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Personal Independence Payment (PIP) for people with epilepsy

This information is for people living in England, Scotland and Wales. Personal Independence Payments are gradually being introduced in Northern Ireland. If you are looking for information about benefits in another country, please contact your local epilepsy organisation.

Review of existing PIP claims

The Department for Work and Pensions has changed its PIP assessment process in two areas: ‘safety and supervision when carrying out activities’ and ‘overwhelming psychological distress and journeys’. They are reviewing all current PIP claims to see if they should have awarded more money. They are also looking again at claims where they didn’t award PIP. This may mean some people will get more money, or be awarded PIP when they were previously rejected. To find out more and to see if your PIP case will be reviewed, visit the following pages at gov.uk:

Safety and supervision: changes to PIP law from 9 March 2017

Overwhelming psychological distress and journeys: changes to PIP law from 28 November 2016

What is Personal Independence Payment (PIP) and how can I apply for it?

Personal Independence Payment (PIP) is a benefit which helps with some of the extra costs caused by long-term ill-health or disability. You must be between 16 and 64 to claim PIP. You can receive it whether you are in work or not. PIP is not means-tested and is tax-free.

The Department for Work and Pensions (DWP) has a series of videos explaining who PIP is for and how the claim process works.


What will I get?

You could get between £22 and £141.10 a week. How much you get is based on how your condition affects your ability to complete certain tasks, not on a particular condition.

PIP is made up of 2 components (parts). You can be paid either the daily living component, or the mobility component, or both components at the same time. Whether you get one component or both depends on how your condition affects you. Each component is paid at a standard or enhanced rate depending on whether your abilities are limited or severely limited.

Rates of PIP

Daily living component weekly rate
Standard: £55.65
Enhanced: £83.10

Mobility component weekly rate
Standard: £22
Enhanced: £58

These amounts were correct in November 2017.

You will need an assessment to work out the level of help you get. You score points according to how difficult it is for you to carry out a list of activities. You need to score at least 8 points to be entitled to the standard rate and at least 12 points to be entitled to the enhanced rate. This is the same for each component.

Can I get PIP?

To qualify for PIP you must be aged 16 to 64. You must have a long-term health condition or disability, and have difficulty with activities of daily living or with mobility. You must have had these difficulties for at least 3 months and expect them to last for at least 9 months.

Daily living difficulties

You may get the daily living component of PIP if you need help with things like:

  • Preparing or eating food
  • Washing, bathing and using the toilet
  • Dressing and undressing
  • Reading and communicating
  • Managing your medicines or treatments
  • Making decisions about money
  • Engaging with other people

Mobility difficulties

You may get the mobility component of PIP if you need help with going out or moving around.

The ‘50 per cent rule’

With a variable condition like epilepsy, you must need help at least 50% (half) of the time to qualify for PIP. This will be considered over a 12-month period, looking back 3 months and forward 9 months.

You can find more information about eligibility for PIP on the government website.

An Upper Tribunal Ruling which could benefit people with epilepsy

Until recently the DWP have interpreted the 50 per cent rule as you being affected by your epilepsy more than half the time. When they have looked at issues around safety and supervision, they have said that in carrying out an activity (such as cooking) it needs to be more likely than not that you would have a seizure 50 per cent of the time. A court ruling in March 2017 (called an Upper Tribunal Ruling) disagreed with the DWP’s interpretation. It said that the PIP assessor should consider these 2 things:

  • How likely it is that you would come to harm and
  • How great the harm could be

The greater the possible harm, the less attention they will need to pay to how likely it is that it would happen.

For people with uncontrolled epilepsy there is always the risk of having a seizure. The level of harm you could come to would depend on what type of seizures you have and how unpredictable they are.

I am under 16 or over 65. What can I claim instead of PIP?

If you are under 16, you can apply for Disability Living Allowance (DLA).

If you are aged 65 or over and not currently claiming DLA, you can apply for Attendance Allowance.

I currently get DLA. How will PIP affect me?

