If you would like to talk to someone about epilepsy, our trained advisers are here to help.
At a glance
Can I get PIP?
You may be able to get PIP if all of the following things apply:
- You’re aged between 16 and state pension age
- You have a long-term physical or mental health condition or disability (this includes epilepsy)
- You have difficulty doing certain everyday tasks or getting around
- You’ve had the difficulties for 3 months and expect them to last for at least another 9 months
PIP is currently available in all parts of the UK. But it is being phased out in Scotland during 2022. Depending on where in Scotland you live and when you apply, you may need to claim a new benefit called Adult Disability Payment instead.
How does PIP work?
There are two parts to PIP:
1. A daily living part
You may get the daily living part of PIP if you need help with everyday tasks 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
2. A mobility part
You may get the mobility part of PIP if you need help with:
- Planning and following journeys
- Physically moving around
- Leaving your home
Payments for PIP can be at a standard or enhanced rate, depending on the level of help you need.
Find out more:
England, Scotland and Wales: Visit the gov.uk website to check the current PIP payment rates, and see how much you could get.
Northern Ireland: nidirect has more information about payment rates for the PIP NI scheme.
How can I claim PIP?
You can start a new PIP claim by calling or writing to the benefits agency. Someone can call for you, but you need to be with them when they call. If you decide to start your claim by post, bear in mind that this can delay the decision.
Who you’ll need to contact, depends on where in UK you live:
How is the PIP assessment made?
Completing the form
Once you have told the benefits agency 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.
Answering the questions
It can be hard to complete this form if you have a variable condition like 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 .
But, this doesn’t mean that you have to experience seizures 50 per cent of the time. In March 2017, an Upper Tribunal ruling set out , when assessing a person’s ability to carry out an activity safely, PIP assessors must consider:
- How likely it is that you would come to harm
- How serious that harm could be
For people with uncontrolled epilepsy, there is always the risk of having a seizure. The level of harm you could come to depends on the activity, the type of seizures you have and how unpredictable they are. The key thing to remember is that you may still need help due of the risk of having a seizure, even if you only have them occasionally.
If you have sleep seizures, you may still be able to get PIP. 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
- Your memory is affected
- You are having problems with side effects of your epilepsy medicine
For more advice about how to answer the questions on the PIP form, and how to describe how your condition affects you, see pages 15-21 of the Disability Rights UK PIP factsheet.
Make sure you also include information on any other health conditions you have alongside your epilepsy. Describe how they affect your daily living and your mobility.
As well as completing the form, you’re encouraged 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, such as your GP, consultant or epilepsy specialist nurse
- 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
The Department for Work and Pensions has said there are some things which it is not useful to send as supporting evidence:
- Appointment letters or cards
- General information or factsheets about your condition or medicine
- Information about tests you’re going to have
You can find more information about keeping a diary to support your claim in Appendix D of the Disability Rights UK PIP fact sheet.
Help completing the form
If possible, make an appointment with a welfare rights service 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.
The medical assessment
You’ll usually need to have an assessment as part of your PIP claim. Your assessment may be held over the phone, via video call or at a face-to-face appointment.
Once the benefits agency has received your form, you will be invited for the assessment with a healthcare professional. You should be given at least 7 days’ notice of an assessment. If you have to go to a face-to-face assessment at an assessment centre, you can claim travel expenses.
The benefits agency may also contact your doctor, consultant or other healthcare professionals treating you, for more information before your assessment. Citizens Advice say it’s a good idea to ask for an appointment with your healthcare team, before you apply, so they’re up-to-date with how your condition affects you day-to-day.
You may find it helpful to take someone with you to the appointment to support you. And it might be a good idea to make notes of what you want to say beforehand, especially if your epilepsy means you have problems remembering things. You can also request or make an audio recording of the assessment, in case you are refused PIP and decide to appeal.
Citizen’s advice have more information on preparing for your PIP assessment.
Explaining about your epilepsy
The assessment 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 assessment. If you have a seizure diary, you could take this to the assessment 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 assessment:
- If there is a particular cause for your epilepsy – for example a brain tumour, brain damage or genetics
- 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 called a focal aware 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 this 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
- 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 – don’t just answer yes or no if there’s more you can say
- 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
- Explain 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
- 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 can be 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.
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 healthcare professional who carried out your assessment will send a report to a case manager, who will 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 think about what you might want to do next. It can really help to have a plan.
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 benefits agency 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 benefits advisor or welfare rights worker.
What can I do if I’ve been refused PIP?
If you’re not happy with the decision, you can ask the benefits agency 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.
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 a decision has been made about whether you are entitled to PIP, there are 3 things you could challenge. You may want to challenge the actual decision (if they have refused you PIP), the rate of the payments you’ve been granted, or the length of time of the benefit award.
Bear in mind that if you are challenging the rate or length of time, the benefits agency 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.
Find out more:
England, Scotland and Wales: the gov.uk website has more information on challenging a benefits decision.
Northern Ireland: nidirect has more information on mandatory reconsideration.
If the benefits agency don’t change their mind, they will send you a mandatory reconsideration notice confirming this. In order to appeal, you must have asked for a mandatory reconsideration first.
If you still want to challenge the decision, you have one calendar month from the date of the mandatory reconsideration notice to lodge an appeal to an independent tribunal.
When you fill out the appeal form, it will ask if you want your appeal to be decided with or without a hearing. Your chances of a successful appeal are higher if you ask for a hearing.
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.
Appeal success rate
According to the DWP’s own data, 67% of appeals were successful. This means the original decision was changed in favour of the person making the claim.
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