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Benefits information for people with epilepsy in England

This information is about entitlements and benefits that may be available for people with epilepsy who live in England.

If you have epilepsy and live in Northern Ireland, Scotland or Wales, Epilepsy Action has different information available for you.

If you live outside the UK, you can find out about entitlements in your country by contacting your local epilepsy group.

Contents

Free prescriptions

If you have epilepsy and take epilepsy medicines, you are entitled to free prescriptions. This is for all your prescription medicines, not just your epilepsy medicines.

How to get free prescriptions

To claim free prescriptions, ask your GP or hospital doctor for application form FP92A. You need to fill in parts 1 and 2. Your hospital doctor, GP or a member of staff at your GP surgery, will sign to confirm that the information you have given is correct. They will then send for an exemption certificate for you.

Reclaiming prescription costs

Until you have your exemption certificate, you will have to pay for your prescriptions. You will be able to claim the money back, once you have your exemption certificate. To do this, ask the pharmacist for a receipt form FP57 when you pay for the prescription. There is information on FP57 that tells you how to claim the money back.

For more information about prescription charges contact NHS Choices
Tel: 0845 850 1166
Website: www.nhs.uk 

The Disabled Persons Railcard

If you have epilepsy, you are eligible for a Disabled Person’s Railcard if you either:

  • still have seizures even though you take epilepsy medicine; or
  • you are not allowed to drive because of your epilepsy. 

You will need to pay for a Disabled Person’s Railcard, but it will save you money if you regularly travel by train.

Adults get a discount of up to a third on a range of rail tickets. One adult travelling with you will get the same discount as you.

Children aged from five to 15 years will pay the normal child’s train fare. However, if a child has a Disabled Person’s Railcard, one adult who is travelling with them can claim a discount of one third off their own adult’s fare.

You can get an application form for a Disabled Person’s Railcard from any of the following places.

Free bus travel

London bus

If you have epilepsy, you are eligible for a free bus pass if you would be refused a driving licence if you applied for one. You are not eligible to hold a free bus pass just because you have epilepsy.

Epilepsy Action has more information about epilepsy and driving.

A free bus pass can be used for free travel in England between 9.30am and 11.00pm Monday to Friday and all day at weekends and Bank Holidays. In some areas, you may also be able to travel free at other times. You may also get reduced local rail fares.

For more information about how to get your free bus pass, contact your local council or your local passenger transport authority. You can find details of these in your local Phone Book, or by contacting Epilepsy Action, freephone 0808 800 5050.

Alternatively, a list of local councils in England is on the Directgov website: www.direct.gov.uk

If you live within one of the following areas, contact your local passenger transport authority:

Bus passes in London - the Freedom pass

If you are eligible for a free bus pass and you live in Greater London, you can apply for a FreedomPass.This gives you free travel on the entire Transport for London network. On most services, you can use the pass at any time. On other services, you may only use it at certain times.

Contact FreedomPass for more information about using the pass and how to apply:
Tel: 0845 275 7054
Website: www.freedompass.org 

Access to work

Some people who can’t drive because they have epilepsy, may be entitled to help with the additional costs of travel to and from work, and also travelling while at work. This comes under the Access to Work scheme.

You apply by ringing the number for England which is 020 8426 3110.

The interview is conducted over the phone and will take about 15 – 20 minutes. It is possible to ask for a call back.

More information on the Access to Work scheme: www.gov.uk/access-to-work/overview

Welfare benefits

If you have difficult to control epilepsy or other disabilities, you may be entitled to receive certain welfare benefits. These include: 

Disability Living Allowance

Disability Living Allowance (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.

DLA is tax-free and isn’t affected by any other income or savings that you have. It is paid on top of any other earnings or income.

Epilepsy Action has more information about claiming DLA. 

Personal Independence Payments

From 2013 a new Personal Independence Payment (PIP) will replace Disability Living Allowance for disabled people aged 16 to 64.

Your entitlement to PIP isn’t based on your disability, but the help you may need because of your condition or disability. Your personal circumstances are taken into account and the impact that your condition or disability has on your ability to live independently.

The payment is tax-free and isn’t affected by any other income or savings that you have. It is paid on top of any other earnings or income, so you can claim it whether you are in or out of work.

