boxes they just can't say yes to it.

  • CAB are brilliant at this, Just keep appealing they do not like it, but you have to, just keep going ,, hugs to you

  • I just wish they'd put one person who's had RA into each assessment centre as an advisor. I really feel for you. Big hugs.

  • You need to ask for a mandatory reconciliation and statement of reason get more letters form your doctor or resend copy's of the ones you have get letter of support from people that help you send them in for rc

  • Hi Scotslass333,

    I'm sorry to hear about your experience. As others have said, this isn't the end and you do have a good chance of success on appeal.

    Going to the CAB for support on the appeal is a really good idea. CAB a very experienced at the appeal process and they also have a good relationship with us here at NRAS so will get in touch if they need any condition specific information.

    When you get in touch with the DWP, it would be wise to ask for all the information the DWP/Assessment provider holds on you and that would be the best place to start an appeal.

    Did you have a face to face assessment? It is unusual to be rejected without one. If you did have an assessment, you can actually request a copy of the notes passed on after that meeting.

    As the Policy & Public Affairs Officer at NRAS, I lead on our engagement with the DWP and the private assessment providers to try and improve things for people with RA going through this process. If you could email me with details of your area then I may be able to raise the need for further training on understanding RA in that area. My email address is

    Please also feel free to contact our helpline on 0800 298 7650 for a chat.

    Best wishes,

    Conn O'Neill

    Policy and Public Affairs Officer, NRAS

  • Here is a HUG, praying!

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