Fear surrounding transition from DLA to PIP

Hi. I have just received my DLA to PIP letter and I have until 2 February to phone them and request a PIP application.

I have been ill with lupus for over 25 years, and latterly been diagnosed with scleroderma and fibro.

My question is, if they decide I don't qualify for PIP, does this mean they think I am not ill at all, and does this ultimately mean they will turn around and say I have to pay back all the DLA money I have ever received because in their opinion there is nothing wrong with me?

Feeling very scared and anxious at the moment, and wondering whether it would be worth all the stress and fear and the flare-ups if I go ahead and claim PIP.

Does anybody else feel like this, or felt like this, and what did they do?

16 Replies

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  • They won't make you pay back any money. They will just stop your money. I didn't claim DLA I've only claimed PIP . My mum use to get DLA for anxiety they told her she didn't qualify and they just stopped it when the letter said.

    You are best going to the citizen advice or somewhere like that for help with the form . As I filled mine out and got declined and had to go to appeal . I won my appeal when I went to citizen advice for help with the form.

  • Thank you LouLamb. I was thinking of approaching Benefits & Work to help. Thanks for your helpful comments x

  • Welfare rights at your council are much better for this sort of thing x

  • Ah okay. Thank you Buffy14 x

  • I used welfare rights when my esa was stopped , I asked about the DLA to PIP thing as I am on DLA still and know I will have to change to pip at some point , I asked the same question you have asked on here and she said they don't ask for the money back . She said pip has different criteria which is why people who qualified for DLA do not necessarily qualify for pip x

  • Thank you so much. That is such a relief. I was getting realy scared. x

  • I agree, the Council will help you.

  • Thank you Maurice1.

  • I am feeling this now very much so as I was a warded indefinitely back in 2010 and the stress if caused me then was painful but have to go through this again when you move area you change your Gp you don't have the same contacts where fo go...feel saying ok enough is enough I mean I never wanted to be in this situation...I didn't choose this coniton. .sorry rant over just feel so lost so I know what you mean x

  • I know exactly what you mean Lisagem. I have an indefinite award of DLA as well, and I think all people with long-term incurable illness should be immune from all of this stuff. It's so unfair.

  • Oh my goodness look at at all my spelling and grammar mistakes that's stress for you x

  • I wouldnt worry. I'm like it myself quite often LOL.

  • What id pip and dla

  • Hi Canam11,

    PIP stands for 'Personal Independence Payments' and DLA stands for 'Disability Living Allowance'. They are both disability benefits in the UK. PIP is currently replacing DLA so everybody has to be reassessed.

  • Thanks so much , I didn't know , I never knew about it

  • I'm on lifelong DLA but I know it's going to come soon, the changeover to pip. I think with lifelong illnesses people should be automatically immune from these tests and the sheer stress it puts us through. Having said that, we must gather all the evidence from doctors, hospital appointments, and keep a diary of everything, how you feel, symptoms, flare ups, why you've visited the doctor etc then when the time comes to fill in the forms you have everything there in front of you. My daughter was diagnosed with crones a few of years ago and lupus about a year ago and has just had hers and everything went well, she filled in her own form and sent all her evidence. I'm not saying some haven't had a bad experience with this transition,but lots have been fine. Fill the forms in go ahead with it and just see what happens. If you've passed once then you should pass again

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