Changes from Disability Living Allowance to Personal Independence Payments

Aged under 16
There is no change for Disability Living Allowance for children up to 16 years of age - this will continue.

Aged 16 to 64
In the future, the Personal Independence Payment (PIP) will replace Disability Living Allowance (DLA) for everyone aged 16 to 64.

If you already claim DLA, you don't need to do anything now. The Department for Work and Pensions will contact you between 2013 and 2016, to let you know when your DLA will stop. They will tell you when and how you should make a claim for PIP.

Aged 65 or over
If you are aged 65 and receive Disability Living Allowance, this will continue, as long as you still meet the entitlement conditions. You will not need to claim a Personal Independence Payment (PIP).

More information about PIP is available from the Directgov website: www.direct.gov.uk 

Also Epilepsy Action has more information about Personal Independence Payments.

Attendance Allowance

Attendance Allowance (AA) is awarded to adults aged 65 or over who need help with personal care, or supervision or watching over to keep them safe. It is paid at different rates depending on how the person’s disability affects them.

AA is tax-free and isn’t usually affected by any other income or savings that you have. It is paid on top of any other earnings or income.

If you get AA, you will not be affected by the introduction of Personal Independence Payment.

More information about Attendance Allowance is available from the Directgov website: www.direct.gov.uk 

Organisations that offer benefits advice 

Benefit Enquiry Line
A confidential telephone advice and information service, providing general advice on benefits. They can also help you fill out claim forms for benefits.
Helps with:

  • finding out if you can make a claim
  • making a claim.

Freephone: 0800 882 200
Textphone: 0800 24 33 55

Cerebra
Cerebra have a free guide which takes you through each stage of applying for Disability Living Allowance for children.
Helps with:

  • making a claim for a child.

Tel: 0800 328 1159
Website: www.cerebra.org.uk

Citizens Advice Bureau (CAB)
CAB gives free, confidential, impartial and independent advice about your rights, including benefits. They can also help you fill out claim forms for benefits.
 Helps with:

  • finding out if you can make a claim
  • making a claim
  • appealing against a decision about your benefits.

Tel: 08444 111 444 (for advice by telephone)
Tel: 0207 833 2181 (for details of your local branch)
Website: www.adviceguide.org.uk/england

Community Legal Advice
A free and confidential advice service paid for by legal aid. They offer advice about appealing against deceision made about your benefits. They can also give you details of solicitors in England.
Helps with:

  • appealing against a decision about your benefits.

Tel: 0845 345 4345
Tel: 0845 609 6677 (for people who have problems speaking or hearing)

DIAL UK
Disability Information and Advice Line services, run by and for disabled people. They may be able to refer you to someone who can help you fill out claim forms for benefits (provided there is someone in your area).
Helps with:

  • making a claim.

Freephone: 0808 800 3333 (to find your local group)
Website: www.scope.org.uk/dial

Directgov
This website has lots of information about all the different benefits that are available.
Helps with:

  • finding out if you can make a claim.

Website: www.direct.gov.uk (go to the Money, tax and benefits section)

Disability Rights UK
This website has a number of free factsheets you can download.  It offers basic information about benefits, tax credits, social care and other disability related issues for claimants and advisers.
Helps with:

  • finding out if you can make a claim.

Website: www.disabilityrightsuk.org (go to the Ways we can help section)

Turn2us
A confidential service which helps you to find out about benefits and grants you may be entitled to.
Helps with:

  • finding out if you can make a claim.

Freephone: 0808 802 2000
Website: www.turn2us.org.uk 

If you would like to see this information with references, visit the Advice and Information references section of our website. See Benefits in England.

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

Code: 
F066.03

Epilepsy Action would like to thank Wendy Collins, Benefits Trainer, for her contribution to this information.

Wendy Collins has no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.

