The information in this section is about possible entitlements for people with epilepsy in the England.
If you have epilepsy and live in Northern Ireland, Scotland or Wales, you can find information about possible entitlements for you on different pages of this website
If you live outside the UK, you can find out about entitlements in your country by contacting your local epilepsy group.
In this section
- Introduction
- Free prescriptions
- The Disabled Persons Railcard
- Free bus fares
- Access to work
- Welfare benefits
- Further information
Introduction
These web pages aim to provide an overview of entitlements that may be available for people with epilepsy who live in England.
Free prescriptions
If you have epilepsy and take daily anti-epileptic drugs (AEDs), you are entitled to free prescriptions. This is for all your prescription drugs, not just your AEDs.
How to get free prescriptions
Ask for application form FP92A from your doctor's surgery. You need to fill in parts 1 and 2. Your doctor, or a member of the practice staff, will sign to confirm the information you’ve given is correct. They will then send for an exemption certificate for you.
Reclaiming prescription costs
If you don’t have your exemption certificate yet, you will have to pay for your prescriptions. You will be able to claim the money back, once your exemption certificate arrives. To do this, you will need to get receipt form FP57 from the pharmacist when you pay for the prescription. There is information on FP57 that tells you how to claim the refund.
For more information about prescription charges contact NHS Choices Tel: 0845 850 1166, www.nhs.uk
The Disabled Persons Railcard
If you have epilepsy and take anti-epileptic drugs you can apply for a Disabled Persons Railcard if you either:
- Still have seizures even though you take epilepsy medication;or
- You don't qulalify for a driving licence because of your epilepsy
You will need to pay for this, but it will save you money if you regularly travel by train.
The railcard gives an adult a discount of up to a third on a range of rail tickets. The same discount also applies to one adult who is with the railcard holder.
Children aged from five to 15 can qualify for a Disabled Persons Railcard. The child named on the railcard will pay the normal child’s fare. An adult travelling with them can then claim a discount of one third off their own fare.
You can get an application form for a Disabled Persons Railcard from some railway stations, online at www.disabledpersons-railcard.co.uk, by phoning Rail Travel made Easy on 0845 605 0525, or by calling the Epilepsy Helpline.
Free bus fares
The Concessionary Bus Travel Act 2007 gives free travel in England for people who are eligible for a free bus pass.
The Act does not set age limits for people who are entitled to a free pass. This means that all disabled adults, children and young people of fare paying age may qualify for a free pass.
You will be able to use your free bus pass anywhere in England after 9.30 am and all day at weekends and bank holidays. In some local authorities, you will also be able to travel free locally at other times of the day. Some local authorities also include discounted or free travel on local trains in their free bus pass.
Eligibility for a free bus pass
If you have epilepsy, you would be eligible for a free bus pass if:
- you would be refused a driving licence if you applied for one, or
- you have been awarded the higher rate mobility component of Disability Living Allowance for at least one year, or
- you have been issued with a disabled person’s parking badge (Blue Badge Scheme).
Showing proof of being eligible for a free bus pass
- If you are not now eligible for a driving licence, you could show the DVLA letter that tells you not to drive.
- If you have not had a driving licence, your local authority can seek independent medical evidence. You should not have to pay anything for this.
- If you get the higher rate mobility component of Disability Living Allowance, you will need a letter from the Department of Work and Pensions. It should show that you get this benefit.
- If you have a Blue Badge, you could show the latest V11 vehicle licensing reminder from DVLA. This will show the ’disabled’ taxation class.
More information about free bus passes
More information about the Concessionary Bus Travel Act 2007 Act is available from the Department for Transport Enquiry Helpdesk on 0300 330 3000.
For more information about free bus passes in your area, please contact your local passenger transport executive or local authority (details in your local Phone Book).
Access to work
Access to work can help you if your epilepsy affects the way you do your job. It might pay towards a support worker or any special equipment you need at work. It can also pay towards the cost of getting to work if you can’t use public transport
You can get further information from the Directgov website
Welfare benefits
If you have difficult to control epilepsy and/or other disabilities, you may be entitled to Disability Living Allowance. If you are over the age of 65 you may be entitled to Attendance Allowance.
Disability Living Allowance
Disability Living Allowance (DLA) is awarded to children and to adults aged 64 or under, who have care needs and/or mobility needs. Here are some reasons why you may qualify for DLA if you have epilepsy.
