Appealing my PIP decision

Jason01

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 . 

[Deleted User]

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

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

I only needed 2 more points , citizens advice are now helping resolve this 

[Deleted User]

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

My gp and everyone else gets it , it's the pip assessors who don't understand chronic pain and struggles 

[Deleted User]

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

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]

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

The patient is the one who knows, these doctors are working for us and their opinions aren’t always welcome 

[Deleted User]

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]

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

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]

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_Alumni

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

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

Thing is, i yelp and screamed all the time, still didn’t help 

[Deleted User]

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]

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

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]

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 .