u/Ashketup007

I’m 25, diagnosed with SLE 5 years ago. Someone recommended I apply for PIP, filled out the form, had my telephone assessment last Sunday and just got the report back today.

The assessor recommended 0 points across every daily living and mobility activity. Her reasoning was that I work full time, wasn’t flaring on the day of the call, and can walk 15-20 minutes on good days. She recorded my flare frequency as 2-3 times per week herself then ignored it in every single justification.

On flare days I can barely cook, shower, dress or walk more than 5 minutes. She assessed my best day and called it my everyday reality.

Has anyone successfully challenged this at mandatory reconsideration? Any help would be greatly appreciated.

Hi everyone. Long time lurker, first time posting. I’ve just received my assessment report and I’m devastated. Looking for advice from anyone who’s been through something similar.

My conditions: Systemic Lupus Erythematosus (SLE), underactive thyroid, anaemia. On immunosuppressants, steroids, and multiple other medications daily.

What happened:

Had my telephone assessment on 26th April. Just received the report and the assessor has recommended 0 points on every single daily living AND mobility activity. Her conclusion is that I am “functioning adequately in all activities.”

The main arguments she used against me:

I work full time (with reasonable adjustments due to my condition)

I wasn’t having a flare on the day of the call

I can walk 15-20 minutes on good days

I go to the gym on good days (I told her I haven’t been in 1-2 months)

No physio or pain team involvement

Medication relatively stable

Why I think this is wrong:

My SLE causes unpredictable flares 2-3 times per week on average. The assessor actually recorded this herself on page 4 of the report then completely ignored it in every single activity justification. She has assessed my best day functioning and applied it as my everyday capability.

On flare days I struggle to cook safely, can only walk 5 minutes before stopping, need grab rails to shower, struggle to dress, and have missed 15-25 sick days since 2026 started.

She also used my reasonable workplace adjustments against me. I work from home more days specifically because of infection risk from being immunosuppressed. She treated this as evidence I have no significant physical limitations.

My questions:

1. Should I get a supporting letter from my rheumatologist at before submitting the MR?
2. Is it worth contacting Citizens Advice before writing the MR letter?
3. Any tips for the MR letter specifically for fluctuating conditions like lupus?

The decision letter hasn’t arrived yet but based on this report I’m expecting a full refusal. I know I have one month from the decision letter to submit the MR.

Any advice or shared experiences would really help right now. Thank you.