  • Updated October 2012
    To be reviewed October 2014

Comments: read the 38 comments or add yours

Comments

hi,
My boyfriend has an epilepsy for over 5 years now, we both have full time jobs, but we only able to work in the afternoons as he normally have his fits in the morning, i had to change my shifts to afternoons because he needs care when he is fitting, usually after his fit, he looks disorientated and do some weird/dangerous staff like- getting in to bath and turn the hot water on, trying to walk out the windows! also he need someone to cook or feed him as he sometimes is not able to hold his spoon or cook, he once tried to cook a meal but then drop a hot pan and burn his feet that when i had to change my hrs and also had to step down from a supervisor to a lower pay. sometimes we both are late to work or he is not attending at all, we cant progress in the company at all as we both not able the morning hrs... im scared that if we keep coming late to work due my boyfriends fit they can dismiss us
:( we planing to buy a house to have something good in our life but its so hard to get the deposit together, my boyfriend needs a daily care in the mornings, and he needs me to prepare him daily meals. i start work at 13.30 and he start at 16.00 he is not able to drive anymore and he has a free bus pass but sometimes its too dangerous for him to get a bus as he have small fits,so he have to order a taxi which he has to pay £12 one way. Please advise me is the any allowances we could claim like DLA ?

Thank you.

Submitted by dorota t on

Hi. It certainly sounds like you are finding things difficult at the moment.

Some people with epilepsy are entitled to receive Disability Living Allowance. You can find more information about this on our website. If you would like to receive a guide to completing the Disability Living Allowance form, please contact the Epilepsy Helpline, freephone 0808 800 5050, email helpline@epilepsy.org.uk. To find out if there are any other benefits you may be entitled to, you could contact the Benefits Enquiry Line, freephone 0800 882 200.

I can appreciate that you and your boyfriend are worried about losing your jobs. You may find it helpful to know that, in England, Scotland and Wales, people with epilepsy and people who care for them are covered by the Equality Act. This makes it illegal for people to treat them unfairly because of their epilepsy. The Equality Act means that employers have a duty to make reasonable adjustments to help people with epilepsy stay in work. You can find more information here: Epilepsy and the Equality Act.

Finally, as your boyfriend’s seizures are having such an effect on his daily life, has he spoken to his epilepsy specialist about his treatment? The specialist may suggest making changes to his epilepsy medicines, or even see if there are any other treatments, such as vagus nerve stimulation, which may help him get better seizure control.

I hope this helps.

Amanda
Advice and Information Team

Submitted by Amanda@Epilepsy... on

I don't know whether I will be able to claim any benefits. I have epilepsy as a result of a right occipital lobe tumour which was removed as far as possible in September. I am currently on ssp from my full time job. I have about 4 to 6 weeks left of this. Currently my epilepsy is not controlled by meds, I am am experiencing dizziness and extreme tiredness. When my GP finally approves me to go back to work, work have stated they will probably send me for a medical which at present i would not pass. When my ssp runs out will I be able to claim any benefits. Any assistance would be appreciated.
Thankyou

Submitted by Paula on

Hi Paula

Thank you for your comment. This must be a difficult time for you, but I hope our information will help.

First of all, when your employers send you for a medical, they will have to take your epilepsy into consideration. Then they will have to consider making reasonable adjustments to allow you to go back to work. Reasonable adjustments could mean you doing slightly different work, or they could mean you do a phased return. This means working fewer hours than usual. To have a phased return, you will have to have a Fit Note from your family doctor. Your employers could only refuse to have you back in any capacity if there was no reasonable adjustments they could make to accommodate you.

There is some information on the about claiming Employment Support Allowance when you run out of SSP. You could also contact the following organisations for advice about any other benefits you might be entitled to claim.

Benefits Enquiry Line

This is a confidential telephone advice and information service, providing general advice on benefits. They can also help you fill out claim forms for benefits.

Helps with:

  • finding out if you can make a claim
  • making a claim

Freephone: 0800 882 200
Textphone: 0800 24 33 55

Citizens Advice Bureau (CAB)

CAB gives free, confidential, impartial and independent advice about your rights, including benefits. They can also help you fill out claim forms for benefits.

Helps with:

  • finding out if you can make a claim
  • making a claim
  • appealing against a decision about your benefits.

Tel: 08444 111 444 (for advice by telephone)
Tel: 0207 833 2181 (for details of your local branch)
Website: www.adviceguide.org.uk/england

If you would like to speak with an epilepsy adviser about anything related to your epilepsy, please feel free to contact the Epilepsy Helpline, freephone 0808 800 5050.