DLA is ending for people who were born after 8 April 1948 and are 16 or over. If you are in this age group and are currently claiming DLA, you will continue to get it until the Department for Work and Pensions (DWP) writes to you to:

  • Tell you when your DLA claim will end and
  • Invite you to apply for PIP

To find out when you’ll be invited to apply for PIP you can use the Benefits and Work PIP self-test.

How do I claim PIP?

View a diagram showing the claim process - download the pdf View a diagram showing the claim process, or read on to find out more about each stage.

DWP have made some videos to explain more about the PIP assessment process.

To start your claim call the DWP on 0800 917 2222. Someone can make the call on your behalf, but you need to be with them when they call.

You can also apply by post by writing to the address below and asking for a form. Bear in mind this can delay the decision on your claim.

Personal Independence Payment New Claims
Post Handling Site B
WV99 1AH

For more information on how to claim, including what information you’ll need to provide, visit the government website.  

To claim in Northern Ireland you can ring the PIP Centre on 0800 012 1573.

Completing the form

Once you have told the DWP you want to claim PIP, they will send you a form called ‘How your condition affects you’. You need to complete and return the form within one calendar month.

You can see an example of the form on the government website.

There are 15 questions on the form. For all the questions bear in mind the information above about the Upper Tribunal ruling and stressing the likelihood of you coming to harm if you were to have a seizure, and how great that harm might be. You could put this information in the ‘Extra Information’ box.

Questions 1 and 2 ask for details of your health professionals, health conditions and medicines, including any side-effects you get. Whoever you put down in this section, they need to know about how you manage your daily activities. If necessary, make an appointment to see them. This gives you the opportunity to make sure they have all the information they need about you.

Questions 3 to 14 are about your ability to carry out daily activities. Each question has tick boxes, and space to describe how your health condition or disability affects your ability to carry out that task. Points are scored if you are not able to carry out a task reliably. ‘Reliably’ here means safely, to an acceptable standard, repeatedly and in a reasonable time.

Question 13 and 14 talk about going out and moving around. The government decided that DWP did not have to consider possible ’psychological distress’ involved in this. But the issue of risk described in the Upper Tribunal information above is the same for moving around as for other activities.

For more advice about how to answer these questions and how to describe how your condition affects you, see pages 15-21 of the Disability Rights UK PIP factsheet. Also see our section below on explaining your epilepsy.

Question 15 asks for any extra information about your health condition or disability and how it affects you.

Supporting evidence

As well as completing the form, the DWP encourages you to send copies of any supporting evidence you have. Getting clear supporting evidence can make a real difference to how successful your claim is. This could include:

  • Prescription lists
  • Care plans
  • Seizure diaries
  • Reports from healthcare professionals
  • Letter from your social worker or carer, or a relative or friend who helps you and knows about your difficulties

If the way your epilepsy affects you varies over time, you could send a diary to show the difficulties you have over a number of days or weeks. You can find more information about keeping a diary to support your claim in Appendix D of the Disability Rights UK PIP factsheet.

Help completing the form

We recommend that you use our information together with the Citizens Advice guide to completing the PIP form.

If possible, make an appointment with a welfare rights unit such as Citizens Advice, to help you complete the form. To make the most of your appointment time, make a rough draft of your answers to take with you.

Returning the form

You need to return the form within one calendar month of receiving it. Always keep at least one copy of it.

The PIP assessment

We want the government to make the assessment process fairer for people with epilepsy. Ask your MP to take the PIP Pledge

Once the DWP has received your form, you will be invited for an assessment with a healthcare professional. They may also contact your doctor, consultant or other healthcare professionals treating you, for more information before your assessment. The assessment takes place in an examination centre, or in your home, depending on which area of the country you live in. If you have to go to them, you can claim travel expenses. You should be given 7 days notice of an assessment.

Taking someone with you

You can take someone with you to the assessment. Ideally this will be someone who can help you feel as relaxed as possible. They will not be able to answer the questions for you, but they are allowed to add information, if you want them to. They could also remind you to look at your notes, if there are things you don’t remember.

