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of everyone affected by epilepsy

Disability Living Allowance and Attendance Allowance for people with epilepsy

These pages are about Disability Living Allowance in the UK. If you are looking for information about benefits in another country, please contact your local epilepsy organisation.

In this section

•    New claims for Disability Living Allowance
•    Existing claims for Disability Living Allowance
•    Attendance Allowance
•    Organisations that offer benefits advice

June 2015 update about people changing from Disability Living Allowance to Personal Independence Payments

Disability Living Allowance (DLA) is gradually being replaced by Personal Independence Payments (PIP) for people aged 16 to 64.

You may have been told you won’t be contacted about changing from DLA to PIP until later in the year. The government has now brought this timetable forward.

You may receive a letter from The Department for Work and Pensions (DWP) about changing your claim from DLA to PIP in the next few months. The links below give you more information about this.

New claims for Disability Living Allowance (DLA)

Children under 16
Children under 16 can still make a new claim for DLA. You may be able to get DLA for your child if they have difficulties walking or they need more looking after than a child of the same age who doesn’t have a disability. To request a claim pack please call the DLA helpline or download a pack from the website.
Tel: 0345 712 3456
Website: gov.uk/disability-living-allowance-children

Cerebra is a charity for children with neurological problems. They have a free guide which takes you through each stage of applying for DLA for children under 16, with brain-related conditions.

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

People between 16 and 64
People between 16 and 64 can no longer make a new claim for DLA. You will need to claim Personal Independence Payment (PIP) instead.

Epilepsy Action has more information on Personal Independence Payments

People over 64
You can make a new claim for Attendance Allowance.

Existing claims for Disability Living Allowance

People between 16 and 64
DLA is gradually being replaced by PIP. To find out when claims in your area will be affected, go to the online PIP checker.
Website: gov.uk/pip-checker

If you need to make any changes to your claim, or if your DLA is due to end, you will be invited to claim PIP instead.

Information on Disability Living Allowance in Northern Ireland
Website: nidirect.gov.uk

Attendance Allowance

You may be able to claim Attendance Allowance if:
•    You are 65 or over and
•    You have a physical or mental disability and
•    Your disability is severe enough for you to need help caring for yourself or someone to supervise you. This could be for your own or someone else’s safety

For more information on Attendance Allowance in England, Scotland and Wales see the government website.
Website: gov.uk/attendance-allowance

Information on Attendance Allowance in Northern Ireland
Website: nidirect.gov.uk

Organisations that offer benefits advice

Citizens Advice
Citizens Advice gives free, confidential, impartial and independent advice about your rights, including benefits. They can also help you fill out claim forms for benefits.
Tel: 08444 111 444 (for advice by telephone)
Website: adviceguide.org.uk

For information and advice on benefits and grants
Tel: 0808 802 2000
Website: turn2us.org.uk

Contact a Family
Offers benefits advice for people with a disabled child
 Tel: 0808 808 3555
Website: cafamily.org.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).
Freephone: 0808 800 3333 (to find your local group)
Website: scope.org.uk

This website has lots of information about all the different benefits that are available.
Website: gov.uk/browse/benefits

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.
Website: disabilityrightsuk.org

Cerebra have a free guide which takes you through each stage of applying for Disability Living Allowance for children.
Tel: 0800 328 1159
Website: cerebra.org.uk

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action freephone Helpline on 0808 800 5050.

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

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

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

  • Updated June 2014
    To be reviewed November 2015

Comments: read the 17 comments or add yours


Hi Cathie

With the Personal Independent Payment the money will be paid to you for you to use as you need. You can use this money in anyway to help with your quality of live. It doesn’t matter if it’s your daughter that takes you shopping or helps with your daily care. 

The following information is taken form the Disability Rights UK PIP factsheet.

‘PIP is for you, not for a carer. You can qualify for PIP whether or not you have someone helping you. What matters is the effect your disability or health condition has on you and the help you need, not whether you actually get that help. You can spend your PIP on anything you like. PIP acts as a ‘passport’ for other types of help, such as the Motability Scheme (see Other ways PIP can help you).’ Here’s a link to this factsheet. If you haven’t already completed your application for PIP, you may wish to get help with completing the form one of the helpful organisations listed on our PIP webpage.

Many people experience a jumping movement in their sleep but I’ve not heard of many people who actually bite their tongue in their sleep. If you haven’t already, you could mention your night time symptoms to your epilepsy consultant. They may arrange for further tests such as a sleep EEG. Or they may suggest you wait and see if your epilepsy medicine helps with the night time tongue biting.


Diane Wallace

Advice and Information Team

Submitted by Diane on

Hi, I am 20 years old and I was diagnosed with juvenile myclonic epilepsy when I was 16. I am also very photosensitive, very moody and have bad anxiety attatcks. ETC... I was wondering if I were be able to apply for DLA ?

