PIP and Epilepsy

MuddlingAlong

Hi everyone. I just got the message saying my PIP review form is in the post, but I'm in some tricky situations, so I hope I can please get some advice.

My medical situation is likely so unusually rare that explaining every detail could likely identify me so I'm sorry if I'm a little vague here and there.

I ended up epileptic around 8 years ago - an issue was found in my brain, then radiotherapy to cure that issue ended up with me being epileptic.

Had uncontrolled seizures for a few years, no pattern, was not frequent, but due to my neurological history (then also later a pulmonary embolism - PE eventually cured), I have been told any time I have a seizure I need an urgent scan to find out if it's "just a seizure", or due to an another (serious) neurological problem, or another pulmonary embolism.

Have even been in ITU close to death due to epilepsy, and I'm unlucky that my "aura" means I cannot speak (or cannot even do text messages, hand gestures might not even make sense). When I have a seizure, takes me anywhere between 3-14 days until I recover (speech/tiredness/confusion being largest issues when recovering)

I can't find my old claim paperwork, but I think I had to "battle" and point out CPIP/1599/2016 which then gave me full points for mobility.

But next time my claim was reviewed - I was not great mentally, so I did a rushed submission, and just gave every single medical record as I did not have it in me to filter and give the best relevant. Seemed no mobility points for epilepsy, lower points for other mobility struggles and I did not have it in me to fight that award.

This time round I would like to fight to get full mobility points due to CPIP/1599/2016, but I'm not sure if it even still applies to me, and my medical records are quite a mess so I hope anyone can please advise me. This also gets tricky as uncertain as likely can affect ability to drive.

The last seizures I definitely agree with were in 2020.

But there have been some conflicting notes about uncertain (partial) seizures 2021-2023.

I am waiting to see my neurologist to get a more definite opinion about issues 2021-2023 but cannot do this before I send my review form.

My honest belief (and much more preferable for driving) is that my last seizures were in 2020. My honest belief is that I still am at risk (otherwise why am I still on antiepileptics), and unfortunately due to my medical history of neurological issues and also pulmonary issues that can lead to seizures, even without having seizures, unfortunately there still would be a risk for me for the rest of my life.

Which makes me wonder if I was to state my honest belief and gave evidence of 2020 seizures could I still get 12 mobility points (1f) due to CPIP/1599/2016?

If I can get 12 points for this reason (obviously less than 50% of the time), if I suspect say 1e applies to me e.g 30 days in a year, and 1d applies 60 days, would DWP apply 1d instead of 1f?

I'm in an annoying situation as I've tried to get an epilepsy alarm for years, but struggled finding one that would work for me, asked social services for advice and told I would get advice, but that never actually happens… If I had an actual alarm I'm guessing that would get strengthen my case - would showing how many times I've been trying about an alarm help me at all?