Appealing my PIP decision

Jason01
Jason01 Community member Posts: 20 Connected
edited July 2018 in PIP, DLA, and AA
Hi . I have ankylosing spondylitis and fybromyalgia. I'm currently appealing my pip decision,  and I cannot begin to tell you how stressed and worried I am . 
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Comments

  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    me too Jason1 . its a absolute disgrace how we are treated. The degrading assesment made me cry. The twisting of words and the total disregard for ovbious disability is in my view abusive and cruel. I attended in my scooter but lost all my previous daily living points and scored 4 for mobility . what a joke eh! I have appealed.
  • Jason01
    Jason01 Community member Posts: 20 Connected
    It's a long and involved process.  It's taken 30 years to get thus far , and now all the work professionals and myself have done could be wiped out by a loss of mobility 
  • Jason01
    Jason01 Community member Posts: 20 Connected
    I only needed 2 more points , citizens advice are now helping resolve this 
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    jason1 i too have fibromyalgia and it is very difficult as it is a invisable condition open to suspition and misunderstanding. i dont think even my GP truly gets what my life is like .

  • Jason01
    Jason01 Community member Posts: 20 Connected
    My gp and everyone else gets it , it's the pip assessors who don't understand chronic pain and struggles 
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    that is good . i had to recently start using a scooter due to the pain of walking and when i told him he said that wasnt a good idea! i was trapped in my flat as i couldnt.cope with the pain of walking or standing and my mental health took a nose dive as i also have Complex Ptsd
  • Jason01
    Jason01 Community member Posts: 20 Connected
    I use crutches and a scooter. Its too painful otherwise. Why did he say nit to use scooter, maybe you need a new doctor 
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    He said he thought that I might get used to using it! I had to explain to him that i couldnt cope going out without it so I felt like i was left with no choice...I dont believe he gets it and yes i am thinking a new Gp is needed as i dont feel he hears me.
  • Jason01
    Jason01 Community member Posts: 20 Connected
    The patient is the one who knows, these doctors are working for us and their opinions aren’t always welcome 
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    i know he is a very quiet person and its like pulling teeth trying to get him to engage and then he says that.. when i first became ill he told me i couldnt have ME like another Doctor suspected as i wouldnt be able to make my appointments at his surgery and that made me alert to him not "getting it"
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    although he was better than another doc at the practice who was refusing to give me a sick note for longer than 2 weeks when i was being assesed because i didnt look ill to her! i was so upset and in floods of tears as i felt how the heck do i get well when you dont get im ill
  • Jason01
    Jason01 Community member Posts: 20 Connected
    My previous doctor used to smirk at every single thing, it was really annoying, so I changed doctor. Some people have no respect 
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    That is unaceptable and says all you need to know about their level of understanding of how it impacts us on a daily basis. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,511 Championing
    Hi @Jason01 and welcome to the community! I am sorry to hear that you are finding things stressful at the moment. Going through the benefit system can be stressful, so I hope we can help in some way!
  • Waylay
    Waylay Community member, Scope Member Posts: 966 Trailblazing
    I have chronic pain too. 0 points at PIP assessment. Apparently I showed no sign of pain. What was I supposed to do? Scream constantly?
  • Jason01
    Jason01 Community member Posts: 20 Connected
    Thing is, i yelp and screamed all the time, still didn’t help 
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    mikehughescq 
    Im sorry but are you saying that I would be better walking .....even though the levels of pain and spasticity in my muscles meant that. i had a panic attack each time i left my house? 
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    wow! what a patronising unhelpful negative and smug attitude you possess. Get back to me when you know what its like to HAVE to use a scooter you ignorant person
  • Jason01
    Jason01 Community member Posts: 20 Connected
    I had no choice . I was completely unable to walk. The pain was excruciating.  It's better to use a scooter than hurt yourself more 
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    jason01
    thankyou . I am so fed up with small minded people who dont have a clue what we face. I am a educated woman who has a degree in acupuncture and I dont need a lecture on my own body by a person who ovbiously is not in a position to challenge or educate me in  my situation as you i know it is not a choice when a disability is at the level we experience . 

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