Care needs
- You need someone to keep an eye on you during the day or night, to make sure that you are safe.
- You need to have help from someone through the night to help you during, or after, a seizure.
- You are unable to safely cook yourself a meal.
Mobility needs
- You need someone with you when you are in an unfamiliar place, to guide or help you.
You could need help with care or mobility because of your medical condition and/or any treatment you are having.
DLA is paid at different rates depending on how your epilepsy affects you. To qualify, you must have needed help for at least three months. You should need this help for at least another six months.
DLA is tax-free and isn’t affected by any other income or savings you have.
Epilepsy Action has a guide to claiming Disability Living Allowance. If you would like to receive a copy, please ring the Epilepsy Helpline .
Attendance Allowance
Attendance Allowance (AA) is similar to the care component of Disability Living Allowance. It is awarded to adults aged 65 and over, who have care needs. It’s paid at different rates depending on how your epilepsy affects you.
You could need help with care because of your medical condition and/or any treatment you are having.
AA is tax-free and isn’t affected by any other income or savings you have.
Further information about benefits
The following organisations can provide more information about your eligibility to receive welfare benefits, filling in forms, and possibly help with appeals.
- Benefits Agency,
Tel. 0800 44 11 44 - Cerebra (Foundation for the Brain Injured Child)
Information about claiming DLA for children
Tel. 0126 724 4200 www.cerebra.org.uk - Citizens Advice Bureau
For details of your local branch, tel. 020 7833 2181
www.adviceguide.org.uk - Dial UK (Disability Information and Advice Line Services)
Tel. 01302 310 123 www.dialuk.org.uk - Disability Alliance
Tel. 020 7247 8776 www.disabilityalliance.org
This information has been produced under the terms of The Information Standard.
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Updated March 2011To be reviewed March 2013
Comments: read the 22 comments or add yours
Comments
I'm 42 and ive had epilepsy since i was aged 7, i cannot work due to my condition or even go out by my self incase i have a fit and no ones there with me. I cannot have a driving licence either, i have about a fit per month or maybe even fewer now due to a change of tablets, i have never claimed any benfits due to my epilepsy and is wondering if i would be liable for them?
Hi Angie
You will be entitled to free prescriptions and a bus pass. For other benefits, such as the disability living allowance, you will need to be assessed on an individual basis. To find out more you can contact our Epilepsy Helpline freephone 0808 800 5050, or one of the above organisations (Dial UK, Citizens Advice Bureau, Disability Alliance, Benefits Agency) who can provide more information about what benefits you could receive and how to apply.
Diane
Email Helpline Team
hi nothing against peps with epilepsy as my son as it what i want to no is tha why i have to pay for my medications
im 48 and just ad a heart attack had to have opperation and now on 7 tablets a day ,i ave to take most of these for rest of my life otherwise i coule suffer another attack and die whats the difference can som 1 tell me as my illness is just as bad as peps with epilepsy
Hi my names dan, im 21 years old and have just been diagnosed with Temporal Lobe Epilepsy, quasi psychosis and depersonalisation and derealisation syndrome.Ive been told i have to stop riding my motorcycle, but I was wondering if I have to stop my current work? Im a mechanical maintenance engineering apprentice which involves using workshop machinery and working in a mechanical environment. As its an apprenticeship and was in my second year when diagnosed, I dont see how I can be offered alternative roles in the workplace as the point of me working was to learn the trade. Im a bit confused as to the laws and a bit overwhelmed with all the info at the moment. any help would be great. Thank you.
Dan
Hi Dan
Thank you for your comments. This sounds like a tough time for you.
In terms of your recent diagnosis, I can only comment about the
temporal lobe epilepsy. MIND may be to help you with the other conditions.
In terms of epilepsy and your work, if a driving licence is essential for your work, then it’s likely you wouldn’t be able to continue with your apprenticeship. If it isn’t, even though you are in a workshop, using machinery, you may still be able to continue with this. It would very much depend on the outcome of your employer’s risk assessment. This risk assessment would need to consider what happens to you during a seizure, and what type of machinery you would normally use.
If the risk assessment suggests you, or anyone working with you, would be at risk if you had a seizure at work, your employers may need to make reasonable adjustment. There is information about risk assessments and reasonable adjustment on the employment section of our website.
