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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 20 comments or add yours

Comments

Hi I'm concerned for my son,who is epilepsy,and today he was finished from his job,they say U.S. work place isn't safe,but we know it is,they had his epilepsy nurse attend his work area,without our son attending as he did request he wanted to be there,but they never did,and lied to his nurse that they tried getting hold of him,but they never did,they also lied to the nurse when they showed him areas that our don doesn't work in,the nurse sent his report to the fact that the work and equipment our son doesn't have any involvement with to do with his job.can you please help,can they do this

Submitted by Beverley gell on

Hi Beverley

It sounds like your son’s employers have not treated him fairly. Due to his epilepsy, if he is employed in the UK, he is covered by the Equality Laws.

It would be helpful if you could get a copy of your son’s terms and conditions of employment and a copy of the companies’ complaint procedure. It would also be advisable to seek help and advice from an employment rights organisation. Here are some organisations that should be able to offer you and your son help and advice.

ACAS (Advisory, Conciliation and Arbitration Service) (England, Scotland and Wales)
ACAS aims to improve organisations and working life through better employment relations. They offer free advice about employment rights.
Tel: 0845 747 4747
Website: acas.org.uk

Law Centres (England, Scotland and Wales)
Law Centres provide free legal advice and representation to disadvantaged people.
Tel: See your local Phone Book
Website: lawcentres.org.uk 

Disability Law Services
Disability Law Services offer advice and information about employment law to disabled people.
Tel: 020 7791 9800
Website: dls.org.uk 

If we can help with any epilepsy information, please feel free to contact us our helpline team, either by email helpline@epilepsy.org.uk  or the Epilepsy Helpline freephone 0808 800 5050. 

I hope things work out well for your son.

Regards

Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by 37204 on

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