Payments have been stopped a week prior after PIP review — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.

Payments have been stopped a week prior after PIP review

Swanjack79 Member Posts: 2 Listener
edited February 2019 in PIP, DLA, and AA
40 Year Old bloke with Chiari Malformation and Syringomyelia.  Diagnosed with both 12 years ago.  Had decompression surgery 5 years in an attempt to control headaches and stop further progression of symptoms (ie. loss of sensation in extremities, chronic neck and back pain, headaches etc) but it wasn't successful.  Multiple lesions were also found on my brain during MRI scan, but due to diagnosis for CM overlapping with potential MS, neurologist won't commit to a diagnosis. 

Have been through all pain medications imaginable, and pretty much the NHS (specialists and GP surgery) have given up with the quote "Nothing much more we can do." being a mantra played out by those professionals I have dealt with in the last 12 months.  That in turn has made me kind of give up on ever feeling any sense of normality again too. 

I have gone from a professional career to a husk of what I once was. 

PS:  I'm not usually this gloomy, but I have had a weekend that has kind of broken me completely.  I first had to put my dog down on Friday after 15 years of her as my shadow, and then Saturday morning a letter from DWP came through saying all my payments had been stopped a week prior after a PIP review, despite my condition worsening over the time since last assessment. 


  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Swanjack79   Pleased to meet you welcome.

    Thank you for joining and sharing.

    Sorry to hear this. What you are going through.  I am one of the team of community champions who help and advise new members who join.

    You need to appeal PIP decision we have lots on our website.  Information and advice.

    Have you spoken to CAB about the PIP decision. They can help and advise you.

    We are here to ask anything. Some one will know.

    Please take care.

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @Swanjack79, and a warm welcome to the community. 

    I'm so sorry to hear about your circumstances and that you're feeling low. I'm truly sorry for your loss, too. You're coping with a lot at the moment, but you're among friends here who are here to listen and support you. Please do let us know if you have any questions, and I hope today is as kind as possible to you.
  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @Swanjack79

    Welcome it’s my meet you this morning ?

    I am very very sorry to hear about your weekend.

    Yes I had similar “Brain Probs” which have turned my upside down “big time”

    Please let me know if there’s anything that I can help/support you.

  • CockneyRebel
    CockneyRebel Member Posts: 5,212 Disability Gamechanger
    First you need to ask for a copy of the assessment. This will give you an indication of the descriptors that you need to address.
    Then you should ask for an MR, in writing , within 28 days  of your decision letter

    Be all you can be, make  every day count. Namaste


Complete our feedback form and tell us how we can make the community better.

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.