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Epilepsy help and advice

Please can you point me in the right direction to get some help for my friend/neighbor that lives in Epsom Surrey.
Her 11 yr old daughter began having seizures 2 yrs ago which are uncontrollable with medication. 
She has them almost daily and is admitted to hospital at least once a month. 
Her brain is shrinking causing brain damage, she had not been to any school as she needs constant care so during the past two years both have basically become housebound.
A social worker and epilepsy team are involved with the family but still have not provided the basic help ie wheelchair, home adaptions or assistance with hospital appointments etc. It's taken them almost two years just to arrange a few hours home schooling.
She is a single mum on benefits & doesn't like asking for help but It's clearly obvious she is struggling. I help as much as possible, with appointments & food shopping but I'm sure there must be professional people or charities that are able to give correct help.
Two years ago her daughter attended school and was doing usual activities a child her age does but since the seizures started neither of them have any quality of life, they are mearly existing which is heartbreaking to see

Replies

  • GeoarkGeoark Member, Scope Volunteer Posts: 1,373 Disability Gamechanger
    Hi Layna, it sounds like your friend could do with some well informed support, I would suggest encouraging her to give the Scope helpline a call 0808 800 3000 it will give them time to go through her various needs and help her. 

    In the mean time, has she checked that she is getting all the benefits that she is entitled to?  She can do this online at https://www.entitledto.co.uk it is worth checking what information to have at hand before starting. 

    Does she have an ECH plan for her daughter? If not she can apply for one herself by googling ehcp application form Espsom it opens the relevent document rather than a web page. She can get free and independent support in filling this form out through https://www.sendadvicesurrey.org.uk/independent-support-through-th/

    Other issues you have raised I am not sure what the best way to access these services may be, possibly having an occupational health assessment?

    However I would go back to my first piece of advice and encourage your friend to ring the Scope help line. As I said they can go through with her what her needs are and offer the best advice on  how to proceed. They may not have all the answers at the time of the call but will get back to her.

    One thing I would say is for families like this social isolation can become a major issue, so having a good friend like you is huge help.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

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