Kathy
Advice and Information Team

Submitted by AndyWeb on

I am waiting to find out if I am epileptic or not. I went to the gym recently and was told under no circumstances could I use it as their insurance won't cover me if anything happens. I think I'm being discriminated against. What do you think? If I was in a wheelchair no way would they say that to me.

Submitted by Renni on

Hi Renni

If you are in the process of getting a diagnosis of epilepsy, it is likely that you will have had some seizures. So, there may be some pieces of equipment that are not safe for you to use.

As far as we are aware a gym should carry out a risk assessment with their users. In this assessment they should ask questions about your seizures and any other health condition you may have. This way they should be able to see which gym equipment should be safe for you to use. If they have done this assessment, and you only use the equipment that’s safe, we understand their insurers should cover you.

If you do have a diagnosis of epilepsy you would be covered by the equality laws. In this section, if you go to Finding out more about the equality laws, this will take you to details of where you can get further advice.

I do hope this helps. However, if you’d like to discuss this further, you can talk to one of our trained advisers on our Epilepsy Helpline (freephone) 0808 800 5050.

Rosanna
Advice and Information Team

Submitted by Rosanna@Epileps... on

What a great site this is - so good that you can give all these people support. I have recently been diagnosed with epilepsy, but the tablets seem to be doing the job and all is fine. Today in the neurology clinic I saw a notice about your campaign to get bus passes to start before 9.30, which would be extremely welcome, I couldn't believe it the first time I used mine for work and they said they started then! But I can't find where to sign up for the campaign - is it still going or was it an old notice?

Submitted by Sara Merritt on

Hi there

Last week my partner started to suffer from small seizures where he feels sick and faint. He hasn't had a full seizure and they only last less than a minute. He has been to the doctors who have arranged for him to see a neurologist to confirm if he has epilepsy or not.
The problem that we have is that my partner is self employed and if he is diagnosed with epilepsy I am sure the DVLA will take his license off him which means he will lose his business as he is on 24/7 call out. We can't live off my wages so I was wondering if there was anything for people who are self employed as everything I have read so far seems to be for people who have been employed. Any information anyone could give me would be much appreciated.

Thanks a lot

Submitted by Murphy on

Hi Murphy

The law says that if a person has a single seizure they must stop driving for a minimum of 6 months and inform the driving agency. If your partners seizures are confirmed to be epilepsy then he will need to be seizure free for one year before he can reapply for his licence.

If this means you partner is unable to continue his employment he could talk to the Disability Employment Advisor at his local job centre, they can help to find a job or gain new skills and tell him about disability friendly employers in his area.

Some people who can’t drive because they have epilepsy, may be entitled to help with the additional costs of travel to and from work, and also travelling while at work. This comes under the Access to Work scheme.

Turn 2 us are an organisation helps people access the money available to them – through welfare benefits, grants and other help.

Here is some information about organisations that provide benefit advice

Vicky
Advice and information officer

Submitted by Vicky@Epilepsy ... on

Hi Vicky

Thank you very much for the information, I will have a look at the links you have sent me.

Best regards

Submitted by Murphy on

Hi my daughter has petite mal epilepsy and is on medication but it makes her so tired. She works part time and would struggle to work full time but she can't manage on the money and worries constantly. Is there a benefit she could claim?

Submitted by Chris on

Hello Chris

Any benefits that your daughter might qualify for would depend very much on her individual circumstances. Therefore, she may find it helpful to contact one of the organisations listed above, who will be able to help her with this question.

Amanda
Advice and Information Team

Submitted by Amanda@Epilepsy... on

I developed epilepsy a few years ago whilst working in the construction industry, I am obviously now not able to do so anymore or drive either. I have around 2/3 grand mal seizures a month and I am now stuck in minimal wage work but do receive DLA soon to change to PIP.
I am trying to find information on any help available for me to re-train in another field as I do not want to rely on benefits to support my wife and family but living on minimum wage no matter how many hours I work is just not working.
Any help greatly received.

Submitted by Dan Ward on

Hi Dan

If you have not already done so, you could ask to speak to the Disability Employment Adviser at your local Jobcentre Plus, for help and advice. They may be able to offer you some suggestions and maybe refer you to the Shaw Trust. This is a charity which exists to provide support to people who need help to be independent, economically active and to contribute to society. You can find a lot more information on their website.

