Personal Independence Payment (PIP) and epilepsy
At a glance
Key points
- PIP can help to pay for extra help you may need with everyday activities due to your epilepsy
- You can claim PIP alongside other benefits, whether you are working or not
- The application process involves filling in a form, and an assessment with a health professional. This is so you can explain how your epilepsy affects you
- There are steps you can take if you’re not happy with the decision. There is support available to help you to appeal a decision
- Your friends, family or carers can support you through this process. They may be able to you to explain how your epilepsy affects you
- There are lots of organisations with specialist benefits advice and information. They can guide you through the process. Examples include Citizens Advice and Turn2us
Can I claim PIP?
You may be able to get PIP if you have a long-term physical or mental health condition, or disability. And, this condition causes difficulty doing everyday tasks or getting around. So, if you have epilepsy you might be able to claim PIP to help you.
You must have had the condition for at least 3 months and be expected to have it for 9 more months.
Find out more information about who can apply for PIP on the government website or Citizens Advice.
You can apply for Adult Disability Payment (ADP) if you live in Scotland. This was introduced to replace PIP. You can read more about the changeover on the Scottish Government’s website.
You can apply for Attendance Allowance if you’re older than state pension age.
How can I claim PIP?
The application process depends on where in the UK you live. This includes who you should contact:
- England and Wales: Visit the gov.uk website for more information on how to claim PIP
- Northern Ireland: Visit nidirect for more information on applying for the PIP NI scheme
Turn2us has a PIP Helper tool. This guides you through the application process and keeps track of your progress.
How does PIP work?
PIP is split into two parts. You can get either one or both parts depending on what you struggle with due to your epilepsy or other disabilities. There are 12 activities altogether. Payments for PIP can be at a standard or higher rate, depending on the level of help you need.
The two parts are:
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Daily living
You may get the daily living part of PIP if you need help with everyday tasks like:
- Preparing food
- Eating and drinking
- Managing your treatments
- Washing and bathing
- Managing toilet needs
- Dressing and undressing
- Talking, listening and understanding
- Reading
- Mixing with other people
- Managing your money
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Mobility
You may get the mobility part of PIP if you need help with:
- Planning and following journeys
- Physically moving around
You can find out how much money you could get:
England 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.
Murray's story
Murray explained why he applied for PIP payments for his epilepsy.
“I applied for PIP as my Epilepsy has never improved. I work full-time and there is a lot I can still do. I do need help with certain tasks and especially with travel. I want to work and the safest way to travel is a direct journey in a private vehicle.”
How is PIP assessed?
The first step of applying for PIP is completing a form about how your condition affects you. You will then usually have an assessment with a health professional.
1. Completing the form
Once you have told the benefits agency you want to claim PIP, they will send you a form. This form is a list of questions called ‘How your disability affects you’. They ask about how your epilepsy impacts your ability to do different everyday tasks.
You need to complete and return the form within one calendar month.
It might help to make a copy of your form once you have completed it. You can keep this as a record to help prepare for the assessment.
Citizens Advice has guidance on their website about how to complete the form. They explain in detail what information is useful for each question.
Answering the questions
Living with epilepsy can be different day to day. Some days might be more difficult than others. This can be tricky to describe in a form. You should include information on any other health conditions you have alongside your epilepsy.
Think about STAR when you fill in the form. For an activity, can you do it:
- S – Safely?
- T – In a timely manner?
- A – To an acceptable standard?
- R – Repeatedly?
Explain how you do an activity and how long it takes you to do it. Don’t just say whether you can do an activity. Also think about how you would feel for the rest of the day if you did that activity. Would you be able to repeat the activity if needed?
Pages 15-21 of the Disability Rights UK PIP factsheet can also help you to answer the questions.
The ‘50 per cent rule’
Epilepsy is a variable condition. How much difficulty you have might change day to day. The assessor will look at how your life is affected over a 12-month period. This is usually looking back at the past 3 months, and what’s likely to happen in the next 9 months.
You must meet the descriptor for an activity for at least half the number of days in this period. This is 50% of the time. The assessor will consider if there is a risk to your safety on the majority of days.
When assessing your 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
Help completing the form
There is a range of support and information available to help you fill out the form. This includes online information, helplines and local support.
You can find suggestions of organisations to help and support you below.
Supporting evidence
You’re encouraged to send copies of any supporting evidence you have. Gathering this information as soon as possible can help you to complete the form within the time limit.
Getting clear supporting evidence can make a difference to how successful your claim is. They can’t return any documents to you so make sure you only send copies. It’s also a good idea in case they get lost in the post.
