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Disability Living Allowance (DLA) for people with epilepsy

Changes to Disability Living Allowance

Disability Living Allowance (DLA) is changing on 8 April 2013. The changes will be made gradually. The Department for Work and Pensions website currently says most people getting DLA won’t be affected by these changes until October 2015 or later.

People who will still be able to claim DLA

Children under 16
People of 65 or over who are already claiming DLA

People who will not be able to claim DLA in the future

From April 2013

The new scheme is happening in some areas before others. So you will no longer be able to claim DLA if you are between 16 and 64 years old and you live in Merseyside, North West England, Cumbria, Cheshire and North East England. You will have to apply for a Personal Independence Payment (PIP) instead.

The new scheme will be introduced a little later in all other areas.

Anyone who currently claims DLA but wants to change something about their claim after 30 September 2013, will have to apply for PIP instead. If your current claim ends after 30 September 2013, you will have to apply for PIP.

From June 2013

Anyone between 16 and 64 who wants to make a new claim for DLA will have to apply for PIP instead.

The invitation

It is worth remembering that if you are “invited” to change to PIP, this means you must do it. If you say no thank you, your DLA will stop.

Epilepsy Action has more information on Personal Independence Payments.

More information on DLA is available from the government website.

Some of this information is changing regularly. Always check with the government website for the most up-to-date information.

 

In this section

Adults

Children

What Disability Living Allowance is

Disability Living Allowance (DLA) is a tax-free social security benefit for people with an illness or disability. You may get DLA is you are under 65, you’ve had an illness for three months and expect to have it for at least six months.

If you’re 65 or over you may qualify for Attendance Allowance.

DLA is for people who need help with:

  • getting around
  • personal care, or
  • both of these.

You can claim DLA even if you:

  • do not actually get the help you need
  • live alone, or
  • are working.

DLA is made up of two components (parts). You may qualify for just one component or both components.

  • The care component - if you need help with your personal care because of your disability.
  • The mobility component - if you need help to get around because of your disability.

Online self assessment

To get an idea of whether you would be able to get DLA, go to the government’s online benefits adviser assessment tool.

How to apply for Disability Living Allowance

To apply for DLA, you need to complete an application form. There are two forms - one for people under the age of 16 and one for people over 16. You can order a claim pack by:

  • phoning the Benefit Enquiry Line for People with Disabilities:0800 88 22 00 (England, Scotland and Wales) or 0800 220 674 (Northern Ireland)
  • contacting Jobcentre Plus: 0800 055 6688, or your local social security office
  • downloading an application form from the government website
  • you can also complete the form online

Help with completing the Disability Living Allowance form

Many people find that their claims are more likely to be successful if they have help with completing the claim 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

Tips for completing the Disability Living Allowance (adults) form

  • You don’t need to answer questions that don’t apply to you. 
  • Don’t assume that the person who deals with your claim knows about epilepsy or its symptoms and effects. Give lots of description and detail about your seizures and recovery time. Include anything that you think is relevant to your epilepsy. Don’t leave something out because you find it embarrassing.
  • Include information about any side-effects you experience from your epilepsy medicine.
  • Don’t worry if you give the same information more than once. It’s better to give too much information than not enough. 
  • Try to explain clearly the type of help you need, the reason you need it and when you need it. 
  • Make it clear what you think might happen if you didn't have supervision or someone keeping an eye on you.
  • Describe any past incidents to do with your epilepsy that could have resulted in harm to yourself or others if you hadn't had help.
  • Make it clear that you need help, even if nobody helps you at the moment. 
  • Put what you can’t do, not what you can do. 
  • It is a good idea to use the terms ‘bad days’ and ‘better days’ rather than ‘bad days’ and ‘good days’.
  • Try to give an average number of bad days over a given period of time (for example eight days out of 14). You stand more chance of succeeding if you can show that you need help on most, or all, days of the week. 
  • Keep a diary of your seizures. This can help you to work out how much help you need over a period of time. It can also be used as supporting evidence for your claim.
  • If you have other illnesses or disabilities as well as epilepsy, ask for help in answering questions about them. This may be from your doctor or another organisation who knows about that condition. If you would like help to find details of a particular health organisation, phone the Epilepsy Helpline, freephone 0808 800 5050 or send an email to www.epilepsy.org.uk 

Rates of Disability Living Allowance

Disability Living Allowance (DLA) is paid at different amounts, depending on the amount of care or help with mobility you need. This table shows the different levels of DLA. It was correct at the time of writing, June 2013.

