Entitlements for people with epilepsy in England
Printer-friendly version
PDF Version
Last updated 11 Mar 2010, review date due 15 Sep 2010
Introduction
The information in this section is about entitlements that may be available for people with epilepsy in England. If you live outside the UK, you can find out about entitlements in your country by contacting your local epilepsy group.
Contents
- Free prescriptions
- The Disabled Person’s Railcard
- Discounted bus fares
- Transport to work
- Financial support
- Disability Living Allowance (DLA)
- Attendance Allowance (AA)
- Further information
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 apply for an exemption certificate
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 the completed form to NHS Business Services Authority.
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.
- Further information about prescription charges is available from the Prescription Helpline, tel. 0845 850 1166.
The Disabled Person’s Railcard
If you have epilepsy and take anti-epileptic drugs (AEDs) you can apply for a Disabled Person’s Railcard. 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 years old can qualify for a Disabled Person’s 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 Person’s Railcard from some railway stations, online at www.disabledpersons-railcard.co.uk, by telephoning Rail Travel made Easy on 0845 605 0525, or by calling the Epilepsy Helpline.
Discounted bus fares
The Concessionary Bus Travel Act 2007 gives free travel in England, for people who are eligible for a concessionary bus pass. The Act does not set age limits for people who are eligible for a concessionary pass. This means that all disabled adults, children and young people of fare-paying age are eligible for a concessionary pass.
If you have epilepsy you are classed as disabled if you would be refused a driving licence if you applied for one.
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.
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 telephone directory).
Transport to work
If you aren’t able use public transport, you may be entitled to help with the cost of getting to work by other means. This help comes under the Access to Work scheme. You can get further information from Jobcentre Plus.
Financial support
If you have difficult to control epilepsy and/or other disabilities, you may be entitled to receive Disability Living Allowance (DLA). If you are over the age of 65 you may be entitled to Attendance Allowance (AA, rather than DLA.
Disability Living Allowance (DLA)
DLA is awarded to children and adults aged 64 or under, who have care needs and/or mobility needs. DLA is paid at different rates depending on how your disability affects you. To qualify, you must have needed help for at least three months because of a severe physical or mental illness or disability. You should need this help for at least another six months.
You could need help with care or mobility because of your medical condition and/or any treatment you are having.
DLA is tax-free and isn’t affected by any other income or savings that you have. It’s paid on top of any other earnings or income.
Attendance Allowance (AA)
This benefit is similar to DLA but is awarded to adults aged 65 and over, who have care needs. It’s paid at different rates depending on how your disability affects you.
Further information
Epilepsy Action has a guide to claiming DLA. You can get a copy by calling the Epilepsy Helpline, freephone 0808 800 5050, and asking for F060.
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
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
Twitter Updates
Epilepsy Action blog
Comments
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.
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 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 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
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 Shane,
I'm 18 and have had epilepsy for 10 years. Compared to other people my condition isn't as bad as theirs, i have fits occasionally, sometimes a year or 2 apart. But it's still an inconvience e.g. driving watching how much i drink, going places on my own etc.
You do deserve to claim for things. Most of the things i am not able to apply for because i dont reallly have any special needs or requirements, and apart from having epilepsy i dont have any other problems. The requirements for the things vary, so i would say if your type of epilepsy means are entitled to it, then you deserve to claim.
Think of it as a sort of compensation for putting up with it for so long!
You deserve it just as much as everyone else!
