Personal Independence Payment (PIP) and epilepsy

This information is for people living in England, Scotland and Wales. For Personal Independence Payment information in Northern Ireland visit nidirect. If you are looking for information about benefits in another country, please contact your local epilepsy organisation.

What is Personal Independence Payment (PIP)?

PIP is a benefit which helps with some of the extra costs caused by long-term ill-health or disability. You must be aged 16 or over and have not reached state pension age to claim PIP. You can receive it whether you are in work or not. PIP is not means-tested and is tax-free.

Can I get PIP?

To qualify for PIP you must be between 16 and your State Pension age. 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. You can get PIP whether or not you’re working.

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.

I am under 16 or of State Pension age. What can I claim instead of PIP?

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

If you have reached State Pension age 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:

  • Tells you when your DLA claim will end and
  • Invites you to apply for PIP

What will I get?

You could get between £23.70 and £152.15 a week. How much you get is based on how your condition affects your ability to complete certain tasks, not on having 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: £60
Enhanced: £89.60

Mobility component weekly rate

Standard: £23.70
Enhanced: £62.55
These amounts were correct in April 2021.

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 between 16 and your State Pension age. 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. You can get PIP whether or not you're working.

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.

I am under 16 or of State Pension age. What can I claim instead of PIP?

If you are under 16, you can apply for Disability Living Allowance (DLA).
If you have reached State Pension age 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

How do I claim PIP?

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. Lines are open Monday to Friday 9am to 5pm. Making your claim by phone means your claim starts from the date of the phone call.

You can also write to the address below and ask for a form. Bear in mind this can delay the decision on your claim, as the form can take 2 weeks to arrive.

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

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

How is the PIP assessment made?

Completing the form

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

You can see an example of the form and some guidance on how to complete it on the Citizens Advice website.

General guidance on answering the questions

It can be hard to complete this form if you have a variable condition such as epilepsy. Hopefully this guidance will help you get across the important information about how your epilepsy affects you.

The ‘50 per cent rule’

With a variable condition like epilepsy, you must need help at least 50 per cent (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.

However an Upper Tribunal ruling in March 2017 instructed the DWP to bear in mind two things when considering safety and supervision for a person applying for PIP. When assessing a person’s ability to carry out an activity, assessors should consider:

  • How likely it is that you would come to harm
  • How serious that harm could be

The greater the possible harm, the less attention the assessor 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. This impact is something it is important for you to explain on the form. If you are struggling to fit this information in the body of the form you could always add it in the Extra Information box at the end of the form.

Questions 1 and 2
These questions are about your health conditions and medicines, including any side-effects you get. They also ask for details of your healthcare professionals. 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 12
These questions 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 activity. Points are scored if you are not able to carry out an activity reliably. ‘Reliably’ here means safely, to an acceptable standard, repeatedly and in a reasonable time.

Questions 13 and 14
These questions are about going out and moving around. DWP will not consider the psychological distress that may be involved in you moving around. But they will still need to consider the likelihood and seriousness of harm you may come to.
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 or the Benefits and Work website which specifically mentions epilepsy. Also see our section below on explaining your epilepsy.

Question 15
This question 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 evidence 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
  • Contact details of anyone involved in your care

Sleep seizures

If you have sleep seizures, this should not be an automatic reason to give you no points. The following could affect your ability to carry out the tasks in the PIP questionnaire:

  • If the effect of sleep seizures continues into the following day, or
  • Your memory is affected, or
  • You are having problems with side-effects of your epilepsy medicine

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. Make it clear if you are estimating. Also say how you are on your good days and your bad days. And give an idea of how often you have bad days and how the way in which you’re affected changes from day to day.

Make sure you include information on any health conditions you have, not just your epilepsy. Describe how they affect your daily living and your mobility.