Care allowance


Level 

Qualifying age 

Qualifying needs 

Amount 

High

3 months - 64 years 

Help or supervision throughout the day and night 

£79.15 a week 

Middle 

3 months - 64 years  

Frequent help or constant supervision during the day throughout the day or supervision at night 

£53 a week

Low 

3 months - 64 years  

Help for or with preparing cooked meals

£21 a week 

Mobility allowance


Level 

Qualifying age 

Qualifying criteria 

Amount 

High 

3 years - 64 years 

You have a severe walking difficulty

£55.25 a week  

Low 

5 years - 64 years

Needs guidance and supervision when moving around 

£21 a week 

Applying for Disability Living Allowance for a child

Cerebra is a charity for children with neurological problems. They have a free guide which 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

All the above information was accurate at the time of writing. Please see the relevant government website to check for updated information.

If you would like to see this information with references, visit the Advice and Information references section of our website. See Disability Living Allowance.

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: 
F060a.02

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

  • Updated June 2013
    To be reviewed June 2015

Comments: read the 36 comments or add yours

Comments

Hi, I have eplilepsy, took it 12 years ago and when I did I applied for dla and receive middle care and low mobility. Although this is not relevant I was working and got the sack for taking siezures so I applied for ESA and after a while I was sent for a medical which I failed because aparantly I'm conscious and awake during waking hours so now I'm on jsa. I do get extra money on jsa because they say I'm severely disabled. The system is totally messed up. For anybody who wants to apply for dla for epilepsy do as there is people out there making false claims and shouldnt be getting it. It's not hard once you get the forms filled out properly but make sure you make a photocopy of them before you send them off as you might not remember what all you wrote down and when they might send a doctor out to your home. Good luck.

Submitted by Michelle on

My two year old daughter has been diagnosed with focal seizures with secondary generalisation. Both my wife and I have agreed not to medicate at the moment. Are we able claim DLA?

Submitted by BobbyG on

Hi BobbyG

I have tried to find the answer to your question, but have had no success. Cerebra, who have a guide for claiming DLA for children, do not know either. They suggest you go ahead with the application, but be prepared for the decision to go either way.

Kathy
Advice and Information Team

Submitted by Kathy@Epilepsy ... on

our 2 year old son has been diagnosed with ideopathic epilepsy, he was in hospital in october for a week, previous to that he has hed one spell in hospital short term and a stint in PICU after a siezure which lasted well over an hour at 13 months of age. Whenever he is ill he tends to suffer, he is now on medication but at certain times of the day seems either stoned or hyper beyond controll. his appetite is very hit and miss now and we often have to try him with several meals to our one to get him to eat. are we entitled to D.L.A.?

Submitted by jane morrison allen on

Hi

I’m sorry to hear that your son seems to be having such a bad time of it. So, it's certainly worth applying for DLA. You can find out if your son might be able to get DLA by contacting Cerebra . They have produced a step-by-step guide to claiming DLA for children under 16 with brain-related conditions, including epilepsy.

It’s likely that your son is already seeing a paediatrician as he seems to have some problems with his epilepsy. However, does his paediatrician specialise in epilepsy? If not, you could contact our Epilepsy Helpline 0808 800 5050 and we can see if there’s a children’s epilepsy specialist in, or around, your area.

Rosanna

Advice and Information Team

 

Submitted by Rosanna@Epileps... on

My seizures are controlled with Lamotrogine, but I have side effects from the medication and still have to be very careful not to get stressed or tired etc...I also have to get my partner to bath our son every day and cook, drive etc when I am 'under the weather'.

I am not sure if this is enough of a constraint on life to qualify for DLA?

