Help me get the social care I need to live

0 have signed. Let’s get to 1,500!

My name is Nikkita Otu. I’m 29 years old and have a 9 year old son, yet I’m completely dependent on my dad. I have severe epilepsy, and sometimes I have as many as 30 seizures a day. This means it’s not safe for me to do day-to-day things alone, such as cooking, showering or going to the shops. My elderly dad puts his life on hold to look after me - but the truth is I am in urgent need of proper social care.

My father is not going to be able to look after me forever - and it isn’t fair on him. My condition is unpredictable, and my seizures can often be life threatening - especially if I’m alone. There have been times when my dad has found me having a seizure and choking, and he’s had to clear my throat to save my life.

My local authority - The London Borough of Merton – assessed me for social care and offered me a carer for just five minutes, three times a day. For an unpredictable condition such as epilepsy, this puts my life at risk. Instead, they have given me the alternative of going into a care home and my son being put into foster care. Clearly, this is never going to be a realistic option; I can’t give up my son.

I need a carer who could be with me for a large part of the day or night, in order to give my dad reassurance that I am being cared for, and a break from being my carer. I would like a carer I can
build a relationship with. I am only 29, I just want to live my life.

And this is not just about me. A recent survey of over 10,000 people with neurological conditions such as epilepsy, MS and Parkinson’s found that 45% of respondents receive care from an unpaid carer such as a friend or family member*.

I’m calling on the London Borough of Merton to meet my social care needs. But I am also calling all political parties to commit to invest properly into adult social care, which faces a £3.6 billon funding gap by 2025 just to stand still**.

Millions of people like me are dependent on overstretched, unpaid carers - with serious knock on effects on us and them. New reforms need to be implemented urgently and must ensure that care is free at the point of use for disabled adults, as well as for older people, as set out by the Care and Support Alliance.

Please sign my petition so that I and others like me can get the social care we need for a dignified

* Data from the National Neurology Patient Experience Survey 2019, The Neurological Alliance.
** Data from The Care and Support Alliance