This PIP thing - I need you again!

Hi everyone, one week on from getting the letter with the PIP decision, and I don't suppose it will surprise anyone with RA that the added stress of trying to cope with this, on top of looking after myself, has made me flare....I'm hot and sore, and STILL trying to do everything on my own, as well as hours of paperwork now. In other words, I can't even BE ill, becos there's no-one in the house to "look after me" in any way!!

Anyway - the bit I'm wondering about, that any of you who've already been thru the PIP claiming might be able to shed light on, is this : (and apologies if its all a bit garbled) - In the letter they sent me, there's a secion called the "Decision Maker's Reasoning", ok? She (and it is a she) goes through every point, and explains why she considers I am not in need of help..... towards the end of this statement, she has put "I cannot consider any help you need not covered by the activities for daily living and mobility, including housework." Now, for me the whole point is, that if I DIDN'T HAVE THIS ILLNESS, I would be able to do all the housework, as well as everything else, myself!! AND, at the beginning of the NRAS booklet on claiming PIP, there is a list of examples of the kind of thing you can use your PIP money for : like, Getting the windows cleaned, getting the ironing done, getting the housework done, getting a taxi to shops, etc. etc. !! So, what do you think? How can I challenge the DWP decision, if they won't accept that I DO need help in the house?? She has alrady stated clearly that she cannot consider any help I need in the house, so I feel there's no way to argue with that. Or is there? When you're coping with "daily life", and this illness, totally alone, then housework is ****** well part of MY daily life!!! I don't have the luxury of a husband/partner/daughter/son/sister/cousin/ or even a sympathetic neighbour, coming in and providing "help", or "care", or whatever you want to call it. And I need that.

So, shall I save myself even more stress, and not even challenge them on the 'daily living' bit? No matter how supportive a letter I get from my GP or anyone else, if they've already said they won't pay me to employ someone to help with "housework" !!! I can't argue that I'm incapable of "preparing a meal", or "dressing myself", or any other of their daily living criteria. I'm just exhausted and permanently stressed and alone, - oh, and I have RA by the way......with crippled feet.

Do any of you have any thoughts? Thanks again. xxx

16 Replies

  • You APPEAL and don't give up

  • Apeal i have i got ostes ra knees and feet om waiting 4weeks now can go into 56 days ive been told by pip it will take 6/9 weeks so im the same as you ... i wrote a four page letter with all my struggles... DO IT AS YOU MUST.... dont give up... and then sit back for get about it... ive rang them twice all they say is ONGOING.... OK thats it ... forget relax chill... write everything to how you cope.... nothink to lose but the truth... you ARE STRUGGLING... YOU ARE ENTITLED TO BE HEARD....GOOD LUCK I LET YOU KNO MY OUTCOME... EVEN THOUGH ITS TAKING A WHILE... JUST ASK FOR A RETHINK IN YOUR LETTER....YOU MUST GOD LOVES A TRYERXXXXX😉😉

  • Thanks dawniee! You're right God does love tryers, especially as I only told the truth in first place. Hope you get good news too! S.xx 😎

  • Yes hun they turned me down too so im on my own ive sent in gp letter and he agreed im struggling cost me 20 pounds for letter but they are looking at it again go for it... dont give up please mine is taking longer but i known new evidence from gp say im housebound is go for me ... do it ... please... get gp letter...

  • Ive also got my o.t. involved she is supporting me... go and get a letter from them they have visted me and agreed i need a carer go..for it.. im also have problems with esa group my cab have now got me appointment... please dont give up.. can i ask have you got outpatient appointments i now have two .. with twelve weeks of insisting just dont give up... ive had a fight on my hands... but im on that much pain im writing letters and its helping me... i quote GOD DOES LOVE US ALL....XXXX

  • You really need to put in a appeal against their decision.

    Talk to your GP and RA Specialist or Nurse and if they agree you need the benefit and assistance they will stand by you.

    Ask for a visit from the Occupational Therapist to visit your home. Your GP will arrange that for you. They will asses your movements and problems getting around for kitchen, baths, and bedroom and getting around outside. All this can assist in your appeal.