Submitted by Tanya Ellis on

Hi Tanya

Sometimes the side effects from an epilepsy medicine affects a person’s quality of life. So if this is the case it’s worth talking to your epilepsy specialist about it. They could see if a change in your epilepsy medicine is needed as qualify of life is just as important as seizure control.

About your DLA query, it would be worth talking to an organisation who can give specific benefit advice. This is because the DLA will no longer exist from April this year. The new benefit is called Personal Independence Payment (PIP). For more details about PIP this can be found on Department of Work and Pension’s website.

We have details of organisations who give advice on benefits on our website. These organisations differ depending on the UK country you are from. To find details of these organisations, click on link, then the UK country you are from, then scroll down to the bottom of the website.

Rosanna
Advice and Information Team

Submitted by Rosanna@Epileps... on

Hi my daughter has epilepsy and has a rare genetic disorder which affects her learning she is in a special school and has mild speech problems and has massive anxiety issues and has problems telling people including me if she feels poorly or hurts etc so her fits are hard to spot. I have issues getti g her in and our of the car as she is so frightened of dogs.loudnoises.cars. High viz vests. Police . Etc. just found our about dla and my friend informed me I could gethelpwith tax on my car and another friend has said she has to be in wheelchair? Any help or ideas plz?

Submitted by Louise on

Hi Louise

Thank you for your questions.

For advice and help with your daughter’s situation, you may wish to contact welfare rights organisations. Such organisations can check you are getting the correct benefits to help you give your daughter the support she needs. Here are some organisations we are aware of:

 

Tel. 0808 802 2000 www.turn2us.org.uk

You may also wish to contact Cerebra: http://www.cerebra.org.uk/: tel 0800 328 1159. They have produced a step-by-step guide to claiming DLA for children under 16 with brain-related conditions, including epilepsy.

If you think it will help to talk to someone on our helpline team regarding your daughter’s epilepsy, please feel free to contact us. You can email or phone us using the above contact details.

Diane Wallace
Advice and Information Team

Submitted by AndyWeb on

my son (16) has photo sensitive epilepsy and was previously in reciept of DLA but this was stopped after 18 months they say he is not eligible to claim anymore. i feel that this is for no reason other than goverment squeeze on disabled and due to the fact fraudulent claims have now seriously affected the whole benefit process which is bleeding money away from genuine claimants. my son has had 3 seizures in the last 3 months and on one occasion causing facial injuries as a result of falling over in the bathroom (they say he dont need assistance) as well as having his medication reviewed and increased to an astounding 3000mg of meds daily, which now is being re-reviewed by his epilepsy doctor in the next few weeks, but he is STILL not eligible to claim. i think this is an issue where they are clearly decieving the disabled people of this country and something needs to be done in the high courts, where do we legally stand on this issue? as i feel we are being mislead by our government and benefit advisers, we are seriously considering a legal challenge with the DWP.

Submitted by Mr white on

Dear Mr White

For many people receiving or applying for the DLA it is proving to be a difficult and stressful time.

If you haven’t already you could approach the Department for Work and Pensions (DWP) for a revision, supersession or appeal on their decision. Here is a link to the Disability Rights UK factsheet that explains how to seek to change a DWP decision by asking for a revision, supersession or appeal.
http://www.disabilityrightsuk.org/f36.htm

If you do decide to challenge the DWP decision, you may wish to get help from one of the following organisations who specialise in welfare benefits. They can provide more information about your son’s eligibility to receive the DLA and help you to complete any relevant forms, if needed.
• Citizens Advice Bureau
For details of your local branch, tel. 020 7833 2181
www.adviceguide.org.uk
• Dial UK (Disability Information and Advice Line Services)
Tel. 01302 310 123 www.dialuk.org.uk
• Disability Alliance
Tel. 020 7247 8776 www.disabilityalliance.org
You may also wish to get a copy of our publication a Guide to completing the Disability Living Allowance (adults) form for people with epilepsy. You can order this from our shop, or by ringing the Epilepsy Helpline freephone 0808 800 5050.

