Benefits information for people with epilepsy in England

Hello, I am 26, I have had epilepsy all my life. I was properly diagnosed at the age of 9. My mum has also got the condition. I am completly concious when my fits take place and they only last for ten seconds at a time. I can have up to 30 fits in a day which is extremely tiring.I have medication which controlled my epilepsy until recently. I believe this is down to me taking other medication which is not related to epilepsy. Due to the time i have had off work, i have recently been asked by my doctor to register as disabled. I am very reluctant to do this due to not knowing what the long term implications would be. I do not drive however i would like to in the future. I really dont know what to do next.

Hi, I am 53 yrs old and over the last year I had 2 night time episodes where I found myself on the floor. I then had a full blown fit at work, the only one where I was awake. I was taken to hospital then released but had another whilst asleep at home that night. I have had an MRI scan in July but have got to wait till the end of September before I see a neurologist. I am on an AED and not driving (my own choice) as have not declared to DVLA yet as not yet diagnosed. I take it I cannot claim any travelling benefits until or if, I am diagnosed epileptic in September, is this correct?

I'm asking this on behalf of my future brother in law who has been epileptic for almost 20 years(we think it began aged 13/14) he experiences all types of seizures - grand mal, absences, etc etc.He currently lives with his mother who is now in her mid-60's and given his size (he is well over 6ft, 17stone) he has started to express concern that he is too much for her to deal with and he wants to look into supported living of some kind. No matter what i search for online I keep coming back to care homes for the elderly and whilst i'm sure they are nice I'm trying to find somewhere where they not only understand his medical issues but that will have people in his age group as he seems to be severely lacking in general social skills which we think is a combination of spending so much time with only a handful of people (he barely gets out unless he had a big seizure as the 2 days after he generally is seizure free) and undiagnosed learning difficulties. His mum is doing the best she can but she has a "fear" nobody will look after him properly so i'm trying to gather information about potential options and maybe even some kind of day time group he could spend time with to give him new experiences but also give her a mini break. Any information or advice anyone has would be lovely thanks!

Hiya just wanted some advice i was diagnosed with epilepsy in october im a single mum with 3 children, i had to leave work as they were totally not understanding at all so claimed benefits (DLA) iv just been kicked off this and told to go back to work despite the fact that iv only been diagnosed since october. I tried to explain that im still having fits and that my medication is not up to full dose yet but they said tough!!! any advice would be greatly recieved x x x

Hello,

I need advise i am 36 years old i have had frontal lobe epilepsy since i was 10 i have grandmal & petiemal seizours. I do receive DLA i get the high care compontet but the lower rate with mobility. I have seizours freqent my husband is my main carer i have been trying to get the high mobility rate as i cannot leave my home at pressent as we have no car i need to be acompained where ever i go as do have habit of dropping at the worst of times. I am very worried about the pressure that my husband is under. I no im becoming very hard to live i feel very depressed as i carnt leave my home. Im trying not to take it out on my husband but i no that im not making it easy. I just wanted to ask is there any help i can get as far as help with a mobility car gos.
Please my husband & i do need advice & a bit of support.

hi there i had a accident at work almost 5 yrs ago,where i fell 20ft down a catchpit on my headon solid concrete.i was not knocked out but remember seeing a white flash in front of my eyes.i suffered headaches for a while which i shrugged off with paracetamol.then 6 mnths down the line i had a massive clonic tonic siezure that lasted 40 mins.was refered for tests whichconfirmed activity where i had banged my head.i take keppra 2000mg per day and lamactil 500mg per day split morning and evening.i have always worked so being at home i got depresssion asi was on very good wages.so also i take citropram 10mg in evening for my depression but sadly i now have erectile dysfunction due to the medication and this has severley affected my marraige as my wife is only36.we have not had sex for nearly 5 yrs now but my gp will not prescribe me viagra.my wife is ready to leave me i dont blame her please help

Help me please! I work and I am only have fits at home asleep! I have been homeless living all over and have forgot what it's like to not feel so low because staying here and there I fear will kill me! My X got pregnant with my 14 year work friend,I went and have been homeless from that day! I was very ill but work goes on ,I am a community worker and fear I would run away if ill at work,I get massive depress all the time because I worry about being on the st with my pills! My history in care does not help when asking for help,I am forty two and people still never know what illness I have,epilepsy my doctor just about knows! But he letting me sleep like this,I cannot face the council alone......:..

