LUpus Patients Understanding and Support
2,666 members596 posts

PIP Tribunal - was awarded then taken away all within 2 months!!


I have just submitted forms to go to tribunal to appeal my PIP decision.

I applied in June (ish) time last year, had a medical (Capita) in October last year and was awarded Standard Daily Care and Enhanced Mobility. I rang to 'query' a couple of things where they had given me 0 points but I felt I should have scored some. I was only 1 point off Enhanced daily care and if the report had recorded what I had explained to the assessor I would have got this!

What I didn't realise was that they would do a full reassessment!!! All they said on the phone was that my query had been recorded and someone would be in touch after they had investigated!!

The next thing I know I receive a letter to say they have done a full reassessment and following receipt of my Rheumatologists report which they had only just received they were only awarding me Standard Mobility and no Care at all!!!

I asked my MP to contact them to ask them to reconsider and he did and they still said no and that I had to take it to tribunal. After speaking to CAB they gave me some advice for filling in the forms so I did and now I am awaiting the tribunal!

The thing is I had a similar thing when I applied for DLA around 4 years ago they turned me down flat and at tribunal they basically humiliated me (I was alone) which sent me into flare and I was in pain for days. I don't know what else I can do. I am scared of being humiliated again. In fact I think I read a story where this happened to someone else and when they went to tribunal the second time they said they should have been getting the award from the first time they applied, so it was all backdated!! (I can dream can't I??)

Any advice would be most appreciated. We had put care and help into place when I first started receiving PIP but when they took it off me after only a couple of months we have had to stop all of that as we cannot now afford it :-(

One final thing they are saying that because I still drive (only to get kids to school and apointments, (because I HAVE to) that means my cognitive function is not affected??!!! how do I explain that this is not the case? Just because I may be fine to drive at one point in the day doesn't mean I am not laid up on the sofa all drugged up for the rest of it! (You know what i mean). Thanks.

2 Replies

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I am very sorry you are having this experience. I wish I could tell you that this is not usually the case, but sadly it seems the object is to deny people, like you, while allowing others disability. It is always advisable to describe how you are on your worst day. I also advise that someone accompanies you, even if it is a friend who can support you. You are already vulnerable and being alone emphasises your helplessness in the face of unsympathetic bureaucrats who usually do not know anything about lupus. I do not know whether you can get more advice from Citizens Advice Bureau, I would try anyway as it cannot do you any harm.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available. There are Members who have been through this experience and may be able to help.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!



Hi Annalouk,

Go to this website you have to pay £20 to become a member, but they tell you on there what they look for when filling forms in etc. It's a fabulous website and I urge you to look there as it may help your appeal.

I hope you get reinstated as I think it's awful they have treated you like this. I get in a panic whenever I see a brown envelope now !!

Good luck and please visit the site as its so helpful.



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