Hi I am 28 years old and have fibro and hidradentitus supperativa I applied for PIP march 2014 and still have not got it. I have to now appeal and go to tribunal. I have been off work months and work are going to finish me on ill health. It's not what I want but at the moment neither condition is under control. Really don't know what else to do I live alone with my 6 year old daughter. Has anybody got any tips to help me ???

10 Replies

  • Morning Kayla,

    Welcome to the Fibro site. It is one of the best if not the best (but I am a bit prejudice) :). I read of your other peoblem and admit I had. never heard of it before so I rushed off to resouce it. I now understand a little about it.

    I am afraid I cannot help in that direction but someone else may be along !

    In the meantime have a look at our Mother site on

    Lots of vital information. When you have had a look do come back here

    Best wishes


  • I will do thank you x

  • Hello Kayla86,

    Welcome to the FibroAction community!

    As well as our website information mentioned by Gins, you can also email for step by step guides on PIP. These can be sent via email and maybe of help to you.

    Hope this helps :)

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Hi I'm in the same boat myself but you have another chance before appealing it's called mandatory reconsideration..

    Get evidence together and do some online reading, read their refusal comments and go through what BS excuse they used for refusal, use a website called benefits and works, and read as much as you can about the wording...

    Start getting together your evidence then within 28 days of the decision date (initial refusal) you must phone the pip people the number is on the refusal letter and state you want a mandatory reconsideration, push it as close to the end of the 28 days as possible as it gives you more time to read and gather...

    Once you've called them they file at their end and this give you up to 21 days to submit all further evidence, but don't leave it that long as they aren't to be trusted and could make a decision sooner (never take their word for it)

    Send as much evidence as possible, write a diary of warts and all of what life is like, anything can help...then send by SPECIAL DELIVERY as they can't be trusted and want us off the benefit...

    One important thing when gathering evidence is the use of their guidelines, reliably, safely, to an acceptable standard, in an acceptable time....use this for any action you describe, did you try and get out of bed but couldn't then write it down....

    I'd certainly recommend the benefits and works site, also fightback, consumer action group..lots of online reading is the answer...

    Write a cover note with it which I will post later once my own pain has eased....

    It's any excuse now with them not to pay, I was distressed when I got refused but have been working hard on gathering evidence...

    I'm on a massive amount of morphine via burprenorphine patches, I'm prescribed 2 at once by my rhumy which is a huge 140mcg. I've never heard of anyone on more than 70 mcg. I even took a prescription with me, any normal person would think this would mean my pain is severe and has been demonstrated to the medical profession previously and has a good basis for paying my claim...but no I was awarded 6 points and cheated out of any award for the 3rd time...

    Was cheated out of DLA 2 years ago, they stated then I could walk more than the 200m required for an award, so got nothing, yet now I've applied for PIP and they've reduced the distance require to get an award they now state I can walk mobility is still as lousy as it was 2 years ago...

    Use their key words to formulate your arguments, use facts and evidence...

    I'm here to help if there's anything else you need x

  • Just read up on this and wanted to send best wishes to you, it looks a very debilitating condition xx

  • Thank you every one means a lot never felt as alone in all my life it's horrid. Have already had a reconsideration and still they said no 😢 work have rang me and said they will be coming out to see me on Monday and will be ending my employment 😢 just want this night mare to end xx

  • Contact CAB if not done already and get help with Tribunal via them ? They did help me. Good luck.

  • Ps. I applied first in my forties , my Fibro probs were increasing. Told, no.

    Applied again in my v late fifties using a CAB representative who came to my home to help with the form (tho. I am a big head and believe I can do anything!) in spite of the help, I

    Was told, no, it was a Tribunal job.

    I appealed.said, truthfully, no chance of me attending the a Tribunal, far too unwell.

    INCREDIBLY QUICKLY, a letter came saying DLA was granted to me. It was almost like someone else had assessed my application and overruled the first decision.

    I am not sure that it ever reached a Tribunal, I have no more mention of that in letters.

  • I am so sorry to read that but I can see that you have been given some wonderful advice so I will simply wish you all the best of luck with your tribunal.

    All my hopes and dreams for you


  • Thank you for your help I have sent off my appeal so fingers crossed. I have also been off work since November 2014 work are coming out to see me tomorrow and are going to end my contact due to ill health. Has anybody been through this??

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