This can only be very general information. If you would like to speak with someone about any of your concerns, one of our advisers will be happy to help you. You can either phone the helpline, freephone 0808 800 5050, or email any questions to helpline@epilepsy.org.uk.
Kathy
Advice and Information Team.
Arh!!!!! im so annoyed im am 22 yrs old pregnant was fit free for 3 yrs not on medication only ever experieced 2 previous fits i have had another fit wen i was 26wks pregnant so they have put me back on medication they havent explained anything to me i dont no wat type of epilepsy i have i dont know wat i am entiltiied to all those yrs i had to pay out for prescription when i didnt need to. i have also read in my pregnancy book that low blood pressure can cause a fit during pregnancy well all midwifes and doctors have said mine is normal but saw a consultant yesterday and he said it was low and has been for a while! could this be the reasons why i have had fits??? all three fits have been when i am asleep well blood pressure drops while you are asleep. why has nobody explained what type of epilepsy i have and wat is the cause. also i am having one too many side affects from medication what shall i do before i read the sideaffects i kept getting problems going to my doctor i even had a bleed last week but why didnt they relise wat medication i was on wish i read the symptons before everything i have been experiencing is a side affect what should i do help people???? x thanks
Hi, Lizzie. You could be right about the low blood pressure. I started having fits when I was around 7 years. I was diagnosed at the age of 14years after having a seizier in the middle of an ecg. This showed that I had grand mal epilepsy. I was put on epilim 500mg. I never really had continuous seiziers. I would go for a year with none and then have 3 in the space of a few days. When I was 25 and after my 1st child I stopped having seiziers.I came of medication and was fine for a long time. I never had another untiI I was 31years. When this happened I was sent to a new consultant, as I had moved to a different area. The new doctor sent me for a tilt test and other various tests. From these tets I was told that I was diagnosed wrong and I did not have epilepsy. I was told that I had vasovagal syncope. The reason I was having seizures was because my BLOOD PRESSURE suddenly dropped very low which caused me to loose conciousness. I have now found out that my blood pressure is always on the low side and can just drop for no reason or when I am stressed or when i am ill. I have now been put on medication to stablise my blood pressure. I am now 39 and have only had 2 episodes of loosing conciousness, both times when I was ill, since I have been on my new medication. The meds I am on have a lot less side effects that epilim. Maybe you should ask your doctor about a tilt test to see if you too have been diagnosed wrong. If you have low blood pressure then you could have been.
I suffer from epilepsy and cannot work. I am homeless which is making my condition worse. how can i get help to rent a flat as the council will not help me.
Hi Oliver
I'm sorry to hear about your circumstances just now. Have you considered speaking with Social Services, to see if they can help you? As a person with a long-term condition you are covered by the
Chronically Sick and Disabled Person's Act, which means that the physical disability team at your local Social Services offices may be able to help you. You could also contact Crisis.They can help with housing and employment.
Shelter may also be able to offer you some support.
If your epilepsy is not very well controlled, you might like to speak with an epilepsy adviser, to see what epilepsy services are available in your area. You can contact the
Epilepsy Helpline, freephone 0808 800 5050. Alternatively, you can email them at helpline@epilepsy.org.uk.
Hope this helps.
