Scared of losing my DLA

I am due a visit very soon by an assessor for the change over to PIP and I am scared that they will take away my DLA. I don't know what to expect but I somehow feel they are coming to catch me out and it's a horrible feeling. You hear of so much talk about wanting to reduce people's benefits or the government wanting to take them away, I am very very upset at this prospect. We could not survive without the money. What do these assessor's do? They are coming to our home, do they judge you on your home? Do they judge you on making you climb stairs? I am frightened that my life is about to be turned upset on top of suffering with rheumatoid and osteoarthritis. What is anyone's experience with this system? Please help.

24 Replies

  • I had mine done before Xmas and the lady I had was lovely didn't judge me at all really sympophetic like to c how u walk what aids u use and what help u get etc I got mine ok but I know the feeling it's horrible I was the same but I was lucky and had a nice lady couldn't of asked for a nicer one and she came to my house just b honest with her she will want to c ur medication any reports u have

  • Look through your form againso you remember what you said . Also look at the benefits dwp site and see what they award points for.

    My lady was lovely and even so I answered truthfully however didn't jump in with " fine" when asked how are you? You have to overcome embarrassment when asked about dressing and toileting and if sometimes e.g. You can't do the stairs apart from on your bum , or you sleep on the couch , then you have to be honest .

    I was told to talk about my worst days in general.

    Good luck and don't forget to ask for the phone number to get a copy of the report( you can phone to get it a few days later and it was really handy I found.)

  • if anyone is going through benefit changes and are confused the check out this web site. they will help you.

  • Yes ditto this is a great site for advice

  • I have not had a bad experience with an assessor, the lady that came to me ran through the questions on the PIP form and asked me a few more questions on how i coped. Like most things in life it wasnt as bad as i imagined it would be.


  • You're not alone I'm afraid Jessiepuss. The changeover is a very real concern for so many, especially those who understood, rightly at the time til the Government decided they needed to hit the disabled to save money, that they had security for a long time to come.

    I'm not one who is involved in the changeover, PIP is my first benefit, but I've stayed abreast of how it's panning out, as much as the Gov & DWP will allow Joe Public to be anyhow. Neither did I have a home assessment but reading about those who have it seems fairer than those like me who had to attend an assessment centre, I don't think I've heard of anyone having someone who wasn't nice. From their experience, & I'm sure they'll share first hand their experience, just do as they ask as you would normally navigate your home. I don't recall hearing of anyone being asked to climb stairs but all I would suggest is if you need to just do it as you normally would, you've nothing to hide so if like me it takes you a good few minutes then climb them as you would normally.

    I've heard some have their meds to hand, even if they secure them away normally, it saves fumbling for them all if asked about them. Don't offer to make a brew, though if there'll be someone at home when you have your assessment of course they're at liberty to do so if you wish. I'm sure there'll be lots more info members here can share, I've just mentioned a few hints I could remember.

    As you've completed the application form you'll have realised PIP is more complicated than DLA was & the options more involved. The walking distance option to qualify for higher points in the case of PIP is less (less than 20 metres) so you need to ensure that you can do what you claimed, that means according to the descriptor "safely, to an acceptable standard, as often as you need to & in a reasonable time". Be aware if you get up to walk, the assessor will be noting down what he or she sees. They're not so much trying to catch you out but observing & anyway what you've signed is the truth so there's no catching out to be done is there, just try to act as you normally would in your own home.

    I hope it goes well, you're not under scored & your award is what you'd expect for your current needs. Remember you can ask for a copy of the report from the DWP, give it a week or so though to give them time to process it first. When you receive it go through it carefully, it has been known that shall we say inaccuracies have been known to be found in the assessor's report.

  • Pip is a funny one. Like you NMH, it was my first benefit. As I work, I didn't even know about it until my gp told me to apply for it in order to make things easier for me - travelling etc.

    However, unlike some I just have been lucky as I had to go to a centre for my assessment (there for some walking involved) and she asked me to do a few exercises, which I refused as was in such pain. She also asked me to describe a good day - I said I didn't have good days, just slightly less bad perhaps.

    Anyway, all was fine and I was awarded higher level of both care and mobility .

