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Hi, my name is lottiekins!


I am 29 and live with numerous health conditions that affect my mobility and ability to function. The biggest two are Ehlers Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome. 

I am currently looking for support dealing with the above, the benefit system and am about to hire a carer, so with that too!

Would be great to chat :)


  • CockneyRebelCockneyRebel Member Posts: 5,258 Disability Gamechanger
    Hello lottiekins and welcome

    We are here to support you in any way we can.
    Do you have any questions at the moment ?

    Be all you can be, make  every day count. Namaste
  • lottiekinslottiekins Member Posts: 6 Listener
    The biggest issue at the moment is that I was due to have a PIP home assessment with capita on the 1st. I waited in with the person accompanying me, but nobody turned up. When I called to tell them at 11.15 (my appointment was for 10.30), they told me it had been changed to 11, and to wait in and then call the next day. I did so, but was told the assessor came and I wasn't in! I have been going round in circles with them - I have been ringing repeatedly for updates, my friend who accompanied me has called up independently to give them her side of the story, and letters have been sent from my GP and social worker, but they are still claiming I did not attend.

    It is now being passed back to the DWP who have told me they are likely to cancel my claim.

    If my PIP is stopped, I will be in serious financial difficulty, and I am petrified. I have a number of difficult health problems cropping up at the moment, and my father has just gone through cancer surgery, so neither him nor mum are working, which means I have no backup.

    Is there any advice on what to do in this situation?! I feel so angry that there is no way of fighting your own corner when it comes to the benefits system - its a constant battle.
  • CockneyRebelCockneyRebel Member Posts: 5,258 Disability Gamechanger
    this is a hard one to fight and win
    The DWP should write to you, giving you the opportunity to explain why you failed to attend
    However, they will nearly always take the word of their assessor and this will result in your claim being closed

    Have you spoken to A DWP manager or just a phone operator ?
    If not then that is something you can try

    It might be worth getting your local MP involved at this stage

    I hope that one of the advisors will be able to give you some suggestions

    Be all you can be, make  every day count. Namaste
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @lottiekins, welcome to the community!

    I have a form of POTS myself, and have found the team at POTS UK to be absolutely brilliant in terms of information and support.

    So sorry to hear about your assessment experience and that you've been penalised for something that isn't your fault. Glad that CR has provided some useful information above, and I hope it helps in terms of moving forwards. If there's anything we can support you with in the meantime, just let us know, and keep us updated! 
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @lottiekins

    A very very big welcome to you this evening.

    Please please let me know if I can offer you help/support ??????

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