Lupus PIP result : Some advice please. Feeling very... - LUPUS UK


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Lupus PIP result

LilyMistri2 profile image

Some advice please. Feeling very sad. I received my PIP result today and lost my higher rate mobility. I’m mortified at the fact that they’ll take my car away now. I find it so difficult to get around with my muscle and joint problems and my balance from the stroke I had 20 years ago, never mind the Lupus exhaustion no one on this earth could ever understand unless they’d had it! Obviously the first thing I’m thinking of is call the CAB and start an appeal. Any advice and stories would be much appreciated. I’m in tears, although I know I need to be strong now. Thankfully they didn’t take my Living Component away. Why do they do this to us?!! And the report! It said they couldn’t detect any anxiety! I just can’t even go into all that, without this turning into a very long post! Thank you in advance to anyone replying. X

12 Replies

Appeal - and look back at some of the recent posts. Someone posted recently about their experience.

LilyMistri2 profile image
LilyMistri2 in reply to PMRpro

Thank you. I’ve just noticed the other posts. Some very good advice.

So sorry to hear that the system has failed again! Appeal appeal appeal! I have recently been awarded standard rate for daily living but zero else! The nhs traffic warden that inrerogated me did admit that if you hold a driving licence you will score zero on descriptors such as memory and cognitive skills, also getting to places you know well.

I would Def get some help and advice before your mandatory.

Good luck with things. Be strong.

Big hugs x

LilyMistri2 profile image
LilyMistri2 in reply to Tia666

Thank you so much. Yes I noticed, my assessor says my memory and getting to places etc is fine. I get what you mean. Hugs back. X

Do you Pip for a living I'm a support worker when it came to my and dreaded it Had to go to a mandatory reconsideration but got an award

First phone up the council see if you get a welfare rights officer to support you most areas have them.

If not you have one month to put in a mandatory reconsideration letter

Explaining why you disagree with the decision

Example they've awarded you less points than needed for higher rate mobility you disagree with them because they said that you can walk more than 10 m but more than 50% of the time you cannot and any evidence to prove this medical

LilyMistri2 profile image
LilyMistri2 in reply to

Thanks for your suggestions. I’ll definitely be detailing my situation to them. A cruel system!

No advice but I’m very sorry this is happening and very much hope your appeal is successful.

LilyMistri2 profile image
LilyMistri2 in reply to JStro52

Thanks for your wishes. I appreciate them. X

Hi..I'm so sorry that hear that u have to jump through the hoops n then break through the red tape that these tormentors throw our way!!!

It's usual to be upset n u will need to have a good cry!! Then u will get angry because your reading the pack of lies that the assessor has written!! I tell u they are wonderful storytellers!! At this stage they are messing with your consolation is that u had the bad news in a letter..I had some arrogant bloke who obviously loves his job telephone me at 9.30 in the morning to give me the bad news himself!! 9.30 in the morning doesn't exist for me..because I'm I'll leave it to u to wonder about that conversation...put as many swear words in as u can n u will get some idea 😏..from me not him!!

In that letter there will be information about appealing..they usually let u know what hoop u have to jump through next ..usually mandatory reconsideration is the first step

..they usually turn that down as well n then it goes to appeal!! Definitely get in touch with citizens advice and arrange an appt to see someone about this..they will give good advice n they know the crazy system that u have been tossed into!! If u have a good GP it might be a good idea to speak to them about what has happened..mine did a letter for me including photos of my ulcerated feet which the appeal panel later relied on at the appeal and that helped me to win the case...even though I didn't bother going to the appeal because I was so ill with the whole thing!! Which brings me to the most important point of all...u must try to stay as positive about this as possible my lovely!!! Yes have a cry..but be very aware of your lupus..these people are out to try n kill us..n they will mess with your's time to put on the armour and get your warrior makeup on..brush away those tears..gather your support..plan your strategy..n then lady...KICK ASS!!!!!! Cyber hug heading your way honey 🤗🤗🤗xx

Thank you so much for your long message. I really appreciate you writing and the pep talk. Thinking of this as a process is very helpful. I will now put my warrior paint on and commence battle strategy. Hugs back! X

That's the spirit!! And remember that u have a whole tribe with u!! We deal with pain n challenges every day with no days off.. we're much stronger than we look!! Xx

Chanpreet_Walia profile image

Hi LilyMistri2,

If you would like information regarding PIP i.e. reconsiderations, appeals and the support available to you, you can email me at

All the best!

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