    However, this was pre having both hips and both knees replaced ( and further surgeries) and there's no doubt I am better on my legs than I was when initially assessed. I can walk Easier although not far as become breathless and my knee can buckle. I also get quite light headed so tend never to go out on my own much.

    I guess I'm wondering what re assessment will mean for me. Whether they'll assume that because Ive had such surgery, I no longer have AS and Arthritis? That I'm cured and as such, become one of the "undeserving" - time will tell I guess .

  • I'm not sure I can answer your question or reassure you Marie because I've not been reassessed yet, my award runs until next year so I don't expect to be invited for reassessment until later this year. Neither have I had any joint replacement ops but I can say your PIP award is relative to how your condition affects you not on which conditions you have. So, in theory, having had replacement ops should have gone some way to improve what you'll have listed as problems in your previous form, if they've been successful that is. Your conditions haven't gone away as a result of having joint replacements, both are chronic but you may be managing a bit better with shiny new joints, that's what may be considered in your new assessment that's what I'm trying to say. So it's down to what you claim when you're invited for reassessment, if you do indeed manage better & possibly don't need to list much of what you did in your first one because some should, again in theory, have been resolved from having your ops, that's how I see it anyhow! Basically your life should be easier now, that's how I would think the DWP would expect you to be. I would think your award lasts for a little while yet though doesn't it? But, as you say PIP is a funny one so who knows?! x

  • Thanks NMH.

    Theoretically, you're right. Because of the new joints, I don't have the same pain in hips or knees. It I so have pain in the muscles around them and my knee buckles unpredictably and I can fall, this leaves me vet unconfident at times. However, they're still far better than before. The biggest thing now with my mobility is my feet. Walking remains painful and I can't walk very far at all. I have had recent surgery in one foot but unfortunately, this hasn't been successful and four of five toes remain broken so it looks like further surgery. In terms of the care element - remains a nightmare. Struggle to open things, chop things, safely lift things due to deformity and swelling in hands. buttons etc undoable! Equally wasting hair , bending due to fusing in back and neck and pain in elbows.

    I know There's more surgery ahead and figure once they've replaced everything, there should be nowhere else for the disease to ruin but I'm still a wee bit off from that yet and although hips and knees better, the rest of the body is sometimes (a lot) a big bag of pain and just doesn't do what it was made to do.

    Onwards and upwards though, pip or no pip.

    Hope things are well for you.


  • Seems to me you've still reasons enough to qualify for one or other rate Marie but as with most things in our RD life you can only try & you don't know until you do?!

    I'm not too bad thanks for asking. Had an interesting day, went to a Clinical Research Centre with my h who's considering enrolling in a stage 3 double blind trial for a new diabetes med, that was v interesting! His GP recommended him for it so he thought he'd go & see what it's about. He goes again next week for a full medical & baseline bloods to determine if he's a good candidate though we're having our doubts now he has more info because the drug takes the sugars from the kidneys & he's under Endocrinology & having tests as his creatinine kinase levels are silly high. We'll see what happens next week.

    You're generally ok?

  • Wow. I always have a lot of respect for People who enter trials of any kind - the fear of the unknown always puts me off. If a suitable candidate, I hope it is very positive for him. I do wish you both well going forward.

    Although it is very good to have pip, because I work, I wouldn't be left in too bad a position if I didn't get it. Guess it just helps make Things easier but I'm always aware there may be many people out there more in need than me? What will be will be.

    I'm doing ok (generally) , thanks. I choose to remain as positive as possible through it - a challenge at times, admitably !

    A few weeks ago whilst at the opticians, they discovered something behind my left eye so Ive got an appointment tomorrow (5.30pm!!) to check it out - just hoping there are no needles involved!

    Take care and once again, thanks for the response

    And helpful advice.


  • I think PIP is helpful for many, every bit helps doesn't it? Disability aids usually don't come cheap which is criminal really though I use one site regularly,mother have an extensive selection on most things & quite a bit cheaper on some.

    I hope your eye appointment & exam shows it's nothing to be concerned about. Let me know how you get on? x

  • I would say you are being very kind with the "inaccurancies", I have given up being polite about them these days and will say what I know.