Submitted by tryce kelley on

Hi Tryce

It really depends on whether your epilepsy means you have care or mobility needs. If you do, and decide to apply it would be worth thinking about exactly what your needs are, and how often you have them. Cerebra have information about claiming DLA for children that gives tips about this that might help you.

Sometimes epilepsy medicine can affect your mood, so it’s worth discussing your feelings with your epilepsy specialist, or epilepsy nurse, if you have one. You could also speak to an adviser on Epilepsy Helpline freephone 0808 800 5050, to see if they can help you. 


Advice and Information Team

Submitted by Kathy on

I have had epilepsy for 21 years and it has never been controlled I have always worked with it and not had to much of a problem until the last 2 years it has slowly got worse and has turned into a different sort of epilepsy the neurologist believes it is psychotic and I am becoming very violent in my seizures they have got so bad that my current job does not want me to work for them any longer because they are worried for my safety and others,but I can not see I am going to be able to get another job and I am not entitled to any benefits so what should I be looking to do because I need to pay my bills and worrying will just make me worse.

Submitted by Aimee Poulton on

Hi Aimee

It must be a very difficult and worrying time for you. As you say, worry could only make things worse, so if you haven’t already, you need to speak to a benefits advisor. Organisations such as turn2us or CAB can look at your finances as a whole, not just epilepsy related benefits. Hopefully they will be able to tell you what help is available.

It must be difficult been told you have psychotic seizures. Most doctors prefer to talk about non-epileptic attacks. It can be difficult to tell the difference between an epileptic seizure and a non-epileptic attack. This is true even for a specialist. It’s important that your diagnosis of NEAD is done by a doctor with a special interest in NEAD or epilepsy. And you receive the appreciate treatment.

Some people may have behavioural problems due to their epilepsy activity or epilepsy medicine. Although our information is covering childhood behaviour it can also be relevant to adults. In rare situations aggression or behavioural problems can be connected to epilepsy. This kind of behaviour, would be intermittent and non intentional. Aggression can, occasionally, be part of a seizure. Here, the person is unlikely to be able to perform a deliberately aggressive act. In their confused state, however, they may be aggressive in response to what they interpret as aggression from someone else. They are not knowingly being aggressive. Some people with epilepsy can have mood disturbances before, between or after seizures.

If behaviour is affected during a seizure or happens due to epilepsy medicine, your neurologist may need to look at your treatment.

I hope this is of help. 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.

Yours sincerely

Epilepsy Action's advice and information team

Submitted by Diane@Epilepsy ... on

Hi I have seizures in my sleep and last for max or 7-8 minutes and they are very rare do I qualify?

Submitted by nicola rattew on

Hi Nicola

As your seizures are infrequent, it’s unlikely you will be entitled to the personal Independence Payment (PIP) or carer’s allowance.

These benefits are for people whose epilepsy and any other health issues impact on their life on a day-to-day basis.

If you were having frequent seizures, or any other medical condition, you may get the daily living component of PIP if you need help with things like:

  • preparing or eating food
  • washing and bathing
  • dressing and undressing
  • communicating
  • managing your medicines or treatments
  • making decisions about money.


Epilepsy Action Advice and Information Team

Submitted by Diane@Epilepsy ... on

I live with my partner and have been for a year now the problem I have is we need to move to a bigger bungalow and we have found one available an bided for it now we are in big talks with the council as im epileptic they say I need a shower now iv lived in this bungalow for 12 months with a bath and a mixer shower but they wont let us have this other bungalow because it has a bath and a mixer shower now iv had baths all my life and my partner sits with me as he is my carer 24 hrs a day and we need this bungalow I have been having a bath for the last 12 months so whats there problem as its only the same as it is here any help would be well good thankyou

Submitted by diane brown on

Dear Diane

That sounds like a difficult problem. If someone has uncontrolled epilepsy we would always recommend having a shower rather than a bath.

I wonder if you have been in touch with an occupational therapist from the council. I can see that you feel completely safe with your current arrangement. I’m not sure I can suggest anything else to persuade the council that it would be okay for you to continue in this way.

I wonder if you have an epilepsy nurse who could help you with this?

I do hope you are able to get the bungalow you want.

Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Hi my son is six amd got diagnosed with nocturnal possiable optical lobe eplipsy 18 months ago over the the past 3 months he has has two sezieues in the day about 6 weeks apart but was really pootly for about a week each time..didnt eat or drink ..would I qualify

Submitted by donna chandler on

Hi Donna,

The guidelines for DLA state you may be entitled if your child needs more looking after than a child of the same age who isn’t disabled. As your son has only had two daytime seizures within six weeks it’s unlikely he would qualify. However if you want to try applying you can download a claim form from gov.uk/disability-living-allowance-children or call 0345 712 3456 to request one.

If you do decide to apply the charity Cerebra has a free guide which takes you through how to apply for DLA for children with brain-related conditions, such as epilepsy. You can call them on 0800 328 1159 or visit their website at cerebra.org.uk. The website’s down for maintenance right now but it should be up again soon.

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.

Epilepsy Action Advice and Information Team

Submitted by Grace@Epilepsy ... on

Hi, I was diagnosed with temporal lobe epilepsy and I have tonic clonic seizures, I work but only part time as my condition has worsened over the last couple of years. I've been on several drugs but non have controlled it as of yet. My seizures happen daily and on occasion the odd grand mal here and there. I've found my short term memory has also suffered over the last couple of years too, I forget medication, leave the house unlocked and stop mid conversation as I forget what I'm talking about...
Last year I blacked out and fell breaking my hand in the process first and only time I've injured myself during a seizure but now I'm not allowed to be left alone (wife's rules) can't go to town alone, shower with door open, cooking is a thing of the past and never work unsupervised.... Feels a bit like my independence has gone to be honest.

Is there any help I can receive???

Thanks in advance

Submitted by steven on

Hi Steven
That sounds like you’re having a pretty tough time. You’ve obviously been struggling with seizure control. I wonder if you’ve had a chance to look at our Seize Control campaign. You might be interested in attending one of the sessions that are being held around the country this year. The Near Me tab also give you information about whether there is a coffee and chat group or any other event near you. Sometimes it can be really helpful to talk to other people in a similar situation. In the same vein, we have an online community called forum4e. It is for people with epilepsy and carers of people with epilepsy.

Memory is a really common problem for people with epilepsy. But it’s especially common for people with temporal lobe epilepsy. I don’t know if you’ve seen our information and strategies for dealing with a poor memory. There may be something there that might help you.

I can see you’ve been on our DLA page. It might be worth starting on the general entitlements page for where you live. It is always worth checking about free prescriptions, and a free bus pass and the Disabled Persons Railcard.

In most parts of the country Disabled Living Allowance  has now been replaced by Personal Independence Payments (PIP). It is possible you might be able to get this. Use the PIP check, linked from our PIP pages to get a rough idea of whether you might be eligible. If you could be, then my suggestion would be that you print off the application form and our information and then make an appointment at your local Citizens Advice Bureau to get some help with the form.

It sounds awful that you broke your hand, though I’m glad to hear that it was a first seizure related injury. Youi might want to look at our information on safety. There are some tips there about how to stay safe but also keep some of your independence.

I really hope this information gives you a few things to move forward with. 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.

Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Hi. I have a 4yr old girl who is now being diagnosed with epilepsy..she has been suffering with seizures for a long time and also has febrile convulsions..I was wondering whether she would qualify for dla as her seizures are very frequent and I have to watch everything she does..thanks for the help..Reanna

Submitted by Reanna on

Hi Reanna
I hope it is feeling ‘easier’ finally to have a diagnosis for your daughter.

To get DLA for a child she needs to require more care than another child of her age. So it may be worth your while to apply. For a guide to completing the form contact Cerebra. You can either download it or they will send you a copy.

You may also find our information on children with epilepsy useful.

And NHS Choices has some good information on febrile convulsions.

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.

Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Hi, I'm 49 diagnosed with epilepsy - focal but in the last 3 years changed to idiopathic generalised. They used to be approx 3 years apart up until 3 years ago, they became everyday. At that point I was given medium care rate and low rate mobility. Last year I overdosed. My meds have been tweaked and I have had the VNS fitted. I still have to take my meds, but my seizures are every 3-4 weeks. I am hard of hearing also. I live with my 15 year old son but in an area where I have no family or friends. My meds, and I've had many changes, make me lack concentration, short term memory loss and now generally feel low. My epitologist told me emotionally it would take up to 2 years to heal from the trauma of everything. What will happen with regard to PIP? I am concerned with the side affects I feel, they trouble me in a lot of ways. If they turn me down for PIP, I don't think I could cope with having to do fulltime work to get MAD. To look at me, they'd say, there's nothing wrong with you...but they have no idea what goes on inside. The stress of a tribunal would put me in a bad place with seizures. So sorry for a lengthy comment.x

Submitted by Amanda Wilson on

Hi Amanda
To our understanding, you can get PIP for your needs whether they are caused by your medical condition, or side-effects of your treatment. The main consideration is that you fulfil the 50% rule:

You must need support fifty per cent or more of the time. For example, during a month, you must need support in order to be able to complete key tasks, at least 16 out of the 30 or 31 days of the month. In this situation you might qualify for PIP. But if you only needed support for 14 or less of the days, then you won’t qualify for PIP.

There’s more in-depth information about PIP on our website, as well as a list of organisations who can offer you more specific advice.

If you would like to discuss this further, please call the Epilepsy Helpline freephone 0808 800 5050 and we will do our best to help you.


Kathy Bairstow
Epilepsy Action Advice and Information Team

Submitted by Kathy, Epilepsy... on