I hope this helps.

Amanda
Epilepsy Action Advice and Information Team

 

Submitted by Amanda@Epilepsy... on

Hi - have very recently been diagnosed with epilepsy (last week!) and still think I'm in shock. I am a single parent to two young girls (10 and 4) and really don't know where to turn or what to do. Have been told to surrender my driving licence (which of course I will do). Signed off sick from work at the moment but would really appreciate some advice help please. Thank you.

Submitted by Colette on

Hi Colette

It can come as a big shock to be diagnosed with epilepsy and coming to terms can take time.  

How people come to terms is very individual, therefore we have various ways to help.

We have plenty of information available on our website.  I hope you will find it helpful and informative. May I suggest the following information to help your children understand your epilepsy?  My mum has epilepsy and our children website section. Although the information on the children’s web section is aimed at children with epilepsy, it can help children in general understand epilepsy.

If you think it will be helpful to talk or contact people who understand what you are experiencing. We have Local groups, and our forum4e online community. We are also on facebook and twitter.

We also have a membership scheme, which keeps people up to date with information via our magazine Epilepsy Today.

Finally, if you ever need to, you could always contact us again. As Advice and Information Officers, we can discuss your concerns confidentially. We can discuss your diagnosis, medication and many other issues related to your epilepsy.

If we can be of any more help, please feel free to contact us again, either by email helpline@epilepsy.org.uk or the Epilepsy Helpline freephone 0808 800 5050.

Diane Wallace

Advice and Information Team

Submitted by Diane on

Hi I wonder if you could help me with this, my brother is now in his mid thirty's & lives alone, he has always had epilepsy and has always worked full time however we have recently heard that he has had a few seizures at work & now he has been made redundant. This has happened a few times with various employers & we feel that the seizures could be impacting his ability to not only obtain employment but to stay in employment. Could you advise as to what help is available for him, he did apply for DLA a few years ago but was refused because they did not feel his seizures happen often enough for it to be a major concern, the problem here is that we simply don't know how many he's having on a daily basis & nor does he, he has no knowledge of the seizure once it has passed. Any advice would be gratefully received.

Submitted by Dee on

Hi Dee

I’m sorry to learn that your brother has been made redundant, and you feel that his seizures are making it difficult for him to stay in employment.

You may find it helpful to know that in England, people with epilepsy are covered by the Equality Act. This is a law which makes it unlawful for people with epilepsy to be treated unfairly, for reasons related to their epilepsy. So, a person cannot be made redundant, just because he has epilepsy.

Employers are not allowed to discriminate against people with epilepsy when they are recruiting employees, or whilst they are employing them. All employers have a duty to make reasonable adjustments to help people with epilepsy. Your brother’s employers should always carry out a risk assessment to look for areas in the work place where his seizures cause health and safety risks. They should then look for ways that they can made reasonable adjustments to help him.

You can find more information about the equality laws and employment on our website:

UK equality laws

Epilepsy and employment

If your brother would like some help in looking for another job, he could ask for an appointment with the Disability Advisor at his local Jobcentre Plus.

To find out if he is entitled to receive any benefits, he could contact the Benefits Enquiry Line, tel. 0800 882 200.

I hope this helps.

Amanda

Advice and Information Team

Submitted by amanda on

Hi my friend has a 3year old son who has epilepsy which mainly consists of drop seizures. He is starting nursery soon amd his parents have been asked to provide protective covering for table legs and corners of table etc. Is this right or should this be provided for him. Thanks.

Submitted by zoe on

Hi Zoe.

Because the boy has epilepsy he is covered under the Equality Act. This means the nursery have to do a risk assessment for him and then make any reasonable adjustments. This is the school’s responsibility, not the parent’s. If the parents are having problems sorting this with the school, they might want to contact the local Parent Partnership group. They could maybe help them to get it sorted.

