I have Lupus SLE and Denied PIP — Scope | Disability forum

I have Lupus SLE and Denied PIP

Baseman Member Posts: 2 Listener
Hello. I suffer from Lupus Sle, depression and was on PIP for about 8 years until they stopped it a few days ago. Last year I received a letter telling me I will receive PIP till 2024. It had been a very hard year for me. At the start of the pandemic I was told to stop taking my Aziaphioprine because my white cells had gone too low, then I had to self isolate alone. I then started receiving letters stating I'm very high risk and if I catch Covid I will die. I was terrified, super depressed all alone. It had a major impact on my mental state. I couldn't see doctors, everyone was busy with Covid. I then started to lose my hair, then the one that I dreaded started again. Black dots on my skin which started to get larger. All over my face. Already have the butterfly rash. Then the joint pains and tiredness and memory loss. I tried to end my life by taking tablets, that didn't work. 

Beginning of this year I told DWP my condition had worsened. I had an assessment 2 months ago over the phone. The assessor asked me if I've tried to harm myself I told her yes and broke down. She said she was going to end the assessment and call my doctor. I told her I wanted to go through with it. Everytime I tried to give her examples she would cut me short and tell me we only have an hour, she would shout at me and tell me I'm going to lose my PIP and twist my words. I told her I have no sense of smell, I've nearly burnt down my flat twice so I use a slow cooker. She would then say if I use a pressure cooker then I can cook. So I'd have to correct her. She totally lied about things I said. She called my doctor who immediately doubled my anti depression tablets then a few days ago I received a letter stating my PIP has ended. That money used to help me get out and about pay bills and help with daily tasks, I called samaritans it helped a little. I'm confused, depressed in pain and need help. 


  • Ross_Scope
    Ross_Scope Posts: 6,638

    Scope community team

    Hello @baseman

    Welcome to the community, thanks for joining.

    Sorry to read about everything you have been through since the pandemic started, you appear to be really struggling.

    Are you in regular contact with your GP about your mental health? I would advise speaking with them if you feel as though you need further support, or if things are becoming even harder to manage. Additionally, I am not sure if you feel suicidal at the minute or have done recently, but please contact 999 right away if you ever feel as though you might be at risk of harming yourself. 

    you can access the below any time to get immediate support:

    • Samaritans, who you can call on 116 123
    • The Shout service, which you can access by texting "Shout" to 85258
    • This page on the Mind website that has a series of coping techniques and tips
    I have sent you an email from [email protected] with further information, please give it a read and get back to us.
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • poppy123456
    poppy123456 Member Posts: 28,366 Disability Gamechanger
    Before you reported the changes did you get some expert advice from an agency near you? A worsening of condition doesn't mean you're automatically entitled to a higher award.
    What you need to do now is request the Mandatory Reconsideration (MR) you should state where and why you think you should have scored those points. If you didn't add some real world examples in the orginal form you filled in then i'd advise you to do this for the MR. Adding information such as where you were, what exactly happened, did anyone see it and what the consequences were.
    There's a form here you can use but you'll need to print it off to send it. https://www.gov.uk/government/publications/challenge-a-decision-made-by-the-department-for-work-and-pensions-dwp
    Or you can just write a letter.
    You can try to get some help with the letter but some agencies won't help with the MR stage because they are so busy, they often don't have time to help people at this stage. For this start here. https://advicelocal.uk/

  • Baseman
    Baseman Member Posts: 2 Listener
    Thank you for the prompt reply. I have been in touch with my GP last year but because of the pandemic I have not been successful in getting appointments just a phone call now and then. My appointments for the local hospital specialist has been cancelled and rebooked 3 times now by them, so I haven't seen my specialist for over a year and a half. I'm going to write a letter to request a MR. I'm feeling better now mentally. It's just going to be hard this time of year with no funds and energy prices going up. Even if they were to change their mind my situation I don't think will change till next year. I will let you know how I get on and when I've sent my letter. Much appreciated. 


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.