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Benefits for people with epilepsy

This information is for people in the UK. If you’re outside the UK, your local epilepsy group may be able to help.

If you have epilepsy, or care for someone with epilepsy, you may be entitled to benefits. On these pages we have information about the benefits that are likely to be most relevant to people with epilepsy and their carers. What benefits you can claim and how much you get depends on your individual circumstances. To find out what benefits you and your family are entitled to, you could use an online benefits checker like Turn2us.

Read on for a short summary of each benefit, or click on a benefit name to find out more about it.

Access to Work If your epilepsy affects your ability to do your job or means you have to pay work-related costs, Access to Work grants can help pay for practical support.

Attendance Allowance A benefit to help with personal care if you have a disability and are 65 or over.

Blue Badge scheme Allows you to park close to your destination if you have severe mobility problems.

Carers Allowance  If you look after someone with epilepsy who has substantial care needs, you may be entitled to Carer’s Allowance.

Disability Living Allowance (DLA)  A benefit to help with the extra costs of looking after a child who has a disability or health condition. In Northern Ireland DLA can also be claimed by adults.

Disabled Facilities Grant If your epilepsy means you need to make changes to your home, you might be able to get a grant from your local council to help. Disabled Facilities Grants are not available in Scotland.

Disabled Persons Railcard You may be entitled to a Disabled Persons Railcard to get one third off rail fares in England, Scotland and Wales.  

Employment and Support Allowance (ESA)  A benefit for people who have an illness or disability that makes it difficult or impossible for them to work.

Free bus pass If you would be refused a driving licence because of your epilepsy, you may be entitled to free or reduced price bus travel.

Free prescriptions  If you have epilepsy and take epilepsy medicines, you are entitled to free prescriptions in the UK.

Personal Independence Payment (PIP) A benefit to help with some of the extra costs of living with a long-term health condition or disability. PIP is not currently available in Northern Ireland.

 

Code: 
F136.01
  • Updated January 2016
    To be reviewed January 2017

Comments: read the 28 comments or add yours

Comments

Hi there my son who has just turned 3 has nocturnal epilepsy which his was diagnoised with in May of this year he is on sodium valproate 7ml twice a day but his behaviour has changed so much it breaks my heart his become very violent and hyper he dose not listen anymore please can you give me advice in what to do thanks for your time

Submitted by Karen Hurley on

Hi Karen
Thank you for your post regarding your little boy. It must be so upsetting seeing him  having such problems.

Mood and behaviour changes are unwanted and common side-effects of sodium valproate. There is more risk that your son will get side-effects in the early days of taking his sodium valproate. Once his body has had a few days or weeks to get used to taking it, they should lessen or disappear completely. If they don’t, talk to his doctor. They might make changes to his sodium valproate to lessen the side-effects or they may change him to a different epilepsy medicine altogether.

The doctor will not only look at his medicine but they may also ask questions about his seizures. Sometimes, difficult or unusual behaviour can be caused by the child’s seizures and the frequent abnormal electrical activity in their brain.

I hope this is of help and something can be done to help your son.

If we can be of any more help, please feel free to contact us again. You can contact us directly, either by email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane Wallace
Advice and Information Team

Submitted by Diane, Epilepsy... on

I have tried to pip twice now and have been turned down my seizures are not under control I need constant supervision as I have a senses and cannot go out alone is there any other help I can get as the strain on my family is awkward

Submitted by Linda mcdowell on

Hi Linda
Thank you for your post. It’s terrible the strain having uncontrolled epilepsy can have on the family.

If you haven’t already, you could do a benefits check with Turn2us. Turn2us is a national charity that helps people check they are getting the financial help they need. For example, welfare benefits, charitable grants and support services. You can do this online or by freephone 0808 802 2000.

If you decide to apply for PIP again we have information on PIP and epilepsy that includes details of benefit advice organisations.

As you are still having seizures, I'd like to check that you are still seeing a specialist. There are many different epilepsy medicines available, so it could be worth discussing your treatment with your epilepsy specialist. They can review your treatment and look at other possible reasons for your seizures to still be happening. They may suggest trying a different epilepsy medicine.  If you have tried various types of epilepsy medicines, it may be the specialist could look into other treatment options for you.

