Epilepsy can affect individuals in many ways and there are over 40 different types of seizures. People with epilepsy experience the condition in a way which is very unique to them and the support they need will vary greatly. This means that many people with epilepsy will not need to apply for benefits such as Disability Living Allowance and Personal Independence Payment.
However, Epilepsy Action strongly believes benefits should be available to people with epilepsy that need them and that people should not be disadvantaged because of their condition. As the impact epilepsy has on people’s lives is so varied we believe it’s vital that benefits should be assessed case-by-case, based on an individual’s needs.
We will be making a submission to the consultation, Personal Independence Payment: assessment thresholds and consultation, to ensure that those who need it get financial assistance. We will ask DWP to take into account the varying needs of people with epilepsy when producing their new guidance.
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Comments
my fiancee has severe seizures quite often so far due to her seizures she has had to have blood transfusions where she hit ger head so hard on pavement she split her head wide open . she has had seizures where she has broken teeth it sometimes takes her weeks to recover by which time she genrally has another one . we have 2 children and she wont use public transport after having seizures on buses and in cabs . she recieves dla but only low rate mobillity is i have taken driving lessons to get a car to get her out and about but am experiancing troubles trying to afford car insurance i am 30 yrs old and i am the only wage in the house low income just wondered if their was any finacial help we could obtain to help with car insurance as this is the only way she can really get about safely i cant afford to be paying £200 a month out for car insurance alone after i have paid bills .
Hi John
Thanks for your comment. It sounds like you’re all having a pretty difficult time.
I’m sorry, we don’t know of any financial help you could get with your car insurance. But it might be worth checking if you are entitled to anything other benefits. A Citizens Advice Bureau could help you with this. Or you could ring Turn2us. They could help you with benefits and explore if there are any grants you could apply for. Their number is 0808 802 2000.
I really hope you’re able to find something you make life a little easier.
Cherry
Advice and Information team
hi john i am 23 yrs old i have had epilepsy for 8 yrs noe and have had no help what so ever . all i can say is i have a dog that detects when i have seizures because i will not use public transport same as your wife . i do not leave my home town because of it, i am unable to work because my seizures are that bad i can be bed bound for days. the bad thing is i have about 1 a week and i can not find any help to register my dog so she can come every where with me . i jus wanted to say i no how your wife feels and if there is anything i can do, even if she just wants a chat, reply to my comment. i hope you can try and solve your problem some how.
Hi my wife had her first seizure 19 months ago aged 36, we have know idea why they started.
She is still having seizures and vacant moments, the medication has just changed so we are hopeful to get some control. My wife would love nothing more than to go back to work, but until she has some control she is unable and not confident to do so.
Our point is that the goverment are under that much pressure to save money they will try to stop DLA and ESA even though she is unable to go back to work. She does not want to sit around she wants to work look at the person not a piece of paper that says,
are you able to walk unaided, of course i am until i have a moment or seizure then i am not.
Thanks Paul.
Comment on John Whittingham not easy for you as well good luck mate.
I hope the Government put a bit more thought when they change DLA to PIP. Anyone out there tried to claim ESA and been placed in the work related groyp with face-to-face interviews? It's an absolute shambles and tax payers money is wasted in face-to-face interviews by interviewing people with long term chronic conditions such as epilepsy, MS, parkinsons etc. A lot of people with epilepsy are being put under a great deal of stress and worry regarding ESA. I'v visited the Jobcentre Plus on a number of occasions to support a member from our support group and to be honest, the Disability Adviser is lost as to what to do. They just end up going round in circles and, unfortunately, take you round in circles too! If you're lucky enough(?) to be placed in the support group for ESA you can guarantee in 3-4 months time DWP will send you another re-assessment form ESA50 to be completed AGAIN!! What for? Why? Who pays for all this? Thee and me! Write to your local MPs, Prime Minister, in fact anyone to bring this mess to their attention and ask them what they intend doing about it. Go on the internet and put Professor Harrington in your search engine - he's about the only person who seems to have any sort of idea what he's doing. Say a prayer for DLA - don't worry about the changes, wait and see what happens first (easier said than done).
I have just had to fill in one of the esa forms and took it to our local CAB, It is such a degrading feeling making you feel like you are an idiot.How do you explain the effect of eplipsy to someone who has never had a seizure, everyones feels different, I am unable to go out alone now after having it for 18 years. Maybe those setting these ridiculous rules for benefits would like to try putting themseves in the shoes of the people they feel should keep filling in these forms
I have just had - a week ago - the first epileptic fit of my life, at age 67. This I know from having worked with people in the past and having seen some have fits. I gather what happened only from my wife's account and from what happened when I was taken to hospital for a stay in the acute assessment ward, where I had various tests - ECG, CT brain scan, blood tests and blood pressure tests.
What would help me enormously would be to have access to your pages and read about the experiences of other people, so that I can inform myself rather rapidly and be more prepared next time for whatever happens. I realise this may be over-ambitious, because I had absolutely no warning of the episode, which was with convulsion, and have no memory of anything until some time afterwards, when I was already on the stretcher being wheeled into an ambulance.
