I scored zero points — Scope | Disability forum

I scored zero points

floralora Member Posts: 15 Connected
I'm so angry! 
I have joint hypermobility syndrome (which may be hEDS, getting it looked at) and I suffer with both depression and anxiety which leaves me shut in my room. I applied for PIP because I can't look after myself, I'm unable to do things that people my age do (I'm 20). I had my f2f on the 24th of January and the decision letter came in the post today. I use a walking stick to get around, and I'm in pain all the time. 

I can't cook standing up, it hurts too much. It's unsafe because my knees sublux and can give out at any moment. I can't stand for long periods of time because it hurts after five mintues. My legs ache and my knees get stiff. I can't shower for the same reasons, and depression gets in the way making me want to stay in bed. I can't manage my treatments, I never remember to do my exercises for my knees and I constantly forget to take my medication. I have a pill box with labelled days of the week on so I can see if I've forgotten, or if I purposely not take them, my boyfriend can see. I struggle to dress my bottom half, and most days I don't get dressed (again, depression). I struggle to communicate with others, I get very anxious and it makes me sick. I was even anxious at the f2f but he lied and said I was fine, despite me telling him I was. I don't engage with other people without my boyfriend around, or other familiar faces. I rarely leave the house. I can't manage budgeting decisions either, my boyfriend made me a spreadsheet which works it all out for me. I can't plan and follow a journey on my own, it causes me a lot of distress and anxiety, especially since I have an abusive ex who I'm scared of seeing. I never go anywhere new without my boyfriend, who went with me to the assessment. I can't walk unaided for more than 20 metres, I have to keep stopping and it's unsafe because my knees can give out. I use a walking stick, but I can't even get far with that. Apparently I'm fine because I got out of the chair properly, but it was high up so I had no issues. I can't walk more than 200 metres like the report says. I can't do it safely or reliably, because days I am stuck in bed in so much pain. I only did one of the examination things, but said it hurt and refused to do the others, but he wrote that I did them all without any issues. Apparently because I take ibuprofen before bed meant that I'm not in pain, because it's a "low-dose medication" even though I said it didn't help. I've actually just been put on stronger medication because of it. I even said that my boyfriend does a lot for me, he basically cares for me. 

The assessor lied about everything. Apparently me having dyed blue hair means I'm fine, my boyfriend helped me do it. Apparently because I go to uni means I'm fine, despite the fact that I never attend and have the emails to prove I don't go. 

I'm just so angry and upset that I didn't score anything, despite the fact that I'm not able-bodied at all. I wish I was fine, I really do. I'm only 20 and I feel like I've had my life ripped from underneath me, as I can't go out with friends or do normal 20-year old stuff. I spend so much money on medication (indigestion tablets, I get bad acid reflux which makes me wake up with bile in my mouth, I did take a lot of ibuprofen, I luckily don't pay for prescriptions), uber, special tape for my knees to help support them, buying a walking stick. 

I'm going to ring them up tomorrow and ask for a mandatory reconsideration, but I know for sure I'll have to take it to a tribunal. The stress of all of this is getting too much. How is this system so flawed? They shouldn't be allowed to lie, if I can't lie on my application then they shouldn't either. It's unfair. It's not like I don't have a diagnosis, I have a diagnosis for everything. It's so unfair. Why can people falsely claim it so easily, but when I try to claim it for legitimate reasons I get nothing? I even did the self-test thing and it said I should get enhanced rates for both daily living and mobility, and that was with me judging myself on a good day. 


  • pixie61
    pixie61 Member Posts: 67 Courageous
    Hi, I’m sorry you’ve going through this. It’s disgusting what they’re putting us through! My daughter has her pip assesment next week, she’s in her 40s &  has suffered with the same condition as you, plus other associated conditions, I’m waiting for my tribunal, my assessors report was full of lies, I have Rheumatoid disease, osteoarthritis & fibro. These assessors are doing it to all of us. Def do your MR, fight it if you can! I understand your condition & feel for you. X
  • floralora
    floralora Member Posts: 15 Connected
    I wish her luck, although I'm sure her outcome will be the same as ours. It's so unfair. I've emailed my local MP, I'm hoping that if enough complaints are made then something will change. This can't go on. Don't give up on your fight! I wish you the best and good luck x 
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @floralora, and a warm welcome to the community.

    Thanks for sharing this with us, and I'm so sorry to hear about your PIP outcome. Unfortunately many of our members have had similar experiences and I'm sure they'll be able to empathise. It can be tough to deal with, but you're doing the right thing by arranging an MR and contacting your MP. Please do look after yourself and keep us updated: in the meantime, Scope's guidance on appealing DWP decisions may also be helpful.

  • faye87
    faye87 Member Posts: 4 Listener
    They won't give my son higher rate mobility and he's registered blind he's got lebers congenital amerosis apparently they said he's only needs guidness in unfamiliar places he's 5 years old 


Do you need advice on your energy costs?

Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.