Hi, my name is pjosiejo69! — Scope | Disability forum

Hi, my name is pjosiejo69!

Absolutely devastated... after being awarded DLA for 16 years for a progressive rare illness called Sapho Syndrome, I lost my indefinite DLA on the changeover to PIP. Have managed to work 16 hours a week for 20 years as a hca nurse for the NHS but have been off sick for months as am too ill. I have had a face to face - total lies throughout and 2 mandatory Reconsiderations, not even rechecked, and am waiting for a tribunal. As a result of losing DLA, I have also lost the disability element of working tax credit and therefore today have lost the rest of working tax credit without any warning! So now all I have to survive on his my half pay from work and ssp, which combined just covers rent and council tax and is £633 - lost £690. Absolutely devastated and so so scared of the future 😥xx


  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @pjosiejo69

    Welcome it’s great to meet you this evening.

    I am one off the Community Champion’s here at Scope.

    Sorry to hear about your “PIP Journey”

    Yes we have got a number of members in the same boat “Ship” with there “PIP” 

    We have got some good info on “Pip”

    I have just been through my “pip journey” which was a great experience!!!!!

    Please please let me know if you need any help with yours????

  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @pjosiejo69 and welcome to the Community.  It is nice to meet you.  I am so sorry to hear of your current situation regarding PIP and can appreciate how upset you must be.  As @steve51 has said, many of us on the forum have had long difficult journeys with PIP.  I hope you get things sorted out and please keep in touch and let us know how you get on.  I am sure many of our members will be able to advise you also.  Wishing you all the best.  
    Winner of the Scope New Volunteer Award 2019.   :)
  • pjosiejo69
    pjosiejo69 Member Posts: 2 Listener
    Thank you so much. Have been to the council and filled in a dhp and waiting to hear and have borrowed 200 for this months bills and bro has offered to lend me 200 for next month so have the basics but it is mounting up and my illness is exacerbated by stress which is through the roof. Am just very tearful all the time and and it is even harder because of this time of year. My anxiety is through the roof. Thank you for listening xx
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    I am glad that you have manged to get the ball rolling and got some financial help for now @pjosiejo69.  I can understand you feeling very stressed and being tearful as I would be the same I'm sure.  We are here to support you anytime.  I am going to tag in one of our members, @poppy123456, who is very experienced with DWP matters and may be able to advise you on this.  Please take care and speak to us anytime.  Try not to worry, but I know that is easier said than done.  I hope you get things sorted out and wish you all the best.  xx
    Winner of the Scope New Volunteer Award 2019.   :)
  • poppy123456
    poppy123456 Member Posts: 24,738 Disability Gamechanger
    Thanks @Ails for the tag,

    HI and welcome @pjosiejo69 The reason why your tax credits ended was because you're no longer entitled to the disability element because your DLA ended, one of the qualifying conditions to this is that you're claiming either PIP or DLA through out your claim.

    The only other benefit that you maybe able to claim now is Universal Credit but if you claim this you won't be able to go back onto tax credits at anytime in the future, even if your PIP Tribunal is successful.

    Whether you'll be entitled to any UC will depend on your circumstances. As you're receiving sick pay and SSP from work then this will be deducted £1 for £1 from your UC amount but it will also depend on how much your receive during your assessment period with UC, if you claim it. If you're living with a partner then you'll need to claim as a couple.  UC is a benefit paid monthly in arrears.

    Housing element will be included in this as i see you're also renting your home. How much housing element you'll be entitled to will depend on your circumstances. May i ask if you privately rent or rent from social housing?

    Do you live alone or with a partner, have dependent children living with you?

    You would also need a fit note from your GP to be able to claim Limited capability for work under UC.

    You could put your details into a benefits calculator and it will tell you what you maybe entitled to, if anything. https://www.entitledto.co.uk/

    Remember those calculators are only as good as the information you put into them. If you put all your information in correctly, including your partners, if you live with one then they are very accurate.

    Council tax reduction isn't part of UC and needs to be claimed separately from your local council.

    Hope this helps and if you need more advice please just ask.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,036 Disability Gamechanger
    Hi @pjosiejo69 - Welcome to the community from me too. I'm sorry to read about the disorder you face, & your problems with PIP. I've also had to migrate from an indefinite DLA award to PIP, which came with it's difficulties, but saddened that you're having to wait for a tribunal.
    Stress is not at all helpful & worsens pain, that's for sure, but everyone here will do their best to support you & Poppy has given you her advice too. Just wanted to let you we're all here for you anytime.
  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    edited December 2019
    Hi @pjosiejo69

    How are things going today 🌝 🌝 🌝

    I hope that you have found all the information useful??

    Please please let me know if you need any further help /support???

  • Adrian_Scope
    Adrian_Scope Posts: 8,178

    Scope community team

    Hi @pjosiejo69. How are you doing? Have you had a chance to look through some of the information posted above?
    Community Manager

    Tell us how to make the community better for you. Complete our feedback form.


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