diagnosed in september 14, refused PIP. feeling low.

Posted , 39 users are following.

I was diagnosed fibro in September this year after baffling doctors with the condition I have since I was 13. I am now 21. After years of being pushed to one side and being told there was nothing wrong with me, or it was growing pains I finally had an answer. In august I first applied for PIP and in September I was finally diagnosed. I've been through lots of different examinations and tests to prove or disapprove conditions, I have also been on a lot of different medications until finally I'm finding gabapentin is doing at least something to help. After waiting from august until now (December) I was hoping people would realize how much pain I'm in on a daily basis and how much help I need. But this morning came the letter to say the DWP does not think I'm entitled to PIP. They seem to think I can dress and undress muself , although I physically need someone to do this. They also think I am capable of washing although, if wasn't to have someone to help me into the bath, I wouldn't be able to wash.

Sorry for the rambling I'm just astonished people can apply and be successful in recieving PIP when they're in no pain, but because a test proves they have a condition, they are automatically given it. With us with fibro, its like no one believes we have it or the severity of the effects on our body's.

I'd like to hear a few peoples opinions on the subject and whether anyone's actually been successful in claiming PIP. I will be appealing this decision and hopefully something will come about this.

4 likes, 115 replies

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  • Posted

    Hi there

    I am going for my P.I.P. assessment on Monday for Fibro & Degenerative Disc Disease...I am really nervous truth be told....btu then did anybody watch the Benefit programme where the guy sold u his electric wheelchair for £60 cos he "supposedly" needed the cash! Then bought out his pawned silver for £70 he walked for ages to get his giro using a walking stick he didn't even seem to use. Then went for a p.i.p assessment (after waiting for 10 months). & actually got it! I worked out he would had received £5k....5K ffs. And all because...wait for it......sciatica in his back! Don't get me wrong this can be painful.....but "no way" after listening to everybodyon here!....should he have got it! #DISGUSTED.....I will be very suprised if I get it...but I will certainly appeal as if it wasn't for my daughter and hubby I would be really struggling....thanks for listening.

    • Posted

      Hi there Jacqui,

      I haven't seen the programme you mentioned, but many of these 'reality shows' do not expose the whole truth, they will record what they want and anything else get's left out. There is 2 newspapers and 2 TV channels that do this, just to get peoples reactions, of course backlash may come from other sources if they can get that far in to the "media chain". There was a woman here that was on benefits and had a large family, but there was a lot that was edited out for TV purposes and not to go in much detail. The best way is always find out news your own way, and forget targetted media that makes things look good or bad, because that's how they want it portrayed - and you to believe it.

      I'll give you a few tips at a typical PIP face-to-face interview:

      If you feel that they are making out you have no issues that would warrant any PIP awards, then ask them to stop the interview. Do not let them think they are better than yourself, which does happen in some cases. Please do not go to the interview with a negative 'mind' - this will go against you, but there is a reason for taking a 'negative' attitude, which I will mention shortly. If you have problems which occur daily, then write them down on a piece of paper, the more you have the better.

      The system uses descriptor points, knowing the thresholds of various tasks would have its advantages, then again knowing them and applying them to your condition, which is what you really need would be cheating the system.

      Your mainly awarded not just from the application form, in fact if you ask me that is the easy part, if you submit correctly - some organisations will help you with this, or even people on here. That form as many multiple choice questions, even though they may look similar, they are not (some require very detailed answers, which is where many people get confused!). Answering YES or NO to various questions would also place your application on the borderline of being accepted or refused! Being refused on the initial stage of PIP, DLA or even ESA, makes no difference - they all follow the same rules in an Appeal, which at the moment does have a high turnaround - (Appeals mean more time for your application and DWP, they are that far behind at the moment with Appeals, most are getting through with no face-to-face interviews. The reason for this is ATOS  is being bought out by Maximus, a US based health board with a worse reputation that ATOS). So, the backlog needs to be cleared first before Maximus take over. As I pointed out in the 2nd paragraph - if the first application fails, whatever you do, DO NOT GIVE UP! - this is what they want you to do within the 28 day period to appeal, also note I'm not sure if you know this but you can ask for an extended period past the 28 days, if you need more time to collect further data, e.g. a diary of the past 28 days and how your condition makes certain chores impossible or nearly impossible to achieve. The longest extension as far as I am aware is 6 weeks.