Cherry

Advice and Information Team

The Equality Act: http://www.epilepsy.org.uk/info/equality

Talking to school: http://www.epilepsy.org.uk/info/education/parents

Education and epilepsy: http://www.epilepsy.org.uk/info/education

Parent partnership network: http://www.parentpartnership.org.uk/

Submitted by Cherry on

Need some advice I'm a single parent to 3 children my middle child was diagnosed with epilepsy when he was 5, now nearly 18, he had brain surgrey in 2010 to his left temporal lobe, thought it had been succesful but just under a ye*r later he had a siezure, for a year after he had on averge 6/8 a month the on the 27 oct 2012 he had his last siezure until the 16 sep this year almost a year again I so wanted to get him driving lessons for his 18th, well that's no longer going to happen at the moment I'm driving him everywhere but as I can not seem to get a job I'm struggling to pay for my car to stay on the road I really can not get on the bus since my mum was crushed to death by 2 buses in 1994, well the question is will my son be able to get high rate mobility when he turns 18, at the moment he gets middle rate dla, and low rate mobility and until he's siezure free he won't be able to drive

Submitted by l4ur4 on

Hi

You, and your family, have certainly had more than your fair share of problems. So, I’ll do my best to try and help you, or point you in the right direction to try and get some help.

As your son has had epilepsy surgery, am I right in saying that he must have had quite severe epilepsy? This is usually the case when someone has epilepsy surgery. Also for him to receive Disability Living Allowance his seizures must have been severe or regular. It must be a relief for him not to have seizures as often as he used to. However, having even one a year would, as you mentioned, stop him from being able to get his driving licence.

Due to his change in seizure activity, I’m sorry to say that you might find he will lose his Disability Living Allowance, rather than get a higher rate. There may be other benefits that are non epilepsy related that you, and your family, might be missing out on. So, you could contact some of the organisations mentioned on this webpage, who give specific benefit advice.

I appreciate how you feel about getting on a bus after your mum’s dreadful incident. Does your son feel the same about buses? If not he would be entitled to a bus pass, living in England. This way it will relieve you from having to drive him around.

I do hope you find this of some help.

Rosanna

Advice and Information Team

Submitted by Rosanna on

My husband was diagnosed with epilepsy around 12 years ago. He was seizure free with medication until 2 years ago, when they started up again. They started shortly after the death of his younger sister, when he started to suffer from headaches. It was only when he was involved in a car accident several months later that we realised what was happening. He stopped driving, but in September last year he suffered a seizure at work and I was asked to collect him. His medication was increased, and he was put on reduced duties. All seemed well, until he had a further 2 seizures at work in Feb and Apr this year. He has been on medical suspension since April. He has attended 2 welfare meetings at work, neither of them were particularly positive - the second was attended also by an advisor. Despite this and discussions on adjustments, he has been invited to a third and final welfare meeting. It is quite clear from the wording of the letter that his employer feels that the working environment is not safe enough for my husband to return to work - he is a printer. His situation has not been helped by him having a seizure in the middle of a risk assessment, witnessed by the assessor and HR manager!

We have been thorough with our attempts, and even taken legal advice for when the inevitable happens, which trust me will happen. They have said would rather meet us in an employment tribunal than a manslaughter tribunal, and have stated 'dismissal on grounds of capability' if no further adjustments are possible. Ironically, the area he was moved to for safety (reasonable adjustment), has turned out to be a more dangerous area for him to work in according to the risk assessment!

Sorry this is so long. My concern is that from what I have read, he won't be eligible for benefit. Is this correct? He wouldn't be deemed sick enough for any kind of disability payment (whatever it is these days) and is capable of doing virtually anything, but because his seizures continue (and he's not aware of them), I'm beginning to worry that something might happen to him at home, or even walking to the shops.

We genuinely feel that the stress of being on medical suspension has not helped him get over the breakthroughs, since his sister's death. He doesn't dwell on it, nor is he depressed (except in the days around the anniversary), but if he is dismissed on capability grounds, what exactly will mean to him, and what would he qualify for?

Submitted by Jo on

Dear Jo

It sounds like you and your husband have had a lot to deal with recently. And that you have looked as closely as you can about how your husband could be supported at work. But sometimes the bottom line is that it is just not safe for a person with uncontrolled seizures to work in a particular environment.

In terms of benefits, I think it depends on how the benefits agency see the reasons why your husband is no longer in work. But I would definitely suggest you take advice from an organisation such as your local welfare rights unit or Citizens Advice Bureau. They could clarify what will happen for him at first. In the longer term, he would probably need to apply for Employment and Support Allowance. Disability Rights UK have a very comprehensive fact sheet on this benefit.