Make notes beforehand

A lot of people understandably get anxious about the PIP assessment. And a lot of people with epilepsy have problems with their memory. This can make it really difficult to get all your information across. Making notes beforehand of the things you think will be most important to say can really help once you are in the assessment. Take your notes with you to the interview, along with anything else you think might help.

Ask to make a recording

You can ask to make a recording of the face-to-face PIP assessment. You need to do this well before the day of your assessment. And you need your own equipment. You can do this by calling the Enquiry Centre on 0808 1788 114.

For more information visit the Capita website.
Website: capita-pip.co.uk/en/assessment-process.html

Explaining your epilepsy

The interview will be with a healthcare professional, but they might only have a basic understanding of epilepsy. Make sure you can explain clearly about your epilepsy and how it affects you. Don’t just talk about your seizure frequency. They need to know about all possible impact on your life, including such things as anxiety and memory problems.

You could use the list below to make notes about your situation. You can then take your notes with you to the interview. If you have a seizure diary, you could take this to the interview to help you explain your seizure pattern.

Here is a list of the sorts of things that a person with epilepsy may need to mention in their PIP interview:


  • If there is a particular cause for your epilepsy – for example a brain tumour


  • What happens to you before a seizure. If you get a warning or ‘aura’ before a tonic-clonic seizure, this is actually a specific type of seizure itself. It’s important to describe it as a seizure to the assessor
  • What happens to you during a seizure
  • How often you lose control of your bladder or bowel and any anxiety that may cause
  • How likely it is that you would come to harm if you had a seizure
  • How much harm you might come to if you had a seizure


  • What your seizure recovery is like – for example whether you need to go to sleep, or if your awareness is affected and how much help you need afterwards
  • How long it takes you to recover from a seizure
  • Whether you have had to go to hospital because of a seizure
  • Whether you have recently been injured during a seizure – for example cut your head


  • Whether rescue medicine has been given to you by a carer or health professional after a seizure
  • Any side-effects you get from your medicines

Other issues

  • Any support you are given by a partner or carer
  • Whether your memory and/or concentration are affected
  • Any other impact your epilepsy may have on your life
  • Any relevant information about other health conditions

Answering the questions

The healthcare professional will ask you questions about your day-to-day life, your home, how you manage at work if you have a job, and about any social activities you do (or have had to give up). They may ask you to describe a typical day in your life. When answering, try to explain your difficulties as fully as you can. Tell them about any pain or tiredness you feel, or would feel, while carrying out tasks, both on the day of the examination and over time. Consider how you would feel if you had to do the same task repeatedly. Tell them if you need reminding or encouraging to complete the tasks.

Don’t overestimate your ability to do things

Make sure you are honest about how these activities would feel on a bad day, rather than a good day. Sounding positive about your condition is really useful in general life, but will not help to get you the financial support you may need.

Medical examination

The healthcare professional may, with your consent, give you a brief medical examination. But mostly they will observe how you are during the interview, including how you got there.

At the end of the interview

At the end of the interview the healthcare professional should give you an overview of how they see your situation. And you should get an opportunity to ask questions and add any final information.

The decision

The healthcare professional sends a report to the Department for Work and Pensions (DWP) case manager. They make the final decision.

You will be sent a letter giving the decision and explaining how the decision was made. If you are entitled to PIP, you will be told at what rate and for how long you will be entitled to it.

Your needs will be regularly reassessed to make sure you’re getting the right support. If there’s a change in how your condition affects you, you need to tell the DWP straight away.

Getting PIP may mean your other benefits increase. Make sure you check this out with a welfare rights worker. For example if anyone in your household is getting PIP you won’t be subject to the benefits cap.