    As for the original poster, follow me and my posts as they have a lot of info about the process, 3 things to remember, preferably both of but at least one of the first two items and they cannot force you to do anything beyond that which you can;

    Ask for it to be recorded

    Take a witness with you

    Don't do anything you can't, you are not there to impress.

  • Hi all I'm new here and don't know where to post anything yet sorry. Anyway my query is about PIP. My wife's DLA is ending and she had to apply for PIP. So I made the claim on over the phone on her behalf and they sent me a pip claim form and I filled it in for her and she signed it. Now my main worry here is that I had a text message from the DWP yesterday saying they haven't received my wife's claim form yet. I posted it on the 18th of January. I phoned them yesterday and they said ring us back on Friday the 27th to see if they've received it. We are worried because the cut off date is the 3rd of February. Can anyone please give me some advice on what to do next.

  • Welcome Jon. Panic not, just yet! We usually recommend returning application forms Special Delivery or Signed For so you can either track it or check online for when it was delivered, I don't suppose you sent it by either of those so you can check or you've any proof of posting? Alternatively if when they call you on Friday it's still not been received you can send a copy of the copy you made before returning the original (assuming you took a copy that is), if you send it 1st class Signed For it's supposed to be guaranteed to be delivered by the next working day. Failing all of these & depending if they can send a replacement off the same day you could fill that one in again promptly & return it again 1st class Signed For. Alternatively if they don't think the replacement would be received in adequate time the only other option would be to ask for an extension & for them to send another form, either way a pain I know but needs must. It's a pity there isn't a downloadable version of the form for circumstances such as these but there isn't unfortunately.

    If you'd like to start a new thread tap on the green box on the right hand corner of this page Write a post & that will give you the template.bit might be an idea to do so, you're likely to receive more responses.

  • Thank you for your swift reply nomoreheels😌 I didn't know anything about sending it by special delivery at the time of sending the claim form until I read the forums unfortunately:( and yes I did photo copy the whole form and I didn't know I could send that to them if my original form hasn't been received. So I'll wait till Friday and phone them to find out if they got claim form and if not I will ask for another one and copy off the photo copied one and send it by special delivery. We were both shocked yesterday when that text came through saying they haven't received the claim form yet. And we were late sending it I guess but I thought it would have got there by now.

  • Having slept on it I'm unsure if you can indeed send a copy of the report. I've had a quick look this morning at online & can't find any evidence which suggests you can, in fact nothing about if the DWP say a form isn't received by them so I may have given duff info there! So yes, best to see what DWP says on Friday. I hope it's not a problem & they'll send you another so you can copy directly from the photocopy you kept. I was also quite late sending mine, I kept putting it off as I was waiting for one more letter of evidence to include, I think I'd a week to the cut-off date though DWP must have received it in time as I didn't receive a text. That reminds me, remember to include copies of written evidence from med profs & any other copies such as repeat prescription, weekly diary etc. Good luck for Friday.

  • Thank you for your help and advice nomoreheels. I'll be ringing them today and I'll let know what they said.

  • Fingers crossed they've received it so you don't have to go through form filling again, I know how lengthy it is, had to do mine over a couple of days as my writing was becoming increasingly spidery, even I had trouble deciphering it!

    Do keep us updated.

  • I rang the DWP this morning and they have received the claim for and they will be in touch in due course about a face to face and now we just have to wait. Although I did have visions of having to fill in another claim form:( my writing is very bad sometimes through me having arthritis in my hands and my writing is very spidery at times. Anyway I'll keep in touch with you nomoreheels. I'll be in touch soon as I hear any more 😌

  • Oh that's good news, I'm sure that's a relief! We can only hope they don't keep your wife waiting too long for her appointment date. Sorry to hear you also have arthritis in your hands, no fun is it?

    Yes, do keep in touch. It may help her to prepare for her f2f asking here for our experiences once she's received notification. Take care.

  • Offer her a cup of coffee but tell her SHE will have to make it herself cos u cannot & say plaintively that u would LOVE one too if she could make it for you

  • Good idea, if Jessiepuss claimed that she's unable to make a brew.

  • U just have to tell it as tho it's your VERY worst day

You may also like...