Epilepsy help and advice - not receiving support, adaptions, equipment

layna

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

thespiceman

Hello @layna Pleased to meet you thank you for sharing your story.  About your neighbours daughter.

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

northwestmum2

Sometimes you must 'nag' the consultant your child sees regularly to make them take steps to help- they have more power than a parent in making the other teams etc give you what you need.Also the hospital transport can arrange transport to hospital or clinic appointments.

northwestmum2

Also she can contact the Family Fund as they can help with many things,including a grant for some things if she cant get them anywhere else.or respite care/holidays too.and they have local groups/meetings so they dont feel so isolated.

Pippa_Alumni

Hi @layna, thanks for sharing this with us.

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!

Jean_OT

Hi @layna
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: helpline@scope.org.uk 08088003333

But basically the things you mentioned need addressing happen from different departments: 

•  wheelchair, from NHS wheelchair clinic, GP can referr
• home adaptions, home needs to be assessed by the community occupational therapist, can self refer  or be referred by professionals involved
• assistance with hospital appointments - do you me financial assistance? https://www.nhs.uk/NHSEngland/Healthcosts/Pages/Travelcosts.aspx
  

Best Wishes
Jean