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

  • Updated November 2017
    To be reviewed April 2019

Comments: read the 18 comments or add yours


Hi just got a letter through saying not enough evidence but im under invetegation and the letter come after my medicals atos assesors twice have lied said I held a cup ok I didnt have a cup I had my friend with me who helps care for me I am absolutly besides myself now I dont know what to do this supposedly went to a judge I feel like shooting everyone who I know sitting in the pub getting pip and are not no where near ill like me a recluce I am and on my own no help at all am I getting IVE been every where I carnt think straight now they want my friend to record my seizures I get them at night as well I dont know when I get them I am not allowed to drive well I tell you now I will and if I have a seizure then blame them cos IVE had enough xxxx

Submitted by Christine Chees... on

Hi Christine

I’m responding to both of your posts

Thanks for your kind words about our service. I hope MIND can be of some help.

It’s quite common for a person with epilepsy to struggle with low mood. Can I check you know about the range of support that we offer? And maybe there are some tips in our safety information that could be useful for you.

And now you’ve been refused PIP. We regularly hear from people with epilepsy having their PIP application refused. It’s really understandable that you’re feeling angry about this.

We would always suggest people ask for a mandatory reconsideration and usually an appeal too. We do hear of people being successful with appeals. If at all possible it is good to get support with this from a welfare rights organisation like Citizens Advice.

I really hope this information is of some help to you.



Epilepsy Action Helpline Team


Submitted by Cherry-Epilepsy... on

Ive done all this which is exsausting me twice I have been refused then it went to tribnal and still got refused in the meantime the neurologist has said I am showing signs of epilepsy but I need a brain scan in january how can they make a decission while im still having tests for my medication what do I do now do I need a special forms to go to a higher source pls

Submitted by Christine Chees... on

Hi Christine,

Thank you for your email. We completely understand your frustration. Our advice and information line receives many calls about Personal Independence Payment and the assessment process from people who have had similar experiences to you. We know that it can cause a lot of stress and worry for people with epilepsy. 

From an epilepsy point of view, any benefits you are awarded are based on the needs you have because of your epilepsy or other  conditions. The test results are not necessarily going to change your needs, although they might give more information about your condition. And your needs could be less after the tests, if the results mean that you are given appropriate treatment. So, your concern about them not having the test results might not be important.   

As the DWP haven’t changed their mind with your mandatory reconsideration, you can take this to appeal. You now have one calendar month from the date of the mandatory reconsideration notice to lodge an appeal to an independent tribunal.

Asking for an appeal can be a challenge, as the rules can be quite complicated. If you haven’t already, it would be beneficial to get support with this from a specialist welfare benefits advisor, as their knowledge and experience can be invaluable. Organisations such as Citizens Advice or a local welfare rights unit can provide support with appeals.

We have information on PIP and epilepsy.. Please feel free to print this off and take to any meeting you have with a welfare benefits advisor. (I can send you a printed copy if you can’t print it yourself).



Epilepsy Action Helpline Team

Submitted by rich on

Hi. I used to get DLA then got changed over to pip. I had an interview in my own home with an assessor who asked if I could plan and follow a journeys I told her yes but won’t go to far from home without been accompanied Incase I’m ill and need get home. In the reply decision all they say is I told them I can plan a journey and was witnessed walking fine in my own home so this proves I don’t need help when traveling. I was also asked about how my fits affect me and my social skills going out ect. I told the woman I an struggle making new friends who will accept my disability and get depressed that I can’t do things others my age take for granted like going the pub or theme parks, learning a trade. In my reply they said they can’t accept this has I proved I could talk to the assessor fine and went to college. She asked what happens before and after a fit I told her has I can discribe spaced out get confused and really tired in the reply letter they said I I don’t have proof of this. Even tho I sent a letter from my doctor saying I’m epileptic an suffer depression. She asked how I managed my meds I told her they are kept locked away and in a blister box so my mom knows I’ve taken my tablets correctly if I’m ill ever since I had a fit in the past during taking my pills and took loads an nearly OD I showed the woman where they are locked and kept in a blister box. There reply was I come across in the interview clever enough to not need help managing meds. I really feal bad about this and don’t know where to turn for help and it’s afecting my health even more has I’m stressing like mad and not sleeping 2 things that don’t help people with epilepsy :( it’s has tho they want you to fail and don’t understand epilepsy an the actual affects it has on folks life’s because it’s not visable 24/7. Is there any face to face help I can get with chalanging this. What do you suggest. My local citizens advise said they don’t have a disability advisor to help me.

