PIP and Lupus: Hi All, looking for some advice, I... - LUPUS UK


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PIP and Lupus

CJ85 profile image

Hi All, looking for some advice, I recently received my PIP decision, stating that my mobility is normal and not entitled to it. My normal is not being able to walk far distance or stand for any given period. I rely heavy on my blue badge to get to hospital appointments, attempt food shopping or go anywhere in general. I admit I look normal and constantly smile to hide how I feel so others do not feel awkward. Having the mobility PIP taken away means that I am unable to rely on taxis due to the cost, or drive due to the far distance to walk. How can I get them to understand how those things are so difficult and limiting. I know people who receive the highest in both, but are more capable than me at doing the simple things in life. I heavily rely on my blue badge, without this, they have managed to make Lupus so much harder and limited my life, I am now stuck indoors as the effort of going places is not with the stress or pain.

Any advice will be greatly appreciated.

12 Replies

Hi, have you asked for a mandatory reconsideration or appeal against the decision.? Did anyone help you with the form? I would ask for reconsideration and ask welfare rights or similar for assistance with this. Good luck

CJ85 profile image
CJ85 in reply to jayfer

Hi, I have but the thought of that makes me feel ill, I literally have no energy to go through that, even spending time trying to ring them consumes so much energy, that I just want to scream.

Thank you

cj85, did you tell the assessor this? did you tell them the problems you face? If you didn't I suggest you request the reconsideration & put to them, with any evidence you have, what life is like for you. They are not your 'friends' you need to tell them exactly how this illness affects your everyday life & impacts it. Don't put a brave face on, they will not know your circumstances. Be honest, tell them how things are, but back it up with Drs letters & any care you need/have had. As much evidence you have. Get CAB or other similar agency involved, back everything up. Good luck xx

CJ85 profile image
CJ85 in reply to Traceydc

Yeah I did, but the assessor made me feel like I was making it all up, even though she had to help me off the chair and that was a good day. Being in pain and having issues with getting about for my normal then adding all this extra stress is disgusting. Why is it with Lupus you have to prove you are ill, like life isn’t hard enough. People who can move around better than me and have anymore active life than me don’t seem to have to prove anything. There has to be something to help those with Lupus to go about this without the additional stress.

Hidden profile image

Thats such a shame. I know how strict they are getting. You could appeal or apply to your local authority for a blue badge without pip. It looks like an independent body can assess you.

The links below should help:




CJ85 profile image
CJ85 in reply to Hidden

Thanks for that, I was told i needed PIP for my blue badge. I will see if I can do it this way.

Thank you so much!!

Hidden profile image
Hidden in reply to CJ85

No problem at all. You could try and appeal first though? If it fails then just apply for the badge.

Good luck with whatever you decide to do!

Apply for you blue badge with out pip, I just got mine makes things so much easier, didn’t even have to go for a assessment. Just fill form as your worst day and put all medical info in. I’ve not tried for pip yet waiting to see if the make the system better, luckily I’m self employed so can work as it suits me.

CJ85 profile image
CJ85 in reply to Gizmok9

Thanks I didn’t realise you could apply without PIP.

Good luck I don’t think the system will ever get better. Apparently if you can’t see it then it ain’t real!!

Chanpreet_Walia profile image

Hi CJ85,

If you would like literature regarding PIP i.e. reconsiderations, appeals and the support available to you, you can contact me at chanpreet@lupusuk.org.uk

CJ85 profile image
CJ85 in reply to Chanpreet_Walia

Thanks I have emailed you, also asked you about how to make your family understand

Hi good friend your not alone, i'v just been again for my PIP after 2 yrs, then i had been to my tribunal.feel fed up , now they have stopped mine again even though my health has deteriated and they know i carn't work.plus they now know i have Lupus. date 18/01/18 in 4 mth the pains with my joints are hurendous my rumatologist Huddersfield wants me to start a caurse o'v serious meds DMARD to slow the disease down. do they care NO

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