The DWP has said there are things which it is not useful to send:

  • Appointment letters or cards
  • Letters arranging hospital admissions
  • General information or factsheets about your condition
  • Information about tests you’re going to have
  • Bus or train tickets to appointments you’ve attended
  • Information you’ve sent to DWP before for PIP

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. And take our PIP and epilepsy information too. This will give you the best chance of making a successful claim.

The government also has a list of community support organisations where you may be able to get help.

Returning the form

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

If you need to include extra pages make sure each page has on it:

  • Your name and
  • Your National Insurance number and
  • The question number that the information is related to

The face-to-face assessment

Face-to face assessments started again in March 2021. But telephone appointments are still also happening. Once the DWP has received your form, you will be invited for an assessment with a healthcare professional. The DWP 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.

Don’t expect the assessor to be ‘on your side’. They are there to ask questions, not make sure you get PIP. The assessment will include what you do and say from the time you enter the room.

Take 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 difficult to get all your information across. Go through your form and make notes beforehand of the things you think will be most important to say. This 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.
Also Citizens Advice has a good PIP assessment helpsheet

Ask to make a recording
You can ask to make a recording of the face-to-face PIP assessment. You will need:

  • Your own recording equipment. This does not include mobile phone or laptop
  • To be able to create 2 identical copies
  • To be able to give one to the healthcare professional at the end of the assessment
  • To make your request well before the day of your assessment. You can do this by calling the Enquiry Centre on 0808 1788 114.

For more information visit the Capita website.

Video
In June 2018 the government decided to make legal the introduction of video recording the assessment. This is partly in response to the lack of trust voiced by so many people about Capita and Atos. These are the organisations which carry out PIP assessments. Video recording has been trialled in one centre. The DWP are now looking at how they might roll it out across the country. 

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:

Causes

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

Seizures

  • What happens to you before a seizure. If you get a warning or 'aura' before a tonic-clonic seizure, this warning is a specific type of seizure. 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 bowels 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

Recovery

  • 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

Medicines

  • 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 just answer yes or no. Try to give them full information about your situation.

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.

Take your time
Don’t let the examiner rush you. The way to get the fairest decision is to be able to get relevant information across to them.

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. They may also ask how you got to the interview.

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 their 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.

Getting a PIP award can make a real difference to how you manage financially. So it can be really upsetting to be told you are not entitled to PIP, especially if you have had this (or Disability Living Allowance) before. This can be especially true if the letter does not seem to reflect what you said in the assessment. Try to be prepared for this and for what you might want to do next. This can make the decision feel a little less difficult.

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 you are now entitled to other benefits, or that 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. Or if you lose PIP, if someone was getting carer’s allowance for you, they may no longer be entitled to it.

Epilepsy Action works hard to influence the government to make the assessment process fairer for people with epilepsy.

What can I do if I've been refused PIP?

If you’re not happy with the decision because you have scored no points or not as many as you feel you should have, you can ask the DWP to look at your case again. This is called a mandatory reconsideration. You have one calendar month from the date of your decision letter to request this.

Mandatory reconsideration

If you’re not sure whether to ask for mandatory reconsideration or what evidence to give, call the benefits office dealing with your claim. They’ll be able to explain the reason for your benefit decision and answer any questions.

You can still ask for mandatory reconsideration after you’ve spoken to your benefits office.

Once the DWP has made its decision about whether you are entitled to PIP, there are 3 aspects you could challenge. You may want to challenge the actual decision (if they have refused you PIP) or the rate or the length of time of the benefit award.

Bear in mind that if you are challenging the rate or length of time, the DWP will look at your whole claim again. This could result in you being awarded less than with the first decision.

You can also ask for a reconsideration if your condition worsens. But be aware your benefit could go down as well as up. It’s always good to get advice before you do this. One of the useful organisations listed below may be able to help you with this.