Helen
I had musicogenic (music would trigger of my temporal lobe fits) epeilepsy from 17 to 30 years of age It was mureder going outside with car radios and shopping precincts turns out I had a condition called musicogenic epilepsy. Chance meeting with a neuro at local hospital lead to my going to Kings college and being operated on for scar tissue in the Temporal lobe area. glad to say apart from a few seizures at night not triggered by music Everything is fine. thank heavens for 21st century technology. Am now playing all my old heavy rock cd's
hi ive had epilepsy now since i was 5 im now 24 and have a moral dilema i know i can get some stuff (e.g.free bus pass) but for me i don't know if i deserve it i wonder if any one else feels like this my family tell me to claim everything i can but for me i think other people deserve it more than me, i would just like the opnion of other epileptics or maybe people who live with it aswell
hi my names dan im 25 i have been haveing seizures for a while from 1-2 a day to 4-5 a day but have started to slow down 1-3 every 2 or 3 days
i have had a MRI but was normal now i am seeing my neurologist this friday to see what the cause is i am waiting for appoitments to have eeg done and see a clinial psycologist aswell
i have also applied for dla as was advise by my parents to i have had my appeal turned down twice due to lack of medical evidence but i cant have evidence till the test are done is there any way off appealin as i was told i can appeal to tribunal i am currently on esa but only on temporay as that descision was also turned down i feel like im on a loseing battle i cant claim any bennifits and i cant claim jsa i tried to claim jsa but they say said due to haveing black outs and seizures i was not eligable i have a few medical problems witch are
photo phobia (sensitivity to light) diagnosed
post traumatic headache syndrome diagnosed
post traumatic stress disorder diagnosed
tremmors in my hands investigateing
chronic constapation diagnosed
seizures been invetigated
and suffer from blackouts been investigated
i am really at a loss with all this benifit stuff and just dont have the energy to carry it on is there any companys out there that can help me with this matter any help would be very greatfull
many thanks dan
Hi Jacqueline,
I was diagnosed with epilepsy even though all my tests came back negative including my EEG. The doctors made a decision based on what other people saw. I was really devastated. It hasn’t been easy but you do adapt. As for driving unfortunately your son will have to be fit free for 12months. But the way to look at things: could you or your son live knowing that you have caused an accident and someone’s death all because of “wanting to drive”? That’s what the question that was given to me.
But on the plus side, if it’s diagnosed, the treatment can now begin. It took 9 years for me to get diagnosed, and 4 years later my medication is starting to control it all. Your son might be lucky and respond to medication sooner without having to play with doses – that’s the lengthy bit. But he will get there, stressing over it will make it worse. It did me. I was a mess, I lost my driving, I wasn’t allowed to deep sea dive and caving/potholing/climbing all had to be stopped and my career to join the Army soon came to a stop, that was my whole life. But there are other things out there; it’s a case of making the most of what you can do......otherwise if you or your son thinks the opposite then it will be harder. I’ve now got a degree in science, I work full time, and I’m expecting my first child, it’s not the life that I had, but it’s one that I’m living and enjoying, and one that I can have!
As for his apprenticeship, look for something that can be done. Look at the adaption’s that can be made in order for your son and everyone around him to be safe. It is by law that he cannot be discriminated against, and if reasonable adaption need to be made in order for your son to work there, then they have to be made! Where I work, we had to swap office to a bigger one, since the office that we had was too small. There was no room for me to fall to the ground and have a seizure without hitting something on the way. Now my desk is next to a “void” area where I can lay without hurting myself if need be. I was embarrassed at first, but the guys bought in a “doggy” basket to make me comfortable and since the banter is all about respect and understanding.
My husband has epilepsy and takes Epilim (Sodium Valproate). Is he entitled to apply for a Disabled Persons Railcard as that particular drug is not listed as one that is accepted.
Dear Angela,
May I suggest that you approach the National Autistic Society, NAS, for help and support. Your son will probably always need your support and if he has a diagnosis of Aspergers Syndrome the probation officer's comments are out of order! This shows a total lack of understanding. As for the epilepsy, I am under the belief that the epilepsy will not change your son's personality but some medications do. With Asperger's syndrome it is not unusual to experience personality changes in times of stress. You may find with help from the NAS (and also Epilepsy Action) your son is entitled to benefits such as Disability Living allowance and maybe Employment and Support Allowance if the ability to have a job is impaired. I'm not an expert, just a mum with a daughter aged 17 who has Autism and Epilepsy.
Think positive - I know it's hard sometimes.
i am really asking for advice my son as had fits for 2 years he as cysts on the brain and as been diagnose with left temporal lobe epilepsy he is 24 ,we have also been told by mental health team that he as aspergers syndrome.since the fits started we have noticed a distinct decline in his mental health and have had to beg for help woth this his neurologist said his epilepsy doesnt cause mental health issues but it only started after the fits sometimes he as 4 or more fits together. finally we have been reffered to an expert.mty son was a gentle person before the fits started now he as bursts of temper in the home.the police and us have tried repeatedly to getv the help he needs and to get him this help we reached the point where we got him his own room outside the family home and now he is getting some help. but trying to get dss to give him a crisis loan as been a nightmare. they actually left him with no money for food etc and treated him like he was a lowlife and people who who have public positions have said like his probation officer why cant you do these things yourself. do you have to go everywher with your mom or dad are you always going to be like that. he felt like nobody, if he still didnt have our support he said he would have rather died than have people treat him like he as being treated as it is he believes that what ever happens to him doesnt matter because he is nobody. he as been beaten up and robbed four times.i feel gutted for him and i feel let down for him and us by the system and people who treat him that way.