      Forget about much back pay is accumulating, this is always paid back anyway - what you need to concentrate on is your Award and winning it. The most difficult descriptor to get is the High Care, and you need a partner to be helping you through the night. 

      Most awards on the descriptors are worked out by times and distance, the Mobility one seems difficult and going by what you said in your message. If you can walk unaided then obviously you would fail the test, however if you walk with a stick under 20 metres and need a break, maybe because your out of breath then this would put you in the lower Mobility Descriptor.

      If you need any help let me know, I will gladly help you out.

      Regards,

      Les.

       

    • Posted

      Thanks for the reply Les

      I did the online pip assessment last night and passed with flying colours and that was only doing it with when I am a bit more able to do things!

      I'm not nervous anymore as what will be will be...I'm not saying

      That I will sail thru tomorrow. obvz...but I'm not going to lie...I couldn't if I wanted to...I'm not like that...but I have my daughter coming with me and that's all the support I need...as she knows me better than I know myself and can see all the signs of when I'm not duin okay and I pretend to myself..."I'm fine"

      I will let you know how I get on....but I'm not sure how long it takes before I will find out!

      If I do not get it then I will have to go back to work...until I make more mistakes and I'm sacked!!! Hey ho...

      H.R. from work have just sent me a form to fill in to request all my doctor's notes! I said I didnt mind as it will be 6 months in January that I have been off on long term sick...I don't even get paid when I am off and have had £72.40 a week from e.s.a...at least its something...thanks again for listening...x

    • Posted

      Hi Jacqui,

      Welll, I will wish you luck for tomorrow. I noticed you mentioned your doctors records request was to January, is this when it all started? Some people don't notice anything wrong until later in the disease, which could be noticed in some cases and not others.

      Things you should consider that any extra information you can give them on the day, which you omitted from the original claim - would benefit you.

      Highlight any current treatment that has changed since your initial claim.

      Any medication changes or herbal remedies should be noted, this gives them additional information that you are trying to make life easier.

      Any test results awaiting from hospital you need to notify them of.

      And of course your symptoms, these vary from person to person - what suits you may not suit anybody else. Don't let them do things that you find impossible to do, as this will go against you.

      Obviously, if you need help throughout the day - note down whom provides this care, e.g your husband at night, if so how many times and approximately how long, obviously if this is more than once, and intermittent tell them this - if this intemittent then state it. If the overall care required at night is more than 20 minuites then this will get you on the descriptor care rate

      Having your daughter with you would benefit your claim because she can back you up. With her informing them that she helps you multiple occassions throughout the day.

      If they ask can they have your authorization to access your hospital records then let them, this will show them how often you see consultants which can greatly improve your case.

      If you can manage all of the aforementioned then you can expect an Award possibly within 4-8 weeks, the more information you  give them to deal with the better your chances become.

      I have high rates on DLA & ESA (Support Group), but I have a lot of disabilities that I have to live with, and believe me I would gladly drop all benefits and pain to work normally again, my problems stem right back to my early 20's and an accident. I went out last night to a 21st birthday party, wheeled in by my son in a wheelchair and drinking pepsi in plastic bottles because I am unable to hold glass of any kind. We had been there a few hours and all of a sudden I suffered a massive nose-bleed, hence the party was put on hold the lights turned on and I was wheeled out and back in the car. I get used to it, many people panic that do not know me, course what made it worse  I was on Tramadol for pain, so I was 'sort of on a high' anyway - I didn't recognize people to start with. I'm on 140+ tablets a day, and 5 injections in hospital every 10 weeks. It is horrible having to live like this, physically I'm a mess, mentally I'm not too bad.

