PIP application for Epilepsy

pistonbroke1

Newbie to this board so please forgive me if there are pevious posts on this subject.  My daughter had several fits last year but was unable to obtain a timely referral to a neurologist via her GP, so we paid for a private conultant in October 2022 where she was diagnosed as having epilepsy. Following that the consultant referred her back to the GP for an NHS consultation.  She cannot get an appointment until September this year 2023. In the interim, she needed to change her medication because of side effect but her GP refused to do this as she was already seen a consulatant, albeit privately.  So she had to pay again to obtain a new presscription for the new meds she needed. I have reently considered submitting an application for PIPs for her on the basis of her epilepsy aand I know that such an application is difficult for this condition.   She has only a limited written report from the original consultant identifying the epilepsy.  Should I wait to submit the PIPs application until she eventually sees the NHS consultant.   and, any advice about how to speed up the referral to the NHS would be appreciated.

peteuk

PIP is not based on diagnosis but the effects it has on life.

Things to consider is how often is she having seizures now? Are her medications controlling this, you've noted side effects from medication, is this still the case.  Does she get any warning about seizures?

Consider, from a daily living point of view, what extra needs does she have in the activities (Cooking, Eating, Bathing, Dressing for instance) does she need supervision

You probably wont speed up the NHS referral, especially if she is now on medication that is controlling it. But what do you want from it?  If its a letter to confirm the diagnosis, given the private diagnosis could you not use a letter from them, or from your gp confirming the diagnosis, medication etc.  

Alice_Holt

https://www.epilepsy.org.uk/living/benefits/personal-independence-payment-pip-and-epilepsy

https://cpag.org.uk/welfare-rights/resources/article/‘safely’-personal-independence-payment

If the fits are uncontrolled and without warning, and there is a real possibility of harm occurring, then she cannot be considered to be able to undertake PIP activities safely and a Daily Living award should be made - particularly around the cooking and bathing descriptors. Also a mobility award is possible if she is unsafe around traffic / roads without supervision. 

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/718722/adm15-18.pdf

PIP does not depend on a diagnosis. It's the impact of the disability which is paramount.

Grumpy_chap

As others have said, PIP is not automatic for having epilepsy - it depends on impact to daily living.

In cases with epilepsy, it can often be the case that the impact is below the threshold for PIP. 

You have not mentioned how much the ongoing impact is to normal daily activities.  It is entirely possible to have epilepsy sufficiently well controlled that the impact on daily living is inconsequential.  I hope that will be the outcome for your daughter.

Spoonie_Turtle

Do also note that the impact of a condition includes side effects from medication.  That itself that might not reach the threshold for PIP but what matters is the combined, overall impact for each activity.

Edit: typo

Bigwheels1111

Break down each question, be graphic. Don’t hid thing just because it’s embarrassing.
Has she burned herself spilling hot water dropped knives etc while cooking.
Spilled hot drinks, trouble holding or cutting with knives.
can she wash and dress safely on her own.
Any toilet accidents etc.

elsien

So her fits were last year which suggests that they may now be better controlled, and the new medication has managed the side effects?
How old is she - just wondering because you talk about applying for her which implies she’s not old enough to apply for herself so some of the daily living tasks might be ones that you do for her anyway as with any other child of her age?
Just putting that out there because those are all factors which may affect the likelihood of anything being awarded.

pistonbroke1

Thank you for all the helpful comments