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Help With Epilepsy

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bobbybilly
bobbybilly Community member Posts: 1 Listener
in PIP, DLA, and AA
Hi All

I hope someone can help or point me in the right direction with some help for my son who has Epilepsy.
Two of my son's have Epilepsy caused by a Brain issue called Subependymal Heterotopia. One is fine if he takes his Medication, he is only on a low dose of Tegretol.
The other has to take a massive dose of Epilim and Tegretol to keep the seizures under control but still has absences. We aren't sure whether it is the Medication or the effects of the Epilepsy but he has some serious anger issues sometimes and is very tired and his Blood tests show some issues. He also suffers from Heart Arrhythmia which maybe caused by the medication. He has serious Anxiety when even going out of the house. 
Both I and his Mum are both 63 and have semi retired. We both work for the NHS with 84 years service.
We cannot keep working to help our son so is there any kind of financial help we/he can get to help out.
We are not scroungers and have financed our son for years but it is getting to the point when we can't.

Kind Regards Rob



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  • chiarieds
    chiarieds Community member Posts: 16,127 Disability Gamechanger
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    Hi @bobbybilly - & welcome to the community. Presuming the son you mention is over 16 years old, you could look into claiming PIP. Whilst this is not based on a diagnosis, rather a person's functional ability to reliably do certain activities/descriptors, it may be appropriate here. PIP is also about how you are the majority of days, but dependent on the severity of his epilepsy, & how he feels after an absence, it may be considered that he needs supervision so he doesn't come to any harm (even if he isn't supervised) & thus may gain some points even if he isn't affected the majority of the time.
    First it's important to understand these descriptors & how points may be gained, so please see: https://www.cambridgeshire.gov.uk/asset-library/personal-independence-payment-descriptors-and-scores-april-2022.pdf
    Please have a read through, & come back with any questions.

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  • poppy123456
    poppy123456 Community member Posts: 55,125 Disability Gamechanger
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    Does your son currently claim any benefits at all? Are they working? Do they live with a partner?
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
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