I can see adjusting to being out of work will have very mixed benefits. It will hopefully mean his life has less stress in it. And that he has some time to sit with his sense of loss. But he may also find it useful to connect with other people with epilepsy. So a coffee and chat group, or our online community, forum4e, might be worth his looking at.

I do hope things work out for the best for you both. 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. 

Cherry Lander

Advice and Information Team

Submitted by Cherry on

hi fellow people in distress
this is my story in short I'm 36 yrs old for years know I have controlled my seizures through sleep in dark rooms lots of rest and taking recreation drugs(seek pro help) although I''ve quit smoking in general months ago and the last time I took AED was 13 years ago back then the medicine was stronger than the seizure itself relied on last minute seizure friendly tactics like lying down . the seizures for me started at the age of 12 and were constant throughout my secondary school leaving with just 2 gcse .

Submitted by muneer hussain on

My son has had epilepsy from the age of 17 he gets very depressed as the fits are in the morning he feels sick and faint he has had so many jobs as he cant get to work on time at the min he is working 6am-2pm ihe lives on his own so i have to get up at 4-30 am and talk him through getting dressed he has to walk to work which takes 45 min in the dark he used to cycle but he came of after he had a skip as he calls them he is now 26 and struggling with life can anyone please give us some advice on making the mornings easy for him or advice about his work and what the law says he is entitled to its all starting to take its toll on me as i am only getting 4-5 hours sleep

Submitted by Julie on

Hi Julie

That sounds like life is pretty hard for both you and your son. If, as I understand, he still has seizures in the morning, there are a few things he could do to try to improve that situation.

  • I am assuming he is taking epilepsy medicine. It may be worth him talking to his doctor or pharmacist about what time he takes this. Maybe if he took it at a slightly different time, he would be less likely to get seizures.
  • It may be that his dose is not enough for him now. If this is possible then he would need to talk to his family doctor or neurologist about this.
  • You don’t say what job he does, but it may be possible to ask your employer to consider a reasonable adjustment. I am thinking if he was able to start later in the day, this might be easier for him.

If your son is still having seizures, he would be entitled to a free bus pass. If public transport wouldn’t get him to work, then he may want to investigate Access to Work.

I am not quite clear what his problem is in getting dressed, but if it is related to his memory, then he may want to look at our information on this.

Does he get any benefits? If he is continuing to have seizures, then it may be worth his while applying for a Personal Independence Payment. As this is not means-tested, he could get this at the same time as working.

I do hope some of these suggestions take you and your son forward a bit. But 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. 

Cherry Lander

Advice and Information Team

Submitted by Cherry on

I'm wondering if you could help. I was diagnosed with epilepsy in 2000 when I was 13 my fits weren't often and I was well protected as I was living in a small town and everyone knew what to do when I was 20 they started to get more serious and occurred more often. I moved to a city 3 years ago and my seizures were well controlled, just recently I have started having them daily I am a chef and as a result cannot go to work due to it not being safe. I have been signed off by my doctor but cannot pay my rent due to ssp. Is it safe for me to continue work or should I find something else. Where can I go for help?

Submitted by lisammm on

Hi Lisa

It sounds like you have had a few changes through the years to do with your seizure control.

If you aren’t already doing so, it would be a good idea to talk to your consultant about this. Then they could see if there is a pattern and whether they can suggest anything else to help get them back under control. You may want to keep a seizure diary, in order to show the doctor what is happening with your seizures.

Here is all our information about work and epilepsy. As you have epilepsy you are covered by the Equality Act. This means that your employer should have done a risk assessment for you. Since you started having seizures again, they will hopefully have done a new one for you. My general understanding of the environment in which a chef works, would suggest that it would not be safe for you to work there while your seizures are uncontrolled. Your employers should therefore look at whether it is possible to make any reasonable adjustments to your job. This may depend on whether they have work they could offer you outside the kitchen environment.

If you love your job and you are optimistic about regaining seizure control, and your employer can make reasonable adjustments for you, you may well want to stay in your job. If you are unsure about any of these things, then you might want to start thinking about something else. But certainly don’t leave before you have taken employment advice. This is because how you left could well influence whether you could get benefits or not.

