LUPUS UK

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?

23 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.

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

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

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Ah okay. Thank you Buffy14 x

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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

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

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I agree, the Council will help you.

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Thank you Maurice1.

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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

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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.

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

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

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What id pip and dla

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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.

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

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Have you ever heard of someone who's waiting for 1st tier Tribunal to have received a telephone call from PIP stating that they will award 10 pts for each compenent if you withdraw your appeal but refuse up in request for written statement of offer??? I can't find this situation anywhere other than one thread from 2016 from a forum.

Have you heard of this method? Trustworthy???

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Hi Ladyuponthelake,

No, I have never heard of this happening before and it sounds awfully suspicious. I would recommend contacting Citizens Advice or your local Welfare Rights Adviser to see if they can guide you about this.

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Thank you for your advice. I've spoken to CAB but I've not been able to fine a contact number for Welfare Rights. CAB haven't heard of this either and not to take it. But am I then gambling and possibly getting nothing at Tribunal. Sadly my confidence in our local CAB has been disheartening lately, so I've been searching elsewhere. I've contacted Legal Aid but they can't help at this stage. It sounded as though at 2nd their Tribunal might be possible.

Thank you once again!

🌻🌻🌻

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A lot of Welfare Rights Advisers are available through local council (if that's any help).

fightback4justice.co.uk/ offer a lot of advice too and may be able to help you.

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Thank You, I'll have a search for these. Have phones so many agencies my heads spinning, but it's all written down.

Thank you Paul!

🌻🌻🌻

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I failed my application for PIP after my DLA ended. At the medical, they gave me zero points right across the board. I tried for reconsideration without luck. I was too ill to fight it. I felt worn down and really ill and couldnt face going to court, and besides, by the time I felt mentally and physically able to look at appealing, my time was up. I have been advised to start afresh with a new application for PIP. I dont know if I can face it. I've lost all my money, and now I can't do the one thing I really enjoy, which is going to festivals with the help of a carer who has a car.

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Hi Florence,

I'm so sorry to hear your plight. I hope you get to go to a festival soon! I can only imagine how nice that would be. I would need a wheel chair to do that and a carer! I can completely appreciate not having the energy and fitting it in between flare ups and sickness.

I am at Tribunal stage and am very stressed about how to proceed. Which of course we all know what stress does to us. Just makes all problems so much worse. But I am trying my best to push through it.

Best of luck to you!

🌻🌻🌻

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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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