Hi
Yes, we do have a range of information on our website.
You may find it particularly useful to look at developing epilepsy in later life.
If you want to read about the experiences of other people, you may be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. People can find it really helpful to talk to other people in a similar situation.
Or if you have particular questions, you are welcome to ring our Freephone epilepsy helpline.
Hope this helps.
Cherry
Advice and Information Team
Hi i have been on long term sick with epilepsy for a number of years and can have up to 11 fits a day i have both major and minor fits day and night. I also have a number of other illnesses and have been getting high rate disability benefit. The last time i applied for it i was awarded it until 2012 when the benefit changes. I have received a letter from the DWP about my invalidty benefit saying i have been placed in a work related group and have to attend work related interviews. How can two different departments having been given the same information come to different conclusions? One i am fit for work the other i am not and entitled to full DLA
Hi
Sorry to hear about the confusing situation you’re in. Here is some information which might help to make this clearer.
Getting DLA does not automatically indicate you’re unable to work. It is possible to get DLA and be in employment.
DLA is assessed and paid for by the local authority.
Employment Support Allowance is assessed and paid for by the Department of Work and Pensions.
So it is not that surprising that you have two different assessments. If you want to disagree with the group you are in for your Employment Support Allowance, you could always appeal that. We are not benefits experts. So you may want to contact your local Citizens Advice Bureau or DIAL. This is the Disability Information and Advice Services. Either of these organisations should be able to help you.
I really hope you’re able to get it sorted out.
Cherry
Advice and Information Team
Hi,
I've suffered epilepsy for 30years now and the hospital have not yet been able to find the cause if the seizures. I've taken every medication avalible and all mixtures with no success they have tried all tests and even surgery ( taken part of my brain out) and still no improvement as I take up to 18 seizures a month. The jobcentre plus called me in and said i should be trying for jobs.The only permenant job i've had I held for 30 years and got dismissed due to my health.This goverment needs to WAKE-UP to real life. I agree to ending of those how are on fiddle, faulse illments, NOT TRUE ILLMENTS.
Hi, I am 26 years old and have just been diagnosed with epilepsy after two months of black outs and collapsing. I have been pushed from pillow to post before getting proper answers from the hospital. I had to have a lot of time off work, my boss was very unsupportive, making me worry and stress. I have now left my job as I could not bring myself to go back to my job after being made to feel very small. Is there anything I can apply for with regards to any financial support, or travel expenses? I cannot drive due to the blackouts so I have to use buses. This is all very new and very scary, any support or help would be greatly appreciated! Thank you in advance :) Lisa
Hi Lisa
Sorry to hear about the tough time you’ve been having. Our webpage on entitlements should tell you everything you need to know. Free prescriptions and free bus pass are the main ones. You may also be interested in a Disabled Person’s Rail card.
It sounds like it might be good to be able to talk to people about how you’re doing. You could ring the Epilepsy Helpline. And/or you may be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. People can find it really helpful to talk to other people in a similar situation.
I do hope things start to feel easier for you soon.
Cherry Advice and Information Team
I am very worried about this new benefit that will replace DLA. I have had epilepsy for 34 years now due to an accident when I was in my teens. I wasn't diagnosed until I had my first child 24 years ago, The doctor just sent me away stating that my blood pressure was too low and that was why I was having "episodes" until I was diagnosed as epileptic 10 years later. I receive DLA because of the Epilepsy on the grounds that I need someone with me to make sure I'm safe along with a few other conditions. I don't go out alone as I have had many fits outside and once I was even robbed whilst having a fit when I was on my own. I have had seizures on public transport which is very scary so I don't use the bus any more and get taxis everywhere or rely on my daughter to ferry me here and there. I do work 28 hrs per week, a couple of my work colleagues are aware of my seizures so I know I'm OK at work, they come and look for me if I go missing, but I try to keep it under wraps as much as possible as some people are afraid and avoid me, they don't understand so they just avoid. No one claims carers allowance for me as my daughter says that "I'm her mum and she doesnt mind" but I know if the new benefit excluded conditions such as epilepsy that I would no longer be able to work. I rely on the benefit to get me too and from my workplace and cover any transport costs if I go out anywhere. I receive the middle rate of care and the low rate of mobility, this in turn allows me to claim extra on my working tax credit because my wage is just above minimum. If I loose the PIP I will no longer be entitled to the Disability premium of Working tax credit so that would be a double blow. I would be punished twice and be forced onto benefits which would then knock my confidence back to where it was before I found a job 9 years ago. I understand that the decision makers won't be medically qualified, only ordinary staff working for the DWP. Everyone knows epilepsy cannot be forecast, I don't know how many fits I'm going to have this month, next month or next year, I take each day as it comes. Last month I had a few days of multiple fits, the month before I had one day with 4 fits one after the other, the month before none.
Please could you find out how this is going to affect people with epilepsy, they say that it is going to be given to the people who need it most but I feel the people who are able to talk a good talk will benefit and the ones that really need it will be left out.
Thank you