Epilepsy, 19, where to get help?

grandmasam

Hi everyone,
I am asking on behalf of my dgd, age 19. I have asked the young epilepsy group and it seems that, once she left school there is no support, help or advice on either looking for work or for what benefits she may eligible.

Dgd has grand mal seizures, usually at night, and is on several strong medications. These affect her memory, she has to write instructions down,and is now on antidepressants as not working and having no money is getting her down. Also , she talks very slowly and sometimes shakes, another side effect! She lives at home with her mum, who is working.

She applies for many jobs, [ and I have helped her write the applications ] and has even had some interviews, as soon as they discover the disease, she is unsuitable.The further education courses she has applied for mean that if they involve, scissors, knives or a possibly unsafe environment should she fall with a fit, they are unable to take her.

I was a training adviser and lecturer when I retired and I am appalled at the lack of support for Epilepsy,! I have another dgd, 12, who has type 1 diabetes and the difference in help, support for the whole family, and ongoing advice is very marked.Until this started, age 12, she was a bright, bubbly girl.

Has anyone got any other avenues, or advice please?

Many thanks
Caz

Mojisola

Have you been in contact with https://www.epilepsy.org.uk/info?from=main-nav as she's now an adult.

emmsie123

She can put in a claim for esa and pip.

grandmasam

Thanks Mojisola will follow up that link.

Emmsie She has been refused pip as she only needs a carer i.e. her mum, at night and speaking, to Young Epilepsy, she would only get pip if she needed a carer full time, for at least 16 days per month. The fact that it's every night doesn't count!


Caz

emmsie123

Have you got pip confused with something else as that is not how it works at all.
Pip is based on what you can and cant do not on weather you need a full time carer.
Think youve been given wrong info.
You need to google the pip descriptors.
She should pass on quiet a few being epileptic.

pandora205

The new Education, Health and Care plans cover young people with special educational needs up to 25 years who are in education or training. If your grand daughter wished to get back into education, this could be a route to request to the Local Authority, with a view to suitable support within education or training.

vlad

I have both conditions and you are correct the difference in support is shocking,it does sound like you have been given poor advice on PIP and i suggest you speak to welfare rights if you have one locally,or CAB
You might also want to look at the advice Epilepsy UK offer,sorry can't post links yet but easily found
Just one other point i assume she sees a neurologist?if so does the hospital have a epilepsy nursing support?they can be a great help(tbh often more useful than the neuros in some ways)

System

If she "only" has seizures at night that doesn't qualify her for pip , have a look here there's lots of helpful people

http://forum.epilepsysociety.org.uk/


Is there any form of supported volunteering locally ? Although it failed for my daughter it may just be because Rotherham has a warped idea of what the word support means !!

emmsie123

I know several people with epilepsy who get both esa and pip.

System

emmsie123 wrote: »

I know several people with epilepsy who get both esa and pip.

My daughter gets ESA &DLA , I do remember reading somewhere if the person "only" has nocturnal seizures this isn't seen the same as someone having day time ones ,this is from the Epilepsy forum uk site

In ESA the work capability assessment criteria awards points between 0 , 9, 15. for each criteria and you need 15 points across the whole assessment to be declared unfit for work. It can be hard for people to understand why they didn't get 15 points but when you read the complete criteria its easy to see why.
For example the one used by most people with E is no 10
10. Consciousness during waking moments.
10(a) At least once a week, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration. 15 points

(b) At least once a month, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration. 6 points

(c) Neither of the above applies. 0 points
lifted from https://www.google.co.uk/url?sa=t&rct=j ... 1339,d.ZGU

To translate that - if you have a seizure while awake once a week you will get 15 points but if you only have sleep seizures you will get zero points

Mojisola

grandmasam wrote: »

Dgd has grand mal seizures, usually at night

CHRISSYG wrote: »

For example the one used by most people with E is no 10
10. Consciousness during waking moments.
10(a) At least once a week, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration. 15 points

(b) At least once a month, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration. 6 points

(c) Neither of the above applies. 0 points
lifted from https://www.google.co.uk/url?sa=t&rct=j ... 1339,d.ZGU[/I]

grandmasam - you say her fits are usually at night - presumably then she does have some during the day - would she be able to get 6 points?

Check the other criteria and see where else she would be able to claim points.