Submitted by Nathan on


I’m sorry to hear your PIP assessment didn’t go well.

If you haven’t already, you may wish to view our information on PIP and epilepsy. Should you decide to challenge the decision we also have information on what you need to do when refused PIP.

It is difficult to get face to face support for benefits. As your local Citizens Advice can’t help, you could contact DIAL UK they may be able to refer you to someone (provided there is someone in your area).

You could also see if there is a Welfare Rights Unit within your local council. They can give free advice and support on benefits. Some can also help with completing claim forms and appealing benefits decisions. Contact your local council to find out if they have a Welfare Rights Unit.  

You could also ask at your college if there is a welfare rights officer who may be able to advise you on this. 

People with epilepsy are at a high risk of becoming depressed. For this reason we have our epilepsy and depression information.

If you haven’t already, you could contact MIND to see if they have local office that can provide you with advice on your PIP and depression.  



Epilepsy Action Helpline Team

Submitted by rich on

I received four points for care in regards to safety, cooking and washing.
My memory issues were completely dismissed as not even existing. This is despite it being a side effect of my medication and condition.
I accept I might not have filled the form in properly because the person helping didn't know how to do it either.
But how do you provide evidence of memory problems for those descriptors. I knew where I went to school, I struggled with the memory test but you have no impairment.
Bizarre really as I can't plan a journey-I can't process it, get muddled, forget and I scored the full 12 points, though they may decide that was on safety because it's not clear it's either or.

Submitted by Sam on

My partner suffers with epilepsy, she currently receives esa support group contributions based, this was won on appeal. We now find ourselves fighting the change over from flat to pip, she scored 0 point and this is with medical evidence and supporting letter from her gp. She also suffers with a learning difficulties, I have asked for a mandatory reconsideration and yet again she scored 0 points. This is now awaiting tribunal appeals wow how much is all this costing? The pip phoned the other week, saying that before they send the case notes off to the courts they have looked at the case notes and decided that she can have full mobility, they say she not scored enough for the daily living. I really do not understand why you need a mobility car out and about cause you need help but do not need help at home!!!! I have said take this to appeal but there is a 37 week wait we are only on week 10. These benifit people really do not understand epilepsy we had a nurse come around saying she was epilepsy trained ha ha think she ment she had done a weeks course. This is all so frustrating I understand that the benifit system needs to change but when you clearly have evidence off your doctors what is this all about!!!!

Submitted by William Martin on

Hi William
Yes, applying for PIP can be a deeply frustrating process. Epilepsy Action have beencampaigning for changes to this as we definitely feel many people with epilepsy have not been treated fairly.

Although your partner has been refused at first and at mandatory reconsideration, there is still a chance that she will be successful on appeal. This has certainly happened for other people with epilepsy we have spoken to.

Hopefully you have seen our separate page on what to do if you have been refused PIP.

Epilepsy Action Helpline Team

Submitted by Cherry, Epileps... on

I have uncontrolled, daily seizures and was awarded 12 points mobility and only 6 for care. 4 for making a meal, even though I do not cook at all.
2 for washing as I need assistance or prompting.
My main problem is during a seizure and afterwards. I can’t see, hear, speak. Am not aware of anybody or anything. But because the assessor didn’t witness this apparently I’m fine.
Everything I told her was written down then disregarded and she put in her opinion which is what the DM went with near enough word for word in his report.
Ive put in an MR even though I risk what I’ve been already awarded. I shall take it to tribuneral if necessary.
Surely I should come under the pip safety requirements .
As I’m a liability to myself and possibly others on a daily basis which could be a matter of life or death