How to ask for a mandatory reconsideration

You have one month from the date on the decision letter to ask for a mandatory reconsideration. You can either:

  • Use the form CRMRI to ask for a mandatory reconsideration. You can complete it online and then print it out. There are notes to help you with this process or
  • Phone the number on the decision letter. It is a quicker process to make the phone call. When you speak to them you should:

Ask for a reconsideration of the decision and explain why you want it and
Ask for copies of any evidence they used to make their decision and
Ask them not to take any further action until you’ve had a chance to respond to their evidence

As well as the phone call, write them a letter asking for the evidence, and keep a copy. If you haven’t heard anything in 2 weeks, phone them again.

Once you have received the evidence you should have a better idea of why the decision was made and how to challenge it. For example, you might have said on the form that you need help with a certain task, but the healthcare professional who carried out the face-to-face interview disagrees. If possible, you could collect medical evidence to show that what you said on the form was correct, for example a letter from your healthcare professional confirming your difficulties.

Once you have gathered evidence to support your case, send it to the address on the decision letter. A case manager will look at the further evidence you send. They will then write back to you with their decision.

If the DWP don’t change their mind they will send you a mandatory reconsideration notice which proves that you have asked for a reconsideration. You will need this if you want to lodge an appeal.

If you still want to challenge the decision, you now have one calendar month from the date of the mandatory reconsideration notice to lodge an appeal to an independent tribunal.

Appeal success rate

According to the DWP’s own data, of the new PIP claims made where epilepsy was the main condition, 20 per cent (about one fifthtwere refused. These are numbers for claims during the 12 months of 2020. And out of the number of people who appealed these decisions, 36 per cent (about one third) were settled in favour of the claimant.

Appealing

This is a lengthy process and can be quite draining. But try not to be put off if you think the decision is wrong.

In order to appeal, you must have asked for a mandatory reconsideration first. You will have to download a copy of the official notice of appeal form SSCS1. You will need to submit your appeal to the Social Security and child Support Tribunal. Alternatively, you can phone your local HM Courts and Tribunals Service (HMCTS) and ask to be sent the appeal form. The Tribunal is part of the court system and not part of the DWP.

When you fill out the form, it will ask if you want your appeal to be decided with or without a hearing. Your chances of a successful appeal are much higher if you ask for a hearing and, if possible, you have someone to represent you.

If at all possible, get a welfare rights benefits worker to help you with your appeal. You may be able to find one from your nearest Citizens Advice or Welfare Rights Unit.
When you appeal, you may find it helps your case to mention the Upper Tribunal ruling described above. It would be a good idea to get advice on this from a benefits law advice service, such as the Disability Law Service. This is a free helpline service.

Your appeal will be reviewed by an independent tribunal made up of a judge, doctor and disability expert. They will consider everything you tell them and make a decision on your entitlement to the PIP benefit.

Hearings are informal, and you can take someone with you for support.

You will usually get the decision very soon afterwards.

For more information on appeals and reconsiderations see Disability Rights UK’s appeals and reconsiderations factsheet.

Epilepsy Action has a list of useful organisations for help with benefits

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.

Code: 
F120.13

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated July 2021
    To be reviewed April 2022

Comments: read the 9 comments or add yours

Comments

Chris's comments above are correct as it has also happened to me which I discovered through a phone call asking if I had sent back my form and the date it was done.

This needs to be raised and at the highest level because peoples claim forms should not be lost or otherwise especially on proof of posting. The mail handling centre is supposed to be secure.

The point being if a postman can be prosecuted for interferring with the mail why arn't these contractors and what's the DWP doing about it - apart from sending out new forms.

So when will you be updating your information because your readers and others should be made aware of this because it should not be happening.

Keep up the good work

Submitted by Tony

Hi Tony

Yes this is a concern. Our Campaigns team are continually monitoring this issue. Thank you for flagging this up.

 

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry - Epilep...

I had my PIP result today and lost the daily living component. I retained the mobility at the enhanced rate. If I ask for a mandatory reconsideration on the daily living and lose it will I lose my whole award if this were to happen I would rather not proceed as something is better than nothing and I dont have any more fight left for another year of this as I have ESA to prepare for in June as well so just all to much.