  • Hi Scotslass,

    please do consider appealing. Once awarded it is none of their business how you spend the money to help yourself.

    As far as the dressing and eating bit is concerned. It clearly states that you should be able to do these activities in a safe manner and in a reasonable time. They obviously have not taken into account how difficult these things are for you to do. People find a way of dressing and feeding themselves but it may also cost them more money to do this and take an unreasonable amount of time. Having to buy expensive ready meals to put in the microwave or adaptive clothing. This extra cost is one of the reasons PIP is there for.

    You are doing phenomenally well. I'm sure the people on here have other tips for you.

    Best wishes


  • To help form your reasons for requesting mandatory reconsideration you need to look again at your copy of the application form & compare it with the assessor's report & the decision makers reasons as to why no points were awarded. Roughly note down (question by question from Q3 to Q12 wherever there are anomalies) reasons where you consider the decision maker's reasoning is incorrect, how it differs from what she thinks you can or can't do or manage within the descriptors & where you think you've been misunderstood by the assessor in all each of the options you ticked & extra information you gave at the end of each section. How do they differ? Do you think you may have unintentionally provided information that could lead the assessor & the decision maker to think that you can do more than you actually can?

    You, I & everyone here understand how you struggle Sheena but my concern is that because you live on your own they have presumed that you can cope, that you have to find a way because you've no option as there's nobody to help you. That obviously isn't the case, ok maybe you can make a meal but some days are you like me & just not safe with a knife? I sawed through my thumb the other day with a Kitchen Devil my h bought for me because he thought it was safer than his kitchen knives! Also much depends on how you worded any additional information you've given, could it have been misconstrued or twisted do you think?

    As CAB can't send someone to go through things with you maybe you could contact the Welfare Rights Benefits Advisor, have a look online for your local one or if you phone your Council office they should be able to put you through or give you their phone number. They were really helpful for my h's parents, his mum especially (we were still living abroad & his brother was as much help as jelly wellies), they came round to the house & knew what help was needed & helped fill in forms, in fact I think I'm right in saying they filled them in for him.

    Have a read through this Disability Rights UK Fact sheet for more help.

    I hope your flare passes, it's unfortunately not surprising, it's stressful at best. x

  • Ta for that. Haven't received a copy of reports etc. from DWP almost 2 weeks of the 4 gone already! I phoned them again yesterday and they said"No, not been despatched yet". Not much I can do but wait. My gp is doing a letter, so hopefully that might save me a bit of work - once I see what he actually puts! Ain't life grand?!! It's nearly snowing up here today, by the way - will be by night! ⛄ xx

  • It might be an idea when you do receive a copy of the report, if it goes to the line, to ask for an extension to submit your reconsideration request. It's actually quite a valuable document for you & your application & not having it to refer to is holding you back from completing your request, like your application it's not something you can rush. Meantime you can note down reasons you disagree with the decision makers reasons & then once you've received the report add in anything you think has been misunderstood or misinterpreted. I hope your GP's letter covers all you have issues with, did you not ask for one to send with your application? Anyway, he has all you records so hopefully it'll be a good one.

    The temperature's really dropped here. Sudden downpours one minute then blue skies the next because the wind is really gusty. I wouldn't be surprised if they've closed off the prom. You keep warm & I hope the snow doesn't settle. x

  • I'm afraid the decision-maker is right that needing help with housework is NOT taken into account, and I'm afraid that I've thought for a while that the NRSA guidance was misleading and could do with updating. You are assessed on the problems you have with quite a strict range of tasks - the ones they specifically ask you about in the form - including getting dressed and washed and preparing a meal. Anything else you struggle with - notably housework - is irrelevant as far as the PIP assessment goes, however much trouble it actually causes you in real life. I agree it's unfair, and it affects me too (I'm a single parent with two teenage boys whose 'help' is a bit hit-and-miss), but them's the rules... :(

    But don't give up hope. It may be worth appealing, still. Beverley is right that the PIP rules clearly state that you should be able to do the specific activities in a safe manner and in a reasonable time. So for example, if it takes you longer to get dressed than 'normal', or you use special aids or adaptations like front-fastening bras or sock aids or shoe horns, then you should score some points for that. Or if you can't lift a full kettle and have to use chunky tin-openers and other special gadgets to cook, you get points for that too. But I do think it is quite difficult to get the 8 points you need to qualify if you struggle just a bit with a lot of different things rather than having an obvious disability like a missing hand or something... And I found it very depressing having to think so negatively about all the things I can't do or struggle with, when generally I try so hard to focus on the positives and *cope*...