Epilepsy Action actively campaigns to improve epilepsy services and raise awareness of the condition. We are constantly monitoring the welfare benefit changes. We are also given the opportunity to comment on consultation papers to do with welfare benefit changes. This is all done by our campaigns team. If you feel you would like to be involved with our campaigns we have a Campaign Supporters’ Group.
http://www.epilepsy.org.uk/involved/campaigns/supporters-group

You may at a local level wish to talk to your local MP. Some local MPs can be very supportive and value feedback back from their constituency.

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@Epilepsy ... on

Hi I have a form of night epilepsy and photo sensitive epilepsy. I'm working at the minute but I am finding that am i am getting more fits from the stress of the work that I do as. My fiance is having to watch out for me especially at nights and this is putting a strain on him as well. I did not realise that you could claim any benefits from having epilepsy and was wondering if you could help me with any information of what I can do.

Submitted by Kelly on

Hello Kelly

There are a number of different organisations who can give you benefits advice to suit your individual circumstances, depending on where you live. You can find details of these by clicking on your country on the Benefits for people with epilepsy web page.

I hope this helps.

Amanda
Advice and Information Team

Submitted by Amanda@Epilepsy... on

In your "disability rates" info. you give ages up to 64. I'm 69 and have had epilepsy since 1968, mild (focal) and worked at one time. I didn't know you could claim DLA. Why to 64 and what about older?
Many thanks

Submitted by Pearl Gordon on

Hi Pearl

 

People with epilepsy don't automatically qualify for a disability benefit, such as DLA. This is a benefit that, as you mentioned, people aged 64 and under might qualify for. However, people aged 65 and over might still qualify for help with care because of their epilepsy.  This benefit is called Attendance Allowance (AA).

 

You can find further information about AA on the gov.uk website. https://www.gov.uk/attendance-allowance.

 

Rosanna Burrill
Advice and Information Team

 

Submitted by Rosanna@Epileps... on

My son aged 20 was diagnosed with Epilepsy last year following an old head injury. He is on medication for grand mals. He has not claimed for DLA but now with the new regulations, from April, will he qualify for the benefit?

Submitted by sadiyah muhammad on

Hello Sadiyah,

People with epilepsy don't automatically qualify for a disability benefit.

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

Entitlement to PIP isn’t based on a person’s disability, but the help they may need because of their condition or disability. Personal circumstances are taken into account and the impact that the condition or disability has on a person’s ability to live independently.

We can’t say whether your son would qualify for PIP or not, your son’s circumstances and needs would be assessed on an individual basis. 

Kind regards

Vicky

Advice and Information Team

Submitted by Vicky@Epilepsy ... on

Hi there.
I get dla lower rate mob middle care. I have grand mal epilepsy sonce aged 8. I take epilim 1500mg a day.
Ihave been offered a 30hr week cleaning job and have accepted. I have been told by many I will not lose my dla is this correct? As its not means tested and dla does not go by wage rather that health

Submitted by jo on

Hi

Yes that’s right, the DLA isn’t means tested. So the amount that you receive isn’t anything to do with your income, it’s given for costs of any care that you need because of your epilepsy.

 Rosanna

Advice and Information Team

Submitted by Rosanna@Epileps... on

Hi my son is 2 he has seizures but nothing has showed on the EEG for epilepsy , he is on epilim and wakes up with night terrors regularly , he also has at least one seizure a week , is he entitled to dla ?

Submitted by Michaela on

Hi Michaela

It’s possible for an EEG to be normal even when someone has epilepsy. Unless your son was having a seizure at the time of his EEG test it could have a normal result. Interpreting a childs EEG is very complex. However, they wouldn’t have put him on Epilim unless they felt it’s likely he is having epileptic seizures. If you would like to read more about the EEG, this can be found on our website. http://www.epilepsy.org.uk/info/diagnosis/eeg-electroencephalogram

I can’t assess if your son would be entitled to DLA but it’s certainly worth applying. The organisation Cerebra has a step by step guide to filling in the DLA form for parents of children with brain related neurological conditions, such as epilepsy. http://www.cerebra.org.uk/English/getinformation/publications/Pages/DLAGuide.aspx

I do hope this is helpful.

Rosanna
Advice and Information Team

Submitted by Rosanna on

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

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