You may also find it helpful to view our safety and daily living aids information. There may be something on there to help you and your family.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane. Epilepsy... on

my brother has had epilepsy now for 4 years its drop so he never knows its going to happen he has had a few fits last few days and been to hospital he makes no sense at all confused saying he has electric running through his body etc the hospital have now sent him home he was on his own luckily been found but still very confused,should he off stayed at the hospital clearly still not right im at my witts end need help.
also do i let social services know to get some help? x

Submitted by kim on

Hi Kim
Thanks for your message. It sounds like a worrying time for you and your brother. It’s difficult to say if he should have stayed in hospital, but it sounds like it would be a good idea to get medical advice about the symptoms he’s experiencing. He could speak to his GP, or his consultant or epilepsy specialist nurse if he has one.

If he needs extra care and support adult social services may be able to help. You can find more information about getting care and support from NHS choices.

If you have any further questions, or would like to talk anything through with one of our trained advisors, please feel free to contact the Epilepsy Action Helpline.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Hi, my future wife is unable to drive due to her seizures, I know she is entitled to a free bus pass but she doesn't like taking public transport just encase (she had a friend seizure onto tram tracks) she is making me learn to drive so I can take her places, will we be able to replace the free bus pass with something towards the running of a car?

Submitted by Thomas Clarke on

Hi Thomas
Thank you for your question.

It can be a worry for people when they go out, especially when their epilepsy isn’t controlled.  But unfortunately it’s not possible to transfer the funding for the free bus pass to running a car.

If your partner is not able to make a journey on the bus without a companion she may be entitled to a pass that allows a companion to travel with her for free too. She will need to make enquires with her local authority who provide the bus pass.

Some people with epilepsy choose to wear identity jewellery or carry an ID card with them to let other people know that they have epilepsy. On our epilepsy awareness cards she can write what someone should do to help her and who to contact. If you would like some awareness cards please email or phone our helpline team.  Or you can order a card from our online shop.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

If we can be of any more help, please feel free to contact us again. You can contact us directly, either by email helpline@epilepsy.org.uk  or phoning Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Hi my daughter has recently been diagnosed with interictal fronto-temporal epileptic activity. She has not been able to learn to drive. Does this mean she is entitled to free transport? If so can you please tell me what we have to do.
Thank you for help with this matter.

Submitted by Caroline Bellingham on

Hi Caroline
Thank you for your question.

Your daughter is entitled to a Free bus pass if she would be refused a driving licence because of her epilepsy. What the pass entitlements are will depend on where in the UK she lives.

She can also apply for a Disabled Persons Railcard . With this cards she’d get one third off rail fares in England, Scotland and Wales.  

If your daughter is unable to use public transport to get to work, or she needs to travel as part of her job, she may be entitled to Access to Work.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Hi, my son is 14 months old and has multiple drops a day, he has just been awarded middle rate DLA, would he be entitled to any kind of mobility allowance towards car, as i would not be able to take him out on public transport ?
Regards Lorraine

Submitted by lorraine hedges on

Hi Lorraine
The main scheme to help with the cost of a car when you are disabled or have a disabled child is the Motability Scheme, but to be eligible for this he would need to be awarded the higher rate of the mobility component of DLA.

You can find information about possible sources of funding to buy a vehicle from the Forum of Mobility Centres. You could also use the Turn2us grants search tool to see if there are any charitable grants you may be able to apply to for funding.

I hope this information helps. If you have any further questions please feel free to contact the Epilepsy Action Helpline.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Hi,i was born with severe epilepsy and i have not been able to work since i was 18yrs old due to my anti epilepsy medicines and i had major brain surgery on my left lobe in 2002 hope to be seizure free , until yesterday i was in the support group on benefits they have now turned round and said ive got to go and attend work groups when i have more then 10 simple partial to complex partial how iam i suppose to keep a secured job when iam always tired my assessment did not go to plan with all my medical evidence from specialists and my GP .. Iam confused .

Submitted by Lucy Earnshaw on

Hi Lucy

That sounds like a difficult situation. I am guessing you’re talking about ESA. I have linked you to our information on this. It includes a section on what to do if you’re not happy with a decision of theirs.

But as it sounds like this is a decision which you have just been told, I suggest you ask them to put it in writing, together with their reasons for the suggested move. Then it might be easier to challenge.

I hope you are able to get to a good solution.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by todd at Epileps... on

My 3 year old has been having 'fits' for as long as i can remember. I was 9 times out if ten at night. I was told by her consultant it was spasms and the screaming was behaviour due to her learning delay. She has a major fit a week ago and now they realise what ive been saying its not just a fit. Shes due a eeg on the brain in a couple of weeks. Im not sure what to expect and worried.