Submitted by Elizabeth Vidler

I would just like to say that I am 23 year old lad who suffers from epilepsy , I have real bad anxiety which causes me to take seizures. I have had many bad falls due it ,broken front tooth many cuts and bruises to the head and body , I've applied for pip before and was rejected then I apealed it and was also rejected so I feel now as to give up its causing me to much stress and anxiety and deppresion , to be honest its like waiting on a bus you know it coming but you just don't know when

Submitted by Paul Campbell
Hi Paul - we know that applying for PIP has been a tough experience for people with epilepsy.  And you must have gone through a lot during your application and appeal. 
 
We are campaigning to improve PIP and other benefits for people with epilepsy. We want people to tell their MP's about the problems they've had when applying for PIP. There's a link here to our PIP Pledge if you want to be involved.
 
If you'd like to talk through what happened with PIP you'd be welcome to call us at the Helpline. We could also talk through how living with epilepsy is for you at the moment. Our helpline number is 0808 800 5050 and its free to phone. We also have a new young person's website "The Epilepsy Space" that you might be interested in. 
 
Regards 
Mags
Epilepsy Action Helpline Team. 
Submitted by Mags - Epilepsy...

I suffer epilepsy my diagnosis it is the absent one so i have not such seizure but black outs I am on medication been for about 4/5 years now not sure what i am entitle if I am to anything

Submitted by Lourdes Prestamero
Hi 
Some people with epilepsy are entitled to PIP. It all depends on your individual circumstances.
The type of seizures you have isn't the main factor for receiving PIP. PIP is a benefit which helps with some of the extra costs caused by the affect your seizures have on your ability  to do normally daily living activities or with mobility. 
 
To find out what benefits you may be entitled too, you could use an online benefits checker like Turn2us.
 
If you do make a claim, it can be over whelming when you have to complete the forms. It appears people are more successful with their claim if they seek help with their application. For this reason, we have listed helpful organisations on the benefits section of our website.
 
If we can be of any more help, please feel free to contact us directly, either by email helpline@epilepsy.org.uk or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane
Epilepsy Action Helpline Team
Submitted by Diane - Epileps...

I have had epilepsy all my life, I'm now 51 and on a lot of medication daily, but I still have seizures, I have daily partial seizures and many daily absence seizures, and around 1 or 2 Grand mal monthly, I also have agoraphobia and anxiety and many panic attacks, I applied for pip a few years ago it was refused, I only scored 4 points, it went to court and I won getting enhanced care and the lower mobility, I'm now in the process of a review for my pip, I am so nervous that it will be stopped and I will have to go through it all again, the only one thing that has changed is now having daily partial seizures this is from a bad head injury I got through a seizure ,I had a fractured skull and bleed on the brain and fractured eye socket and fractured both cheek bones, since this i have daily partial seizures, I'm so worried that pip will still refuse me again causing many more panic attacks, I have done the form and got a letter saying they want to do a phone call assessment, they didn't believe that I have memory problems at the first assessment because I remembered one word out of 3 words, they won't wouldn't accept the side effects from medication either, I'm sorry for such a long comment I'm just so afraid of it all going bad again

Submitted by Diane Metcalf
Dear Diane
 
Thank you for  your message. It sounds like it's been a difficult time for you.
 
We know that applying for PIP can be a stressful experience for many people. Our PIP webpage has information about how to explain your epilepsy and tips for how to prepare for an assessment, which you might find helpful. 
 
It might be worth knowing that you can have someone with you to support you during your assessment if that's helpful to you. This could be a family member, friend or a professional support. 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 rememberYour local Citizens Advice might be able to help. 
 
I'm also linking you to our campaign to improve PIP for people with epilepsy in case this is of interest to  you. 

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. Our helpline is open Monday to Thursday 8.30am until 7.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Tove
Helpline Team

Submitted by Tove - Epilepsy...

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