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diagnosed in september 14, refused PIP. feeling low.

Posted , 39 users are following.

steph9852
steph9852

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

115 Replies

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  • jason_80075
    jason_80075 steph9852

    Posted

    I am sorry to hear about this. When you appeal please have a letter or evidence from someone who knows you on a daily basis and how the condition affects not just you but other people. I hope you well in the future.
  • sammy-jo_40648
    sammy-jo_40648 steph9852

    Posted

    Hi my husband has it it's not nice it's not just the pain it's mental ability with it just ask for someone to look at it again I'm sure u will get some were u have to really tell them how it affects u good luck
  • gill50535
    gill50535 steph9852

    Posted

    Hi Stephieee,i hope you are well. iv'e been reading through your post and the replies and i have to say i'm a bit scared now, i have suffered with an unknown illness for just over 2 years and fobbed off with this that and the other over that time when i finally saw a rheumatologist 2 weeks ago he diagnosed fibromyalgia but also took blood tests to check for rare stuff that the gp's don't test for, i have been refered to the pain clinic in nottingham for assessment and a 8 week course of managment stuff, but since october i have been applying for PIP too.. i had my assessment the day before i was diagnosed and although i have informed them now of the diagnosis they say it doesn't matter what it is because it's how it affects you not what it actually is but i really don't feel confident i will get anything. Although i did a self assessment online and answered the questions on the form and at my face to face exactly the same i do feel like the assessor was trying to trip me up.. they always seem like your friend at the time then throw you to the wolves afterwards.. i am fully expecting to have to appeal my claim when my decision comes through. i don't really have a question to ask so didn't want to start a new thread so just emptying my head of all these thoughts really.. i hope you and everyone else here is doing ok..

    xxxxx

    • SteV3
      SteV3 gill50535

      Posted

      Hi Gill,

      They should not take that attitude with you, since at the time of the Assessment was before your diagnosis. The DWP are currently short-staffed and made a loss in the past year, but that was over ESA Assessments and not PIP.

      In an ideal world 'Fibromyalgia' should give the claimant instant PIP for the Care side, and in some cases Mobility as well. Many people that have failed the first assessment with Fibromyalgia will get PIP Enhanced on both rates on the second look by the DWP.

      Which to me seems stupid, and a waste of money on what the DWP has to do.

      This could be affected by the new changes in January 2016 affecting PIP. We will not know more until then, and what other changes they are making to the PIP Allowance.

      I will wish you all the best Gill, and hopefully the brown envelope will bring you good news.

      Regards,

      Les.

    • gill50535
      gill50535 SteV3

      Posted

      hi les, thanks for your reply, i think my worry is because i hadn't been diagnosed at the time of my application it's the lack of evidence i can provide. but i guess i have done all i can up till this point and i will just deal with what ever the brown envelope has to say one step at a time.. if i have to appeal then that's what i'll have to do. 

      here's hoping for a good outcome.. 

      Gill

    • lynn15036
      lynn15036 SteV3

      Posted

      Hi Les et al

      Just registered on this site and have been reading some of your comments on PIP.  My husband was diagnosed with Fybrmyalgia in 2000.  We applied for DLA at the time.   We had to go along to a meeting where four people were in attandance asking my husband loads of questions.   Needless to say he was refused any financial help whatsoever.  As with everyone else who suffers from dissabilities my husband claimed incapacity benefit but was informed that he would have to complete the ESA form.   After completing the ESA form we were informed that he had been placed in the work category group of ESA so we appealed and won, the judge siting regulation 35 of the ESA regulation rules,  stating that he would be put in the support group until April 2014.  We have heard nothing but understand that is due to a backlog of all claims/decisions being delayed.   I decided that we would have another go at applying for IPI as my husbands health has deteriorated over the years, he now has cervical spondylosis with nerve impingement down his right hand, degenertive disk disease in his lower back, hiatus hernia, arthritis in his knees, his toes from time to time become lumpy, red and inflamed, he has tinitus and just lately he has been having tests for early onset dementia due to his poor memory and concentration.   Thankfully the latter has been ruled out and the phsyciactric has put him memory conditions down to Fybromyalgia and the amitryptaline he is on.   I finally received the form and noted that it is not as indepth as the ESA form.  However I just received the form on 1 July and it has to be completed and back to them by the 22nd July.   I started collating all the consultant and GP letters together and hastely completed most of the form last night, but I feel that maybe I have rushed it and not explained his conditions properly.  I get the ideal of what is needed to fill in the form but just freeze at the thought of it.  Just wondering if you can give me some advice on how I can put into words on the form the way in which my husband's illnesses affect his daily life.  The consultants/GP letters are ok in that they confirm my husband's illness but its hard putting it into words when you are not actually suffering these conditions yourself.