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. And there will be other people in forum4e who have been in a similar position to you.

If you don’t think your employers are treating you fairly then you could contact one of the support organisations we have listed.

Here is some information about benefits when you are signed off work. For more information you could contact your local welfare rights unit. Or visit your local Citizens Advice Bureau. Or you could ring Turn2Us. This is an organisation which gives advice on benefits and grants. Their helpline number is 0808 802 2000.

I do hope this gives you most of the information you need to help you with your next steps.

Cherry

Advice and Information Team

Submitted by Cherry on

Hello, I am applying for my driving licence after 1 year clear of fits. If for some reason I am not allowed to drive, I will be applying for a bus pass, can my wife also get a free bus pass? I ask this because 1 other person can travel with me using Disabled Persons Railcard, and wondered if same applied for bus pass? Thanks steve

Submitted by Steve on

Hi Steve

Some local council do offer a companion pass for people who are unable to travel conveniently on their own due to a disability. To see if the companion pass is available in your area, please contact your local council.  

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

I cannot hold a driving licence due to not being seizure free but I have been turned down flat for a bus pass. Is there anything I can do?

Submitted by Kat on

Hi Kat

If you have had seizures in the last 12 months you would be refused a driving licence. This means you should get a bus pass. I am linking you to the information on the government website. This is a pdf. You can find the relevant information on page 6 section 1:7 . Here is what it says:

An eligible person is someone who would, if he or she applied for the grant of a licence to drive a motor vehicle under Part III of the Road Traffic Act 1988, have his/her application refused pursuant to section 92 of the Act (physical fitness) otherwise than on the ground of persistent misuse of drugs or alcohol.

Or you could just put concessionary bus pass and your town in the search engine and it should bring us the details of eligibility. You could print that off as that should be the most convincing information for them.

I do hope that sorts it for you.

Cherry

Advice and Information Team

Submitted by Cherry on

I am fifteen and recently had two seizures in the past two months after being seizure free for two years on medication. I am confused as to if there is anything I am possibly entitled to so any help would be massively apprieciated as I am genuinely curious if anything would possibly fit my case?

Submitted by Holly on

Hi Holly

As you have had seizures in the last 12 months, you are entitled to a free Disabled Person’s bus pass. This can be used for free travel in England between 9.30am and 11.00pm Monday to Friday and all day at weekends and Bank Holidays. In some areas, you may also be able to travel free at other times. You may also get reduced local rail fares.

For more information about how to get your free bus pass, contact your local council or your local passenger transport authority. You can find details of these in your local Phone Book, or by contacting Epilepsy Action, freephone 0808 800 5050. Alternatively, a list of local councils in England is on the Directgov website: www.direct.gov.uk

Kind regards

Amanda
Advice and Information Team

Submitted by amanda on

I have been sent home from worn twice in the past 3 months due to seizures which I suffer in clusters. My boss has told me if this happens again or I am sick for any other reason I will be given a formal warning. Can my epilepsy go against my sickness? He knew I was epileptic when I took the job! I don't know how it can be legal for a medical condition to go against your sickness!!!!!

Submitted by Jane on

Can epilepsy count against your sickness?

Submitted by Jane on

Hi Jane

The Equality Advisory Support Service (EASS) suggests companies record sick leave due to a disability separately and look at it separately from general sick leave. If they don’t, it could be seen as indirect discrimination and/or discrimination arising from a disability. Here is a link to the fact sheet on Flexible working and time off for employers produced by the Equality and Human Rights commission – this is found within the Equality Act starter kit.

It’s advisable for you to look at your terms and condition of employment, which will explain the company’s policy for sick leave. Ideally, your employer should be meeting with you to see if there is anything they can do the help. For example, could altering your hours or some of your duties help? If you don’t need to go home after every seizure, is there somewhere for you rest until you are ready to return to work? If you haven’t already, you may wish to view our information on work. There is information on Risk assessments and Staying in work that I hope you will find helpful.

If your employer has tried to be more flexible to accommodate your epilepsy related absence and there is still a problem you may wish to discuss this further with us or the EASS.

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

Diane Wallace

Advice and Information Team

Submitted by Diane on

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