Why I’ve launched a petition for better social care – Nikkita Otu

My name is Nikkita Otu. I was 18 when I was diagnosed with severe epilepsy, but I started having seizures as early as 18 months old. There were years in-between when I didn’t have any seizures, but when they returned, they got worse. Now, I’m 29 years old, and a mum to my son. I can have up to 30 seizures a day. Sometimes I have to be put into a coma to control them. It’s been a lifelong thing.

I studied media and advertising at school, and I’d love to get back to that. But my epilepsy is holding me back. When people ask me what I do, it makes me feel quite worthless when I say “nothing”, because sometimes people assume I’m lazy. My illness dictates everything about my life, including when I go to sleep, when I can leave the house, and other very basic things like that. It takes away my sense of self. I just want to be whatever it is to be me again. I haven’t been myself for a long time.

I’d like to get back a sense of normality, because there is no normality with epilepsy. This has affected my mental health greatly – it’s a constant battle between seizures and anxiety. It feels more like existing than living. Everyone’s waiting for the next seizure, whether that’s in an hour or a day. It’s a constant ticking clock for everyone in my family. I want to be able to go out and do things with my son. He’s only 9 years old but has seen me in the ICU (intensive care unit), he’s seen me fall down the stairs, and other things that no mother wants their son to witness. He doesn’t like being alone with me in case I have a really bad seizure. I can’t take him to the cinema or swimming. If no one’s around to take us out, we just sit in the house.

My care needs are so severe, I need someone to be with me for the majority of the day. They have to be able to administer my medication, take me to appointments, to be with me when I have seizures, to look after me so I can have a bath, and to be with me to keep me safe when I make myself something to eat. I’d love a minimum of 2 days a week where I have a carer so I can bathe safely, make a cup of tea, or maybe leave the house. These are basic human needs.

When I turned to the council to have my needs assessed, they weren’t at all helpful. I was told I could go into residential care and have my son put into foster care, or I could have a district nurse visit me three times a day for five minutes. I can’t afford a private carer – it’d cost me about £30,000 a year. But I’m left with no option but to continue relying on my elderly father for care. My dad does everything he can, but I don’t want him to have to. I find it demoralising.

There are others like me in desperate need of help. It feels as though decision makers don’t care at all. If I could, I would ask them: would you want to go into residential care at 29? Would you put your son into foster care? At some point my dad is going to die. Then what do I do?

I’m calling on my local authority, and all political parties, to take my needs seriously. Please support me by signing the petition. Help me get the care I need, so I can have a life.

Nikkita Otu is an expert by experience and media volunteer for The Neurological Alliance