Submitted by Julie on

Hi Julie

It sounds like you and your daughter have had a difficult journey. But at least you might get some clearer answers now.

Here is our information on diagnosing epilepsy in children.

You might find our questions to ask your doctor useful.

And here is our information for carers of people with epilepsy and a learning disability. I don’t know if this applies to your daughter at all, but thought it may be useful because of you talking about learning delay.

If your daughter has another seizure and you feel okay about videoing it, a consultant always find this really helpful in making a diagnosis. You might also want to use a seizure diary. This can become a useful record to show the consultant what has been happening for your daughter.

I do hope that this information is useful for you. And that you get a clear way forward with your daughter’s care soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by todd at Epileps... on

can my employer sack me knowing I have had epilepsy since I was 11 and have been working for them 33 years

Submitted by Michael Mawson on

Hi Michael

No, your employer can’t sack you ‘because you have epilepsy’. There would have to be a particular reason to do with your work.  Here is the particular information for what to do if you feel you’re having problems at work.

If you would like to talk this through, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Regards

Cherry  

Epilepsy Action Helpline Team

 

Submitted by todd at Epileps... on

Hi, I have been suffering with Epilepsy for the last 30 years, I was receiving the HIGH RATE for mobility from DLA, In April I was asked to attend a medical for PIP, The assessor DID'NT ask me ANY QUESTIONS about my Epilepsy & how it effects my daily routine. I have & do suffer up 4-5 seizures in a day and have ended up in A+E on MANY occasions & been admitted into hospital. I was admitted into hospital on Sept 13th 2015 after suffering 4 seizures in a day I was in for 3 days. YET I have been refused the higher rate on PIP. I had to return my mobility car aswell, I appealed BUT my appeal was refused on the grounds that I DID'NT provide medical evidence to back up my appeal when I rang PIP to lodge my appeal I ASKED the lay IF you require I CAN PROVIDE ALL & ANY MEDICAL EVIDENCE YOU MAY REQUIRE
I was NO IF WE REQUIRE ANY WE WILL CONTACT YOUR GP. FOR SOME REASON THE ASSESOR ASSESSED THAT MY SEIZURES LAST 5-6 MINUTES AFTER WICH I REGAIN MY SENSES THEREFORE I CAN TRAVEL ON PUBLIC TRANSPORT. I AM VERY VERY STRESSED OUT AT THE MOMENT & SUFFERING MORE SEIZURES. PLEASE can you advise me how to resolve this situation.

Submitted by SOHAIL BAIG on

Hi Sohail
I’m sorry your appeal didn’t see in your favour. It can be such a stressful time.

When an appeal is unsuccessful, you can ask for a more detailed explanation, this is known as the ‘statement of reasons’ for the decision. You have one month from the date of the tribunal decision in which to do this. Once you have read the statement of reasons, it should be clear to you how and why you have not been successful.

As you disagree with the decision, you may be able to appeal further to an ‘Upper Tribunal’. You can only do this if the tribunal has made a legal error. For more on appealing to Upper Tribunals, see Disability Rights UK website or talk to the Citizens Advice.

Regards

Diane
Epilepsy Action Helpline Team

Submitted by Diane, Epilepsy... on

Hello, I am a 36yr old who has had to stop working because of my epilepsy. My wife doesn't want me to work but we can't live off her salary alone as we have a mortgage and 1yr old baby. I do get paid £416 a month PIP benefit which is great but I may have to look for another job if I'm not eligible for anything else. I have completed various things online, but it's probably better if I go and speak to someone bout my situation. Can you advise on where to go and who to see and email me the details? I live in Stafford. Any help is appreciated. Thanks

Submitted by Dan Scattergood on

Hi , my 13 year old daughter has just been diagnosed with epilepsy she has tonic chlonic seizures which can last 5 minutes or more she has just started medication , I am worried about her safety at school and was wondering would it be better to home school for a year and also is it safe for her to go swimming? . The seizures only started 6 months ago and our lives have it feels been turned upside down, I need to keep my daughter safe .

Submitted by Debbie on

Hi Debbie

It can be really worrying when your child is diagnosed with epilepsy, especially if she has had long seizures. But once your daughter gets on the right dose of the right epilepsy medicine, there is every chance that her seizures will gradually stop. And as her seizures get under control hopefully it will be possible to feel less concerned for her safety.

