If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Receiving too many notifications? Adjust your notification settings.
Epilepsy help and advice - not receiving support, adaptions, equipment

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.
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
Understand that there will be help and support from our community. They will have some answers. All I can say I am sorry what your friend is going through. I notice she has support but you need the right support for your friends daughter.
You are important as well and I am sure all the help you do is being appreciated. Sometimes asking for help is hard to do. I know that myself.
As do many of our community.
All I can add is to look at our posts on talking about specific conditions for any information and advice further.
I hope one of our team can offer a solution.
Take care
@thespiceman
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
You've had some good advice already, and you may also like to consider looking into grants, to see if you're applicable for any to help with the financial side of things. You can find a grants search tool here.
Wishing you and your friend all the best, and fingers crossed you can get some stronger support in place soon. Please do keep us updated and we'll advise where we can!
Sorry for the delay in replying, I've been away from my desk for a few days. It is difficult to advise when I'm not speaking directly to the disabled person/parent as to give a quality response it would be helpful to known what referrals, assessments etc have already taken place and when. Perhaps you could suggest that your neighbor contact the Scope Helpline: [email protected] 08088003333
But basically the things you mentioned need addressing happen from different departments:
Best Wishes
Jean
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist