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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

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

Turn2Us
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

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

GOV.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
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 Helpline by email at helpline@epilepsy.org.uk.

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.
Code: 
F060a.04

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

  • Updated June 2014
    To be reviewed June 2015

Comments: read the 21 comments or add yours

Comments

hi my 8 year old son has recently had a stent fitted which now means he is unable to do some things he used to do in his hobbies, would i qualify for D.L.A please ?????????????

Submitted by sarah price on

Hi Sarah

If your sons stent was fitted for neurological reasons, you may find it helpful to contact Cerebra on 0800 328 1159. They have produced a step-by-step guide to claiming DLA for children under 16 with brain-related conditions.

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.

Diane Wallace

Advice and Information Team

Submitted by Diane on

I am 17 and suffer from juvenile myoclonic epilepsy. My seizure are random and don't give me any warning plus its normally a cluster of them. As I am also unable to drive, and cannot be left alone at home for long periods, unable to be shower or bathe or cook unless someone else is in the house with me and they are aware that I am doing so and when cooking supervise and when showering need to be checked or the door left open and unlocked. In the past I've incurred injured during my seizures which have included in being hospitalized for burns, head injuries and in one case unable to walk properly for a few days. I'm I able to qualify for DLA/PIP?

Submitted by Alice on

Hi Alice

Thank you for your message.

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

We can’t say whether you would qualify for PIP because it depends on your individual circumstances.

To qualify for Personal Independence Payment (PIP) you must be aged 16 to 64 on 8 April 2013 and have difficulty with:

  • ‘activities of daily living’
  • mobility

You must have had these difficulties for three months and expect them to last for at least nine months. You can get PIP whether you are in work or not.

Here is our information about PIP.

If you need help about whether you are entitled to PIP or help with making a claim you could contact the citizens advice bureau
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, and 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: adviceguide.org.uk

Or

Turn2us is a confidential service which helps you to find out about benefits and grants you may be entitled to.

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

Alternatively you can click here for organisations that offer benefits advice.

It must feel both scary and frustrating that your seizures are not controlled. When did you last have a review of your epilepsy?

It might be a good idea to speak to your epilepsy specialist and talk to them about the problems you are having. They should be able to review your epilepsy to make sure you are getting the best treatment and care.

Do you have an epilepsy nurse? Epilepsy specialist nurses can spend time with you discussing your epilepsy, your treatment and any problems you may have, that are related to your epilepsy.

If you would like to find out if there is an epilepsy specialist nurse in your area, contact your GP (family doctor), your epilepsy specialist or Epilepsy Action.

If we can be of any more help please feel free to contact us again either by email or the epilepsy helpline freephone number 0808 800 5050.

Kind regards

Vicky

Advice & Information Team

Submitted by Vicky on

My 5 year old daughter has epilepsy her tonic-clonics are nocturnal and she also has absences throughout the day she is on lamotrigine and sodium valproate which has brought the amount of seizures down from daily to every couple of weeks (absences still daily). She gets extremely tired before a big seizure and wont eat sometimes for up to 3 days. I have to stay awake the whole time waiting for her seizure. She was getting dla care but when I re applied for it they said she didnt need more supervision than an average child of her age!!!! Ridiculous I have an older child also and my younger child with epilepsy takes most of my time.

Submitted by ann-marie on

Dear Ann-Marie

If you think the decision to withdraw your daughters DLA is incorrect, you could make an appeal against the decision.  To help with this you may wish to view the information on Cerebra website. Cerebra have produced a step-by-step guide to claiming DLA for children under 16 with brain-related conditions, including epilepsy. Also in some parts of the UK, they have regional officers, who can help with forms and appeals.

You could also contact a local welfare rights organisation. In some cases, they too may have someone local to help you with your appeal and form completing. 

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

Diane

Submitted by Diane on

I have a seizure disorder age 23 and i'm having almost 20 seizures a week and constantly resting i.e sleeping to recover when i start to feel better i will always have another seizure and it's just repeat repeat repeat always resting and this happens day and night round the clock.

i have an appointment at the court to appeal my DLA on the 9th jan 2014 i'm trying to fight against the decision for me to be moved up from middle rate care to high rate care and i feel like i'm going to be unsucessful if any one can give me advice tips or help with the right answers i would be over the moon

Submitted by Mr Gardiner on

Hi

It sounds like you are having a really hard time with your epilepsy. If someone is appealing against a decision for their DLA, we would normally advise them to get help from their local welfare rights unit or Citizens Advice Bureau.

I am also linking you to our information on Personal Independence Payments. This is what DLA is being replaced by, but the questions are very similar.

Do make sure you are describing how things are for you at your worst. This can feel difficult, but it is the information the assessors need. And a supporting letter from your doctor is always valuable.

I’m sorry we don’t have a definite solution for you. But I do hope this information is useful.

Rosanna

Advice and Information Team

Submitted by Rosanna on

hi, ive got my dla appeal on thursday bit worried about it, as bin rufused so took it to the tribunal, i have tonic coloic seizures of epilepsy since dec 2012, im on keppra and lamotragine but still not stablised the meds make me feel like a zombie and have a bad temper.just wondering if anyone else been to tribunal and what happened thanks

Submitted by kelly-marie on

Because I suffereda compound fracture of my spine during my last seizure (which are now controlled by Lamotrogine) I have been off work for almost 4 months, I have been having hydrotherapy and physiotherapy which is helping but I have been told my spine will never heal but I will be able to have medication to help with the pain caused by the muscle spasms caused by the injury. I am unable to lift anything heavy and find stretching up to do anything painful. I only have a bath and am therefore having to go to my daughters to shower as I am worried about having a fit whilst bathing. She is helping me with all my housework and although I am returning to work as a Teaching Assistant on a phased return in a couple of months I am concerned that I will be unable to take care of myself properly without my daughters help. I cannot do my shopping on my own as I cannot drive due to the epilepsy and I cannot carry the bags. Can I still claim DLA or PIP if it is my daughter that is helping me with all this and not an outside agency?

Submitted by Cathie Palmer on

Hi there I'm wondering if you could help me my son was diagnosed with nocturnal epilepsy in May 2013 he takes seizures 2-3 times a night he's took some during the day aswell evry time he has a seizure he souls himself but he took a seizure yesterday and his bowels actually moved this has never happened before he's on episenta 1x300mg capsule 1x150mg capsule twiced daily and also keppra 35mls twiced daily he's bn refused dla can u tell me why this is he needs help night and day his seizures are unpredictable after he has a seizure he is disorientated m won't eat or drink jst wants to sleep all day and his wee bones are all sore cud somebody explain to me why he gt refused I'm currently waitin to go to appeal thanks

Submitted by Leeann on

Hi Leeann

Everyone is a assessed on an individual basis. If your son is a child, you may wish to get a copy of the free guide from the charity Cerebra. This guide takes you through each stage of applying for Disability Living Allowance for children under 16, with brain-related conditions. Tel: 0800 328 1159  Website: cerebra.org.uk.

If your son is an adult you may wish to view our Tips information on claiming the DLA.

Many people find that their claims or appeals are more likely to be successful if they have help with completing the forms. You can get help from the following sources:

  • Benefits Enquiry Line
  • Tel: 0800 88 22 00
  • Benefits Enquiry Line for Northern Ireland:
  • Tel:0800 220 674
  • Disability Rights UK 

 for downloadable fact sheets
Website: www.disabilityrightsuk.org

  • Citizens Advice:

for details of branches in 
England:  0844 4111 444
Wales:     0844 477 2020
Text Relay:    0844 4111 445
Website: www.adviceguide.org.uk

As your sons seizures are not controlled, I hope he is seeing an epilepsy specialist. They can review his treatment and look at other possible reasons for his seizures to still be happening. They may suggest trying a different epilepsy medicine.  If he has tried various types of epilepsy medicines, it may be the specialist could look into other treatment options for him.

If your son is not under a specialist, you will need to ask the family doctor or his general paediatrican to refer him to one. People with difficult to control epilepsy may be offered a referral to a team of very highly trained healthcare professionals in a specialist centre. This is known as a tertiary centre or tertiary service. This information is taken from the NICE guidelines.

As your son is experiencing double incontinence, you may wish to look into protective underwear and support he may be entitled to. For children you could contact the charity ERIC for advice. For information relevant to adults please contact NHS choices.

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

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.

Regards

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. 

Kathy

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

Diane
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.

Regards

Diane
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.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

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