Boring PIP

I have seen so much on here about PIP and it scares me. I got my dreaded letter today saying my disability living allowance was stopping and I had to submit a new claim. I was hoping I would be overlooked! Will I have to obtain more medical evidence from my doctors in letter form to submit with my application? I did this the first time in 2011 and I know it was a hard form to fill in then. I dread it. Will I word it right? Say the wrong thing? Have my benefit stopped? Yikes I don't need this now. Sorry to grumble but feel uneasy. Its like standing up in court trying to prove you are innocent. Not that I have had to do that thankfully. I have so many problems at this time and now this looms its ugly head again! I would rather sit down with someone and be assessed face to face than filling in cold heartless forms.

30 Replies

  • Stop and slow down, the best people to help you sort this out is the C A B as they seem to be the only charity they recomend. Give them a call and book an appointment, so dont worry to much because they know what you are doing. In between times, look at benefits and works, its on the internet and tons advice.

    I hope this helps you.

  • Thanks Philip. Yes I mustn't panic. I am being sent the form so will wait and see what it consists of. Then if I can't deal with it I will get help from the sources mentioned. X

  • Also start writing down all the problems that you have and how it affects you, the consultants that you are seeing and how often, any treatments you are attending, whether you are needing care provided by family, friends or paid carers and what assistance you need, I did this and included all my medication and doses and how many a day for my ESA and as well as filling in the health assessment on line I was able to send 12 sheets typed in addition to the health assessment form. I think by the time I printed it out hour and what evidence you can take it you enable them now to have to write but to add in as evidence and cuts down the need for them to write. If you have any Drs letters take them to be photocopied. Good luck, and remember what it's like on a bad day and how often these happen

  • Thank you! I have started a list. I was going to not include my breast cancer because I am in remission now but then I thought 'hang on' I am taking a drug for it still which gives me side effects like brain fog and tiredness so I am going to include that too. I am so spaced out on the numerous drugs I take I fell and cut my jaw open so I think its all relevant. When you start thinking its quite surprising just what we do endure every day. Thank you so much its such a help and gives me confidence to pursue it. I didn't realise I could fill it in on line. That may be a better option. 12 sheets! I bet they were too scared to write! X

  • Hi phone up the helpline and they will help you, there is also a good place called work and benefits online and they give you valuable advice and step by step help xxx

  • Thanks popsmith. I assumed the helpline would be biased and try not encourage you to claim a benefit regardless of whether you need it. The site you mentioned sounds a good idea. Many thanks. I am usually so strong but this turns me to jelly. I am so proud and having to ask for benefits is so frustrating. X

  • If you need help there should be no embarrassment for asking. We are known to be a very proud nation and try to do as much as we can, there are some who don't, but it is usually those who have worked hardest that fall the hardest. Accepting assistance to enable you to undertake personal care is embarrassing, but sometimes essential. If you didn't manage it properly then you become a bigger drain on the NHS and Social care. The sooner they integrate health h and Social care inst ad of having separate budgets, the sooner people will get better advice and support. Good luck

  • What Philip said. 🙂

    The CAB know what they are doing, if you can get an appointment!

    Good luck.

  • Thanks Ade

    Needed a common sense infusion and can count on it here. Thank you!


  • ...... & breathe! It is a facer Cathy, I understand that being someone who's never claimed anything before but once I got going with filling in the form (first application, not DLA transfer) it all just came out. It made me realise how different things are & what adaptations we'd actually already done around the house but as you've already form-filled for a benefit you'll be aware. I did mine over a few days (2 if I remember right) as my handwriting was becoming more illegible the more I wrote & I found it quite draining, my head was pounding. Best advice?... remember in some questions they're asking if you can do something safely, to an acceptable standard, as often as you need to & in a reasonable time, keep that in mind, that will help. Be honest even if it upsets you admitting, I did on one or two questions the more additional information I needed to give.

    Yes, you'll need to gather as much written medical evidence as you can. It says you only need existing evidence but some choose to ask for up to date records for obvious reasons. It will recommend who from in the guide but anyone really who you see for RD & any other chronic conditions, so anyone from your GP through to Occupational Health, Podietry, the more you have to support your claim the better I've found. A copy of your repeat script is helpful too, not acute meds, they're looking at what you take regularly.

    If you need help or you're struggling I found CAB very helpful, the person I saw knew which way is best to answer the multi option questions. For example questions which need a yes/no answering "yes, but..... or "no, but" or even "sometimes" isn't necessarily the better way to answer, they'll just take the "yes" or "no" & not take into account the "but".