      Their forms are specific and detailed, so give them detailed answers, so they have to read it. Any additional details take with you, remember they will try and make you do things that you would not normally do, if you cannot hold or pour hot water from a kettle, note this down.

      Anyway, I'll wish you all the best for tomorrow and hope everything goes well.

      Regards,

      Les,

       

    • Posted

      Oops! 140+ tablets a week!!! Not a day...sorry about that! lol

       

    • Posted

      Lol I was going to say this was a lot! Horrible hearing about your situation but you seem like a very lovely person. iisn't it funny the people with bad health e,g can't do much, downs sindrome. Are usually the nicest smile 
    • Posted

      Hi Stephieee,

      Why thank you, Stephieee!  Everyone has problems as I see it, okay I might have more than most and my Doctor calls me a complex case, LOL - but, I get on well with my doctors/consultants! Physically, I am basically useless..lol  Mentally, well that's a much different story. I get on with most people, to be honest it is one area I am enemy - free! I think... wink   Me and people on chat, I have to be very careful - I came across something recently, using Mathematics and assumptions I find things, normal people would not even think of.... but, to me are very real. eek

      Regards,

      Les.

    • Posted

      I did the online pip assessment and passed. But dwp still awarded me 0points. I dont understand cos ive neva applied for this before
  • Posted

    Hi I have sjogrens and fibromyalgia had them 3 years now, I have lots of help washing getting dressed etc from my husband, on February 2 I to sent in forms to pip, I had a appointment for November 25 but they cancelled it ,they gave me another app Friday December 5 i swapped days of as well as my husband swapped his to get a telephone call 9 in the morning same day to cancel that app as well, I now have one 31 December, now is that on 
    • Posted

      Omg thats terrible you poor thing, right i would get in touch withyour local mp and send them a detailed letter to get it sorted now this so unffair for you to have to wait likethis because they kepp cancelling i would really be mad im just gratefull that at the moment mine is done by Dla so wishing you all the best hun

      Cherl

    • Posted

      Thank you I was so mad on Friday, it's stressful enough trying to swap shifts at work I explained this to the person from atos who called me but he wasn't interested,  how many other people has this happened to though, the person who rung me said the person who I needed to see was away sick that's what they said the first time to, surely they have a contingency plan in place( hope I've spelt that right )
    • Posted

      Hi Gaynor,

      Obviously, your claim will not be affected in anyway, but you can complain to the DWP initially, if there's no joy  then take it further.

      If you’re unhappy with the response then complain to the Director General of Operations for the Department for Work and Pensions. They aim to deal with complaints within 15 working days.

      After this there are other paths, but in most cases your complaint should be dealt with at this point.

      Hope that helps, if not let me know.

      Regards,

      Les.

  • Posted

    They do not realise how stressful and difficult it is to organise these things from our point of view...I rang them on Wednesday because I slipped a disc and was worried that I could not make it on the day (which is tomorrow btw) & they were fine about it...they said if you dont think you can make it then just ring asap to let them know...I got a text on Friday confirming my appointment...as seems to be going smoothly atm...fingers crossed! Lets hope I'm gonna do okay! Good luck with yours...xxx
  • Posted

    You NEED to appeal honey defo...they sometimes refuse initially but agree on an appeal! Did u take somebody with you when you went? I had my assessment in December & won & didn't think I would get it...but u do find the majority people who appeal do!

    Don't give in honey,..imagine all the people who do & the money they are saving?

    Don't forget you didn't actually get diagnosed till the September but applied in the August so the diagnosis will not have been in yiur first application....keep me posted thanks & keep on fighting! !!

    DO NOT GIVE IN!!!!!! Xxx

  • Posted

    Its so unfair, I know haw you feel.I were diagnosed 4years ago have applied twice and got turned down on both occasions. I know someone who was only diagnosed 8 weeks, she applied and now has Full Mobility and the Blue Badge...Just not right...

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