Hi, My 5 yr old son has eplilepsy but generally only has seizures early in the morning. The seizures can last up to 20mins and we have to administer Midazolam to control the seizure. We've had to replace his mattress a few times now after he's messed himself, and now I have a matress protector. We've had very little advice about how we as a family care for him. I'm particularly worried that I won't wake up when he has a seizure. Hopefully his daily drugs will settle and he'll be seizure free but as he grows no doubt there will be times when the balance will be wrong and he'll fit again. I know that there are alarm mattresses but they are so expensive - are there any organisations that loan these out at all?
Also he attends swimming lessons at school, but the school have asked if we can provide a pool spotter for him as they don't have enough staff for this. Is this a normal request and should we be aasked to do this?

my son has epilepsy, he used to work but due to the illness he had to leave. he is now depresses but has recently had a counselling course which he says has helped him greatly. i have recently heard that there is funding to support sufferers who wish to go on holiday. is there any advice that you could give me regarding this. thankyou.

On this website you have spoken about a spotter for whilst your child is asleep. Could you please advise the best place to buy these? I am not over affluent but would save and push myself to ensure my son is safe at all time. We are still currently getting his epilepsy under control and we are not yet aware the type he has but all the fits have been whilst he has been in bed.

hi,
My boyfriend has an epilepsy for over 5 years now, we both have full time jobs, but we only able to work in the afternoons as he normally have his fits in the morning, i had to change my shifts to afternoons because he needs care when he is fitting, usually after his fit, he looks disorientated and do some weird/dangerous staff like- getting in to bath and turn the hot water on, trying to walk out the windows! also he need someone to cook or feed him as he sometimes is not able to hold his spoon or cook, he once tried to cook a meal but then drop a hot pan and burn his feet that when i had to change my hrs and also had to step down from a supervisor to a lower pay. sometimes we both are late to work or he is not attending at all, we cant progress in the company at all as we both not able the morning hrs... im scared that if we keep coming late to work due my boyfriends fit they can dismiss us
:( we planing to buy a house to have something good in our life but its so hard to get the deposit together, my boyfriend needs a daily care in the mornings, and he needs me to prepare him daily meals. i start work at 13.30 and he start at 16.00 he is not able to drive anymore and he has a free bus pass but sometimes its too dangerous for him to get a bus as he have small fits,so he have to order a taxi which he has to pay £12 one way. Please advise me is the any allowances we could claim like DLA ?

Thank you.

Hi. It certainly sounds like you are finding things difficult at the moment.

Some people with epilepsy are entitled to receive Disability Living Allowance. You can find more information about this on our website. If you would like to receive a guide to completing the Disability Living Allowance form, please contact the Epilepsy Helpline, freephone 0808 800 5050, email helpline@epilepsy.org.uk. To find out if there are any other benefits you may be entitled to, you could contact the Benefits Enquiry Line, freephone 0800 882 200.

I can appreciate that you and your boyfriend are worried about losing your jobs. You may find it helpful to know that, in England, Scotland and Wales, people with epilepsy and people who care for them are covered by the Equality Act. This makes it illegal for people to treat them unfairly because of their epilepsy. The Equality Act means that employers have a duty to make reasonable adjustments to help people with epilepsy stay in work. You can find more information here: Epilepsy and the Equality Act.

Finally, as your boyfriend’s seizures are having such an effect on his daily life, has he spoken to his epilepsy specialist about his treatment? The specialist may suggest making changes to his epilepsy medicines, or even see if there are any other treatments, such as vagus nerve stimulation, which may help him get better seizure control.

I hope this helps.

Amanda
Advice and Information Team

I don't know whether I will be able to claim any benefits. I have epilepsy as a result of a right occipital lobe tumour which was removed as far as possible in September. I am currently on ssp from my full time job. I have about 4 to 6 weeks left of this. Currently my epilepsy is not controlled by meds, I am am experiencing dizziness and extreme tiredness. When my GP finally approves me to go back to work, work have stated they will probably send me for a medical which at present i would not pass. When my ssp runs out will I be able to claim any benefits. Any assistance would be appreciated.
Thankyou