    Good luck & if you have any specific questions or need further tips I'm sure those of us who've been through the process will help where we can. x

  • Oh thank you for your time and such helpful response. When I applied for DLA in 2011 I was about to have a mastectomy and I was in no mental state to fill in the form and a lovely MacMillan lady did it with me over the phone. It took over an hour! Now I will have to deal with it myself. I am wondering if I should still mention my cancer as I am in remission although still on meds. The RA is my biggest problem now of course so should I just ignore the other stuff? You probably don't know the answer to that but someone else here might have had same experience. Also I have started on biological drug now so hope that does not influence things in any way and they think I will be back to normal soon. If only!

    Sorry to bend your ear. Thank you.


  • No probs. I'm afraid I don't know whether your cancer & mastectomy would apply but PIP eligibility isn't condition based, it's how the condition affects you rather than the condition itself, which makes sense as no two people are affected the same. How I look at it as you're in remission (yay!) the cancer is out of the picture really, thankfully, unless it affects you some other way such as limits things you do or such, but CAB should be able to say for sure. This may help too when you look at filling in the form (choose country from the drop-down box). You'll see towards the bottom of the page there's "Getting free help from a support agency" click on the "+" & it reveals more info about getting help with filling in the form.

    Sorry I can't help more but as you say maybe someone here will know. x

  • Thank you. Yes I see it clearer now. Yes the cancer thing is not relevant now although it does limit the RA drugs as some are risky. But I get it now. Its all relating to what symptoms I am actually experiencing now and how they are causing me difficulties in my daily life. The links will be very helpful thank you. When I get the dreaded form I will contact CAB as well. You have a month to return it so I have enough time. Thank you again and sleep well. I love my bed! X

  • After thinking about the cancer aspect (and yay! Yes!) I have realised that whilst it is not a current problem I am on drugs for life and the drugs have rotten side effects i.e tiredness, brain fog etc. They also caused me to have to undergo a hysterectomy because the drug can cause womb cancer and I started getting cysts. That was last year. So my cancer is still having ongoing repercussions I think. I am getting more confident now due to all you lovely people on here! I am so lucky I found you. X

  • Certainly any adverse reactions from the meds you need to take should be listed in Q2b as that in effect can influence how you feel or cope on any one day & how they influence your day to day activity. So, to support why you're taking them the cancer needs to be listed in Q2a with the addition it's in remission, meaning whilst it's not a disability in the same sense as RD, in that sense of the word it was a health condition if that makes sense? The hysterectomy was also a direct result so again should be listed to support your daily meds. Also any other checks you need to have as a result of your cancer treatment, such as bone density scans (DEXA) should need to be included somewhere I would think. x

  • Yes it makes sense. I am making lots of notes as I think of them. I have got a CAB appointment on 1 sep to get them to give it a final look over. I have masses of old and recent paperwork from doctors so not worried about that. Plus they said they refer back to my first DLA application if clarification is needed. Have a lovely weekend and enjoy the sunshine. How are you keeping BTW? You are much more effected by RA than me. X

  • Have you received your application form yet, I'm not sure if you mentioned though you may have & I've missed it? It's only that 1st Sept is 26 days away & there's a limit of a month from the date it was sent to you & don't want you to panic filing it in. Good idea about making notes, my h jotted down all the things he helps me with & I was surprised just how long the list was when he presented it to me once I'd received the form & started on it.

    It's a beautiful day today & we have open air concerts all weekend so been lucky considering! I'm not too bad thanks for asking. Messing about with meds at the mo & in limbo a bit but have yet another nurse appointment in a couple of weeks to talk through other options (not holding my breath about that though!). Have a good weekend. x

  • I only got the notification letter last weds and am awaiting the form to come which can take up to 2 weeks. That appointment was earliest available with CAB so have to see how it goes time wise.

    Oh that sounds good enjoy!

    I totally understand the meds thing. These immune diseases are not an exact science sadly and its hard time consuming work finding that just right drug. I really hope you get there soon. X

  • Oh good, I had a horrible thought that you'd received it & leaving it late as you've an appointment with CAB on the 1st!

    I've done really well for 6 years so can't complain. MTX has been good for me but I don't tolerate higher than 17.5mg too well so it's finding an add on that works without the side effects I've had off SSZ. It's the last 3 years that's taking it's toll, mainly my feet so fortunate in a way but it's the not seeing the same person twice & my Rheumy for nigh on 18 months.