    BTW - Once you qualify, you can use your PIP for whatever you want, including paying someone to help with your housework, if that's what would help the most.

    Good luck!

  • "I cannot consider any help you need not covered by the activities for daily living and mobility, including housework."

    That actually means that they CAN only consider you for help you need to do with the activities for daily living and mobility that they asked you about on the form. If things you have difficulty with are not covered in those questions (and that includes housework) then they don't consider you for help.

    While you can decide to use PIP money for getting housework done, not being able to do housework doesn't actually count when they add up your disability points. Its only things like getting dressed, personal hygiene, toileting, feeding yourself that count in their eyes.

  • Yes I do know all that! - but equally they shouldn't just base their decision on how I "looked" to the assessor, while I sat on my sofa for 2 hours plus, talking. Which, incidentally, because of the fatigue I suffer, wiped me out so much, that I did NOTHING for the rest of that day. That's not a choice, or laziness, that's caused by the RA. I got up and threw something in the microwave for my evening meal, but certainly couldn't have cooked! Again, the NRAS booklet says they are not supposed to base their decision on a 'snapshot' of how you seem to be while being assessed. Which is exactly what they've done! I'm getting another letter from my consultant who was amazed that they'd ignored what she wrote in the first one, AND my GP is also now doing a very supportive letter too. They all know the full extent of the pain/fatigue - which I very clearly described on the original claim form.

  • Oh yes hun i had to refer to my original application to them has they had made several mistakes to questions i had answered but they had twisted my words to there way of thinking... not good as to be correct and trueful to my disease im atruggling ALONE... ITS HEARTBREAKING.. my son insults me says im a embaressment to him ... and makes me cry... i have no support from hun... helpless.. but my faith keeps me going.... but yes we must soldier on...iys harder without help... i agree but you must find ways and aids to help youxx thank you for response im new on here.....

  • Oh bless you dawniee, I'm so sorry you're having such a hard time too, and on your own - it was good of you to respond to my list of moans!

    Everyone on here understands, they're great. I'm sure if you wrote your own'post' you'd get heaps of replies too.... I'm so glad your faith keeps you going, it's true. I don't bang on about being a Christian on here, mainly becos I don't really think it's fair to others, plus when you're writing instead of talking, things can be misunderstood. (There's also the fact that I don't think I'm making a very good job of being one throughout this whole illness - we're told to "rejoice in our sufferings", and I don't do a whole lot of rejoicing, as you might've noticed!!) But there is absolutely NO doubt in my mind that I'd never have got through this last eighteen months without my Bible. God will never leave us or forsake us, we just have to hang on, even when it's hard.

    Well today's mail has been, and NO letter from my GP, he said he's do it on Thurs, but I dare say the typists just haven't had a chance to do it - or else he's forgotten! Was really hoping it'd come today, so I'd see exactly what he's written... Oh well.

    You said something in one of your replies about esa - are you supposed to be holding down a job, too?? Seems a bit unfair if so. Fortunately, I'm over 60 so they can't force me to work.

    I'm sorry your son isn't very understanding or helpful - believe me, I have a kind ofsimilar situation and that's all I'm going to say on that subject.... I definitely AM leaving that one for God to sort!

    Don't be upset if I don't get back on here today with any more posts/replies, just got too much I need to tackle today. Take care,

    and remember to try writing your own 'post', you'll probably hear from others who can sympathise. Lotsa love and hugs. Sheena xxx

  • I am so sorry you feel so alone and rejected. Please appeal. Unfortunately, as with everything worth having, you have to fight for it. Those who shout loudest get what they need. If they turn you down next time, try again and don't stop until you get it. I am sure you will in the end. Good luck x

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