I need some help with information about epilepsy (look in additional info)

[lizziestone]

Hi there,

So i know this is a very basic question, but is epilepsy classed as a disability?

What are the needs of someone with severe epilepsy?

What services does someone need access to if they are suffering with epilepsy?

Do you think they need home adaptations?

Are they ok to live alone? or do they now need to live ith someone else e.g. carers, family etc

Can they still work as a plumber?

Sorry for so many questions, but i need to know about epilepsy, and if anyone is willing to help me out i would be incredibly grateful,

thank you

[ecossaise]

Hi there,

I can't fully answer your questions as I'm "just" a sufferer and not a medical expert. However, to answer some of your points

1) It does depend on what you are classing as "severe" epilepsy and if it is in any way under control with medication. If it is so severe that it is causing the sufferer to be able to continue working, then there are benefits available and used ot qualify for what was called Disability Living Allowance - it has changed its name now I believe - but I received that before my seizures were brought under control - this was only just over 3 years ago so the "disability" classification could well still be in place.

2) As for living alone - I was on my own for the 5 years before the doctors found a medication which worked to control my seizures. At one point, I was having several major seizures a week and regularly coming round ot find myself in A&E!!. I had two pieces of special "equipment" - firstly, the simple fitting of an outdoor "keybox" - with a code known only to people I wanted to have it - that gave instant access to anyone in a crisis. More sophisticated and VERY important was the installation of an alarm system which involved me wearing a disc - which was tuned into a phone alarm - if I went suddenly from vertical to horizontal, the disc set off a phone alarm - to a central control office. They would then call my phone number and if they got no answer, they sent the paramedics round. That saved me quite a few times. Sorry that I don't know the technological terms to describe the system but I hope you can get the idea.

Other safety advice I was given was a) never lock the bathroom door - even if you aren't alone at the time - in case you have a seizure while in there and gaining access to you would obviously be difficult from behind the bathroom door. If not doing that, fit a child lock - which lets someone from outside accessing the lock.; b) if possible, don't have a gas hob as the danger of being badly burnt if you had a seizure while cooking would be much greater with a gas flame than with an electric/induction hob; c) buy an iron that automatically switches off if left on its base for more than 10 minutes - that makes it very unlikely that it will cause a fire if you have a seizure while using the iron.

I'm sure there are dozens more that others can give you - but that's a starter.

The other wonderful thing is the support and information you can get from this website - it has helped me immensely and makes you feel much less frightened and alone.

Cheers

Ecossaise

[lizziestone in reply to ecossaise]

Thank you so much, this was a huge help!!

[SandyH]

Epilepsy is classed as a disability, some can be controlled some can't. I have 2 types and a right hand shake due to surgery twice for my epilepsy, plus my epilepsy is drug resistan. So I was medically retired from the government I worked for and I'm classed as severe and I will never be able to work again. Hope that helps.

[lizziestone in reply to SandyH]

Thank you very much, thats so helpful!

[ecossaise]

Not more actual info - just me re-reading my original post and noticing several typos etc! Sorry about that. The main one is that I did of course mean to say "causing the sufferer to be UNable to work!!"

I'm glad my post was helpful to you and I see that your question about the disability classification has been answered fully by Sandy H.

Cheers

Ecossaise

[EpilepsyInst Partner Epilepsy Research UK]

Dear lizziestone

The support charity, Epilepsy Action, has a helpful leaflet about benefits that may be available to people with epilepsy. It can be found here: nhs.uk/ipgmedia/national/ep...

Best wishes,

ERUK-RI

[xyz123]

Another 'tool' we are considering is a video camera accessed by a remote computer, that could be scanned by a carer at regular intervals or when an alarm is activated. Thumbs up for modern technology.

Always use a shower, not a bath.

A lot of cooking can be done in a microwave, which automatically turns off after the preselected time.

Make sure to take a helper who knows you well to any benefits interviews. If you can't drive for medical reasons ie epilepsy you are entitled to a bus pass.

Hope these bits help.