    Bryan Adams tonight so all the worries of the world will be forgotten for a while! x

  • I'm was like that worked all my life , done six years in the army for queen and country paid all my taxes so now I need help I'm going to ask for it hope y get on ok

  • Thanks! I just think this changeover from DLA to PIP has been set up to route out any skivers who are getting these benefits so you automatically feel feel they are vetting you for that reason. It just makes me squirm. But I know there are many of us who really need this help. Hope you get it too.


  • I agree to book an appointment with CAB. As far as medical evidence goes, what I always do is make a summary of what I put on the forms in each area and give that to my GP - Doctors understand what is medically wrong with you, but they seldom take the time to understand how that affects you in terms of disability - unless you actually tell them. DWP needs to know about the disability level, so if you want the medical reports to be useful, make sure you have had a discussion with your doctors about your level of disability (and leave them that summary of your PIP application so they can refer to that when they write their report). I have heard of lots of people who have dipped out on the medical report because even though the doctor has confirmed your illness, the doctor hasn't known things like the distance you can walk, the difficulty you have with dressing, getting out of bed, etc, and so has to write on the report that they can't confirm that, which to DWP means you can do everything.

  • Thank you. I do feel confident that my gp knows enough about me and my problems now but your suggestion is a very sensible and useful one and I may well follow it. Many thanks. Every tip is so useful.

  • Hi,

    I have attached the link below to CAB site re PIP claims

    I have recently been through this process and despite sending numerous specialist letters I have been turned down for PIP care and only awarded standard mobility so in the process of appealing. I would recommend getting help with the form amd getting a letter if you can from your GP or specialist addressing the needs that you have for personal care and mobility (bearing in mind the guidelines for PIP care and mobility components) . When you have your face to face assessment I would get someone to go with you and ask if you can record the assessment as even though my husband took me and I was in my wheelchair and could not walk they said I got out of a chair unaided and walked over 20 metres. Had I known before that I could tape it maybe I would have had better grounds to dispute the assessment and the untruths in it. In saying all of thi though I would try not to worry as I think I had a bad experience and I am sure that not all assessments are like this. Be prepared and good luck.

  • Thank you for your help. I really appreciate it. I am getting DLA already but I only get the minimum amount. I am nowhere near as bad as you and am still able to get around on my burning feet! I don't expect any higher grade awarded just what I have already. I need help with general things but not sure what is covered. Living alone is quite hard sometimes dealing with things but I prefer to do what I can myself. I need to get advice on how to claim so your link is great thank you. I am so sorry about your experience and it makes me angry. They treat people like malingerers and I wonder if they get some sort of level of reject quota they have to conform to.

    I hope you appeal and get the decision reversed.

    Cathy x

  • Thank you Cathy. i think you are right re rejection quota, the lady I saw was very pleasant and said she was not medically trained but disagreed with what I said about how my RA affects me and did not appear to take any notice of the reports I sent in. The whole system is wrong since when did a lifetime award become a ' oh until we decide its not award '. I was told that if you need help the majority of the time (whether you get it or not) then you should be awarded PIP but check out the questions and points system to see where you are and what they will be assessing you on.

    good luck Donna x

  • I filled my form in myself, I sort of decided I wouldn't get it anyway so didn't bother even looking up things on the net. I just filled it in with the truth, completely lost the letter from my Rheumy so sent in an old one from a few years ago from a different Rheumy at a different hospital! I also had my partner write a letter telling them all the things he had to do for me. I ended up getting the higher level mobility (no idea how I managed that) and lower level care. I didn't even need to appeal. It almost seems to be pot luck whether people get it or not but if you don't just keep trying! Good luck. xx

  • Well it was your lucky day! But glad for you! I have looked at a helpful link and think I will try myself although citizens advice bureau has given me an appointment in a months time to just give my form a final look over. I worry cos I live alone and don't have a carer so will they think I am not so bad. I have bad times and constant pain but I just carry on. Oh well as you say its a lottery. Many thanks for replying!

  • Article in Wednesday Guardian 10th August 'biased' fit for work tests penalise poorer people'.

    Basically the poorer area you live in the less chance of receiving E.S.A. Alternatively the wealthiest areas are most likely to receive higher benefits

  • Well that doesn't surprise me. But I would like to know the reasoning behind it. Is it because people who are not so well off are assumed to be more likely to be malingerers in their opinion? Or are the wealthier just better at making claims and more get through. Interesting.

You may also like...