      Regards.

      Lynn

  • leeanne35
    leeanne35 steph9852

    Posted

    Hi I was diagnosed with the same thing 2 and a half years ago Iam still bk n forth to hospital and doctors to find the right medication to try and help with the pain as so far all medication given has been unsucsefull I applied for pip 15 month ago and was turned down and again on the Re look so I had my appeal 15/12/15 and was sucsefull this time round I hope u have the luck I did x
    • carol60464
      carol60464 leeanne35

      Posted

      Hi learned did it go to tribunal, as that's my next stage and if so can you please talk me through what happened as I'm very anxious and don't know if to do it I have about 2 weeks to reply, thankyou carol
  • ImustImust
    ImustImust steph9852

    Posted

    I was called up for a PIP assessment after being on DLA for many years. I have a severe social phobia (amongst other mental health and physical problems) so had to cancel the appointment on the day as I just couldn't force myself to get there. I also have ME which stops me dead in my tracks when it hits. I also can't walk far due to a bad back/twisted spine.

    When there I didn't feel too bad so was able to cope with meeting this stranger asking questions which as someone else stated he seemed to write the exact opposite of what I said. He asked if I drive and I replied only if I feel well enough. The letter I received today states that 'as you can drive you have no issues getting about'. This is far from an accurate description of the situation.

    Somewhere along the line I called him 'Doctor'. 'Oh I'm not a doctor he said, I'm a physio'. I thought I was there for a medical examination! I wouldn't expect a physio to know the first thing about mental health problems!

    Anyway I just got the dreaded letter today saying that my DLA is finishing next month and it won't be replaced by PIP. Every single assessment value was a big fat zero.

    I have made an appointment for my GP who will be calling me to have a chat next month but what do I do? I have received absolutely no help whatsoever with my mental health issues for the last 11 years. I am scared to cook a meal in case I forget and walk away from the cooker. I have a first appointment for the local ME unit at the local hospital next month.

    Any advice?

     

  • carol60464
    carol60464 steph9852

    Posted

    I've been suffering with fibromyalgia for years but only diagnosed last year I also have arthritis in both hips, spondylitis in the top and bottom of my spine, an impingement in my shoulder, severe depression and I might have lupus I'm waiting for the results to come back, I got knocked back for pip I wrote a letter and asked for a reconsideration and explained to them where the woman who gave me my examination had basically lied and I got knocked back again, next stage is a tribunal but I'm not sure what to do I'm very anxious and just feel like giving up, any advice would be great.
  • pollmadoll64
    pollmadoll64 steph9852

    Posted

    I know exactly where you are coming from as I have just been reinstated by the tribunal by paper reconsideration as it was clear the pat the assessor was lieing and contradicting herself. Have you got a copy of your assessment because that will show you where the lies and contradictions were made. I have won both cases for ESA and PIPs having been refused twice. But with perseverance and medical evidence you will get reinstated in the end. I was being pushed over the edge but I never gave up . I have asked for a full investigation from ATOS into how the assessor went from 16  points back in May for 2years before shoulder surgery when I was driving and working to only 7 points after surgery when I could not do anything and was in loads of pain due to FIBromyalgia. 
  • ImustImust
    ImustImust steph9852

    Posted

    I don't doubt for one minute that your assessor outright lied Steph as did my own. I wonder if they are told what to put and to fail everyone? This stinks of outright corruption and fraud to me.
  • pollmadoll64
    pollmadoll64 steph9852

    Posted

    If you get a copy of your assessment you will be able to expose their dishonesty!
  • rosanagh62201
    rosanagh62201 steph9852

    Posted

    I am in my late 6oyrs and concerned about P.I.P as my circulstances are worse although I am on the highter rate of D.L.A I also do not have my orginal documentions on when I first applied may years ago, and am unaware of what my Doctors letter said.  I have had three hip repacements over the years and that stage I have completely forgotten if I let D.L.A know, hower, now my feet are very bad and was offered an operation to break my toes and insert wires which I turned down due to the very long converlense and the fear that they are not often successful, should I have let D.L A. know?  I have developed other health issues since applying, should I have let DLA know as I am already on the high mobilty and care compollent so thought it would not be necessatry, any idea what I should do abut out all this?  I would be very very grateful for a reply and any advice? I  Thanks so much.  Good luck Stephieee on your appeal, I too am on Gabipentin and other strong medications and need a great deat of help, also severe arthritis in hands and of course most of my body,  Thanks  Rosanagh  I feel very frightened about all this and like yourself I am unable to get into a bath as it is too high for me to get into and certainly unable to wash myself in various places and have to have a Carer.  Thank you again and like yourself I am afraid I am ramberling, can you help?
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