Hi Jacqueline
It can be difficult to accept a diagnosis of epilepsy when all the tests are clear. It might help you and your son to understand why this can happen if you read our website information about how epilepsy is diagnosed and different tests for epilepsy.
One of the tests for people who have suspected epileptic seizures, in the UK, is an electroencephalogram test (EEG). The EEG would have looked at your son's brainwave patterns to see if there was any epileptic activity happening, at the time he was having this test. If he didn't have a seizure during the test it would result in a normal reading.
An MRI is given to show if there is an underlying cause for the epilepsy. However, for six out of ten people with epilepsy, there is no known cause that can be found. So, because it's not uncommon for the tests to be normal, epilepsy is mainly diagnosed by taking account of what's happening. This is where the specialist would have asked your son questions about, for example, how he felt, any family history and an eye witness of what they saw during his seizure, and so on.
It can seem unfair, just when your son is starting out his adult life and then he gets a diagnosis of epilepsy. If he's questioning his diagnosis, he could ask his GP if it's possible to have another opinion.
Your son will need to stop driving because of his diagnosis. It might help him to know that he can drive again once he fulfils the driving law , or the specialist decides his symptoms are not epilepsy.
In the UK, people with epilepsy, or a history of epilepsy, are covered by the Disability Discrimination Act 1995 (DDA). So, many people with epilepsy work, and nearly all jobs are open to people with the condition.
Your son should be assessed on an individual basis by an employer, or potential employer, for his suitability to do the job he might apply for. This would include things such as whether he has the qualifications, skills and experience to do the job, as well as the type and frequency of his seizures and how this may have an effect on the job he wants to do. We do have some information on epilepsy and employment on our website. I hope this helps.
Regards
Rosanna
Epilepsy Action
I've had epliepsy all my life and my seizures are now getting worse. I am on convulsant drug medication to help but due to my last fit i noticed my teeth are getting worse due to the fact of my teeth grinding which has now caused me more dental health problems from having constant fits. Is there any help I can get from the NHS with dental costs and any forms I can get to see if I am entitled to partly free dental care. I am currently 32 years old.
Hi my 17 year old son has been diagnosed with epilepsy this morning. He has had a total of 6 fainting fits in 2 years. He has been in hospital for the past week for tests, which have all been clear, including MRI scan, so it seems unfair to me that he has been labelled as an epileptic with no real proof. He's just bought a car, and is going to be looking for an apprenticeship soon. How does this diagnosis affect his ability to get a job and drive a car. I am finding this so hard to accept, and I know he will too.
hi, my 11 year old son has suffered from photosensitive epilepsy & has absences, since he was 6 years old, he also has dyslexia & dyspraxia, he goes to a special school he is statement, his last seizure was on 29/11/09 on the night time then on 30/11/09 on the morning he had another seizure, the doctor at the hospital he is under has changed his medication, i have tryed to get my son (i think its called a blue badge) to put our car for when we take him out due to him having seizure while we have been out in the past, we find it difficuilt to get him to the car after seizure, well they have refused us, i dont know where to go next, my daughter collects & takes my son to school incase he has a seizure, the school is on our est so he cant get the free transport, any advise please. thank you.
Hi Richard,
If you take daily anti-epileptic drugs (AEDs), and live in England, you qualify for all your prescriptions free. You have to firstly apply for an exemption certificate FP92A and you can get the form from your GP.
If you need a prescription for your AEDs before you get your exemption certificate, you will need to pay for the prescription. However, you can claim the money back if you ask the pharmacist for a receipt on form FP57, at the time you pay for your drugs. Then once you get your exemption certificate, take this to the pharmacist along with your receipt. They will then give you a refund.
I hope this helps.
Rosanna
Epilepsy Action
I have been recently diagnosed with Epilepsy, I have been told by Southampton General hospital Pharmacy that I have to pay for my Epilepsy prescriptions, I paid for the 1st one last week.
Please can the free prescription statement be clarified. Is there something i need to do to get this changed.
After reading your website I am now not sure where i stand.
Please advise.
Many Thanks