Here is some information you and your daughter might find useful:

Education

Young people

Safety

Sport and leisure

I wonder if it has been possible to talk to your daughter’s teacher about your concerns over her safety at school? As you can see from our information on school support, there are various things that they can put in place. In particular an individual healthcare plan would be worth discussing with them.

If your daughter wants to go swimming, for the moment it would be good to have someone either in the water with her, or nearby, to keep watch.

For the moment keeping a balance between having her safe and helping her to get the message that her life does not need to stop, will be a tricky one. If possible it’s always good to look and see if, with a little adjustment, such as the swimming example, it is still possible for her to do what she wants. And hopefully she will be happy to explore ways to help you with your anxiety about her too.

I hope this information is helpful. If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Regards

Cherry
Epilepsy Action Helpline Team

Submitted by Cherry, Epileps... on

Hi everyone. I have a big stress.
I have epilepsy its not control with medication. I forgot the name the kind of epilepsy... My brain stop if i have something on my hand folling down. One time a stoped on the middle zebracross. I cannot find work. Because the people have to supervise me. I had chocks on the cars... Elevators. When i open lights sometimes pufff. And my uncle have to change all the time the lights. Sorry about my english xD two times i was making milk for my baby and when i wake-up i see water everywhere. If the water was hot i was burn my self. I cannot go out alone. Im felling dizie and im lost. The last year i applied for PIP they gave me score 4. This year I diside to apply again. The men in actos tells me should be gave me the last time. After 2 months cames today the letter dont gave me and gave me score 2. More less then another one. Its very difficult for me. How i can work? I cannot be a cleaner... Some kind of product gave more headich i change the products in my house. All the time i toke migraine. And i cannot. But what im do? Its very strong. Today im felling very sad. More stress just i want cry because im single mum and i have small children. Anyone have the same problem? Thanks a lot.

Submitted by Maria on

Hello Maria

This sounds like a difficult situation to find yourself in. I can hear that this is worrying you at the moment.

Living with epilepsy can be tough, as it can bring many challenges which people who do not have epilepsy may never experience. If you have not already, it would be a good idea for you to talk to your epilepsy doctor about what is happening. This would give you chance to check whether the treatment you are getting is still the best for you.

It is possible that in time your situation may change and you feel able to go back to work. I have included a link to our work information to help you to know your rights in the workplace in the future.

At the moment though, if you do not agree with the Personal Independence Payments (PIP) decision you could ask for it to be reviewed. This is called a mandatory reconsideration. Our website has links to resources and organisations who may be able to support you with this. These include a letter template to ask for a mandatory reconsideration, as well as a guide which can support you to appeal.

I can hear that all of this is having an effect on how you are feeling, and that you feel there is stress in your life at the moment. Maybe you could talk to your GP about this to see if there is any way they can support you at this time. Your GP may also be able to support you with the migraines you have been experiencing.

When you have epilepsy, looking after yourself and children can be tough. It must have been scary for you to realise that you had burned yourself with the hot water. We have information about safety and looking after children when you have epilepsy on our website. This includes tips for staying safe in different situations. NHS Choices also has more information about how your local Social Care team may also be able to support you.

Some people tell us that connecting with other people who understand epilepsy has made a positive difference to them. Our online community, forum4e is a great place to do this. We also have coffee and chat groups in some areas of the UK so maybe you could look to see if there is one near you.

I hope that this information helps you to find some ways to support yourself and your family. If you would like to talk about any of this, or if we can be of any more help, please feel free to get in touch.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen-Epilepsy ... on

Hi my name is Marcus, i've had epilepsy since I was 16, now 38. Have always worked through a lot of different jobs but lose money when going through a bad spell, I was told it was caused by a benign brain tumour and I would always have it, are there any benefits I can claim for?

Submitted by M Youngs on

Hi Marcus

You may be eligible for some benefits, depending on your individual circumstances and how your epilepsy affects you. Our benefits page has a list of possible benefits. If you click on each benefit name it will take you to more information about it so you can see if you might be eligible. You can also use an online benefits calculator like Turn2Us to work out what benefits you might be able to get.

Regards

Grace

Epilepsy Action Helpline Team

Submitted by Grace-Epilepsy ... on

Just to say Access To Work also covers cost of travel to your place of work in that you are eligible for FREE taxis. Meaning also you are not restricted on your place of work as long as there is no one direct bus route.

Submitted by Craig on