Submitted by Susan Cartlidge on

my son has tonic clonic seizures that are controlled and partial complex seizures that are very poorly controlled. he suffers with severe depression, his hypocampus is very badly damaged from meningitis as a baby. he is severely underweight and has severe memory problems. He received DLA for years and has been turned down for PIP twice. they say because he lives alone and can manage independently he is fine. I am his carer, he desperatly wants his independence, but need help with budgeting, taking his medication and remembering to eat and drink sufficiently at 5'11 he weighs 8st 5lbs and they have reported he is well nourished. I am at my wits end with it. we will go to tribunal, I will fight this all the way. all he wants is enough money to pay his bills and food. at present, I am buying his food. any advice would be very useful.

Submitted by Maureen Brindley on

Dear Maureen


We completely understand your frustration. Our advice and information line receives many calls about Personal Independence Payment and the assessment process.


We have heard from many people who have been refused PIP but when they have gone to an appeal many have had the decision changed. Applying for benefits or going through an appeal can be a challenge, as the rules can be quite complicated. If you haven’t already, you may wish to view our information on PIP and epilepsy.  If you think you son has been assessed wrongly it would be beneficial to get support with this from a specialist welfare benefits advisor, as their knowledge and experience can be invaluable. Organisations such as Citizens Advice or a [gov.uk/find-your-local-council]local welfare rights unit can provide support with reconsiderations and appeals.


If we can be of any more help, please feel free to contact our helpline team directly. You can either email helpline@epilepsy.org.uk  or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.





Epilepsy Action Helpline Team

Submitted by rich on

i have just had information, (verbaly)that my daily living component of pip has been cut and my mobility enhanced to top level. does this mean a total cut in daily living or maybe just partial.? anyone know?

Submitted by craig thomas on

Hi Craig, 

Whether or not it is a total or partial cut of your daily living component will depend on your individual circumstances. It might be a good idea to check this with the DWP.



Epilepsy Action Helpline Team

Submitted by rich on

I really need some advice. I was stopped PIP last December. Living on £210 a fortnight esa. I am waiting to go with a solicitor which he will take 33% & has assured me i will win. Not only for epilepsy but for other medical issues cyst on brain had radiation. Growth o my intestine had an operation left me with bowel probs. Depression. Tried to OD. Phoned up PIP. Went through all security questions. Told them they will have blood on there hands & i am going to take overdose of all my medication. As i cant live with my medical problems. Next half an hour i had Police & Ambulance at my door. Just want to ask all of you people do you think i will get back my PIP? I will be so happy with replies. Thank you.

Submitted by Philomena on


Thank you for your message. I’m sorry to hear you’ve had such a tough time.

Unfortunately, we are hearing all too regularly from people with epilepsy that they’ve been refused PIP. The good news is that some people are successful at appeal. And we are campaigning to improve things.

If you would like to talk to us about this you could give us a call on our freephone helpline 0808 800 5050. We are open Monday to Friday 8.30am-5.30pm.



Epilepsy Action Helpline Team

Submitted by rich on

I was working back in 2000 and in 2005 my epilepsy was triggered n, I wasn't even allowed to claim for PIP or DLA it had to be UC (when it came into force, it was JSA before) because I had worked in the past n, now I have seizures nearly every week. The last one was when I was walking down the side of a main road and the DWP's answer was to put me on a CSCS Course costing nearly £400 n, the best bit I wont be able to use it when I have it.

Submitted by Anthony Marchant on

Had my DLA stopped in October after being told by DWP that I did not it anymore. Have a case being dealt with by the HM Appeals Court and waiting for their outcome. The DWP had letters from my Consultant and GP about my epilepsy, but did not agree. They have made me so angry that I am now at the end of my driving lesson, after giving false information to the DVLA and hope to pass before Christmas and start a new career in training to become a lorry driver. Even wrote to my local MP and sent copies of medical reports, but he was not too concerned..

Submitted by Paul Tucker on

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