Kathy
Epilepsy Helpline Team
Hello, my name is Julie. In 1999 I had a 'fit' at night in my bed and was found by my daughter who was only 11. who called an ambulance. I was diagnosed with epilepsy and in Oxford with a brain tumour. I had no indication other than bad headaches that I put down to working nights as a staff nurse. Luckily the tumour was benign and my recovery was only a couple of years and I was back to work/driving,(after a special driving test and the usual seizure/fit free 12 months) At that point I should have been satisfied that my epilepsy was well controlled and my life was as good as could be. Stupidly I wanted to come off the medication because I did'nt like the side effects/tiredness, so I blamed everything on that basis and a friend had come off meds and was fine!. Obviously I started having fits and turned my life upside down. It has taken seven years to sort out my medication, and I finally stopped nursing as it was a struggle. It occurred to me that all this time I had been in denial and not considered epilepsy as a disability. Now with help from Doctors and my specialist Nurse my fits are under control and havent had a black out for years. My only problem is 'complex partial seizures' that are very brief odd thoughts that only take a few seconds and occur when I am very tired or late taking my tablets, stressed or ill. I am totally aware etc, but this is very annoying and still classed as a seizure!.Again my medication is being gradually increased and I am confident that this will be resolved. Instead of taking negative approaches about my life this years new resolution was to make changes. General health renewed after a year off, I applied for three jobs. Two application forms asked very detailed health questions and I told all to each. One has offered an interview, working in a chemist part-time. The other one was refused because it involved' riding a bicycle in all weathers', which is not what I thought the vacancy in the post office required but understandable with traffic etc to consider as not able to drive. The third one is working in Nursing Home, this application form only asked if I had a 'serious disability'.? To me my epilepsy was not serious to me as I had been working as a RN in the NHS in full knowledge So I omitted this info, however after much thought I am going to discuss this before begining the post I was offered. So I will be back to let you all know the outcome.Epilepsy varies from person to person and is therefore individual to each person. What work for some may not for another................etc. Just don't give up, look at what you can do, there are lots of benefits and support out there so just ask. The other day I found out that some people are entitled to suitable housing and even special safety dogs!, so see what's out there for you, take care and good luck!!
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?
Hi
Although you haven’t got the results of your tests yet, you still need to tell DVLA about your seizures. You don’t have to wait until you have a clear diagnosis of epilepsy. DVLA will ask your doctors for information about the events you have had. So, it’s worth telling DVLA now, as your licence will already be invalid. This could also mean that your car is not insured.
When your doctor made the decision to start you on anti-epileptic drugs (AEDs), they will have done that because they believe you have epilepsy. They will have based that diagnosis on what you, and anyone who saw the events, can tell them. They will have also looked into your medical history to see if you have had any illnesses or accidents that could make you a high risk of developing epilepsy.
When you get your test results, they will not say whether you have epilepsy or not. They will just show any abnormalities in your brain that might cause you to have epilepsy. In many people, there are no abnormalities, but they just have a tendency to have seizures.
Once you have contacted DVLA, they will decide how long it will be before you can have a driving licence again. This is normally 12 months. They will write to you with their decision. At that point, you will be able to apply for a concessionary bus pass. As you are already taking AEDs, you will also be able to apply for a Disabled Person’s Railcard and free prescriptions.
Hope this helps.
Kathy
Advice and Information Team
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!
Hi Lisa
Here are some links to organisations that offer accommodation to people with epilepsy.
Residential
Halfway house/sheltered accommodation:
For local housing schemes, you can contact your local Housing Office. They will have details of both council and private services.
You might also find it helpful to log on to our on-line community, Forum4e. Some of the members may have suggestions of other places that offer accommodation for people with epilepsy.
I hope this information helps.
Advice and Information Team
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
Hi
This is a difficult one, as you can actually claim DLA and work, so long as you have daily care or mobility needs. I think you need some expert advice, possibly from Citizens Advice or Turn2us. Citizens Advice can help you with an appeal against the DLA decision, if they think you qualify. Citizen’s Advice and Turn2us can also tell you about unemployment benefits and look at whether there any benefits you can claim on income, rather than epilepsy grounds.
Kathy
Advice and Information Team
Hiya i meant employment and support allowance, i do also get dla also 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
What a lot a pressure you and your husband must be under. It must be so difficult for you both.
For advice and help with your situation, you may wish to contact welfare rights organisations. Such organisations can check you are getting the correct level of the DLA mobility and see if there is other possible mobility support. For example the Citizens Advise Bureau (CAB) or DIAL UK can offer advice on welfare benefits and other services, such as: community care, help with living independently and mobility and transport issues.
If you are going to review your DLA, you may wish to receive our publication a Guide to completing the Disability Living Allowance (adults) form for people with epilepsy. You can order this from our shop, or by ringing the Epilepsy Helpline freephone 0808 800 5050.
As well as looking into your benefits, you could see if there is any support for your husband as he is your main carer. The charity Carers UK, know all about the pressure couples face, when one of them becomes a carer. They can help look into the care and support that may be available for you both.
Finally, if you’d would like to speak to one of our adviser about this and how you are feeling, please contact them on the Epilepsy Helpline freephone 0808 800 5050. Or you can email them at helpline@epilepsy.org.uk.
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