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Examples of supporting evidence
- Prescription lists
- Care plans
- Seizure diaries
- Any workplace adjustments you have
- A diary to record each activity that the PIP assessment looks at. Disability Rights UK have a template in Appendix D of their PIP guide
- Reports from healthcare professionals, such as your GP, specialist or epilepsy specialist nurse
- A letter from someone who helps you and knows about your difficulties. This could be your social worker or carer, or a relative or friend
- Contact details of anyone involved in your care. It’s recommended to list these in order of who knows you best
2. The assessment
You will usually need to have an assessment as part of your PIP claim. This will be arranged after the benefits agency has received your form. It will usually be held over the phone, by video call or face-to-face.
They will ask you questions to see how your condition affects your day-to-day life. The questions will assess how you cope with the 12 activities listed above. They will score different points for each activity based on how you answer the questions. Citizen’s Advice explain how this system works.
Turn2us also has more information about how the assessment works and how to prepare.
The healthcare professional might only have a basic understanding of epilepsy. Epilepsy is also different for everyone. Make sure you can explain clearly about your epilepsy and how it affects you.
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Helpful tips for your assessment
- Prepare before your assessment. Explaining your epilepsy and the Citizens Advice website can help you plan
- Take a copy of your completed form with you
- It may help to bring someone with you. They may be able to help explain what happens to you during a seizure. Although the health professional will mostly want to hear from you
- You can ask to audio record your assessment. This might be helpful if you need to challenge the decision. You should ask for this at the beginning of the assessment or call when you get your appointment letter
- Try to explain your difficulties as fully as you can. Don’t just answer yes or no if there’s more you can say. Remember to think about STAR
- Be honest about how difficult things can be on a bad day. It’s important that an assessor fully understands so you can get the financial support you need. You don’t need to try and be positive for them
- Take your time and don’t let anyone rush you
- You can take breaks if you need. Just let the assessor know
Explaining about your epilepsy
You will need to explain how your epilepsy affects your life in the form and in the assessment.
The assessors need to know about all the possible ways that epilepsy can affect your life. Try to think how your epilepsy impacts you doing the 12 activities that PIP assesses
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 things that it might help to think about and explain:
Cause
- If there is a particular cause for your epilepsy. For example a brain tumour, brain damage or genetics
Seizures
- What happens to you before a seizure. Whether you get a warning or ‘aura’ before a seizure
- How well your seizures are controlled
- Is there a pattern to your seizures or could they happen at any time
- What happens to you during a seizure. Our information about different seizure types might help you to explain your seizures
- If you lose control of your bladder or bowels and how often this happens. As well as any anxiety that this may cause
- How likely it is that you would come to harm if you had a seizure. Or, if you could harm someone else
- What your seizure triggers are. Explain if it’s possible to avoid them or not
Recovery
- What your seizure recovery is like. For example, whether you need to go to sleep or if your awareness is affected
- How much help you need after a seizure
- How long it takes you to recover from a seizure and how this impacts the rest of you day
- Whether you have had to go to hospital because of a seizure
- If 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. Do they cause memory loss or confusion? You could check the BNF for the possible side effects of your epilepsy medicines
- If you need reminding to take your medicines either by an alarm, person or dosette box
- If you’ve ever forgotten to take your medicines and the risks that this caused
Other issues
- Any support you are given. This could be from a partner, family, friend or carer
- Whether your memory or concentration is affected
- How living with epilepsy affects your mental health
- Any risks to you at home because of your epilepsy. Tell them about any tools you use to eat or drink
- How you travel to places like work, school or the shops. Explain any difficulties or help that you have
- Any support from your family, friends or carers. For example, if they drive you to appointments or help to cook meals
- Any other impact your epilepsy may have on your life
- Any relevant information about other health conditions
Examples
Uncontrolled seizures
There is always the risk of having a seizure for people with uncontrolled seizures. The level of harm you could come to depends on the activity, the type of seizures you have and how unpredictable they are. You may still need help due to the risk of having a seizure, even if you don’t have them very often.
Sleep seizures
Think about if any of these points might be relevant for you:
- Any effects of sleep seizures continuing into the following day
- If your memory is affected
- If you are having problems with side effects of your epilepsy medicine
The decision
The assessor will send a report to a decision maker. They will decide if you can receive PIP as well as how much money you will get and for how long.
You will be sent a letter with their decision and and an explanation of how the decision was made.
You can request a copy of the report one week after your assessment. You won’t be sent the report unless you ask for it. Scope has more information on this and how to understand the report.
Your needs will be regularly reviewed to make sure you’re getting the right support. You need to tell the benefits agency straight away if there’s any change in how your condition affects you.
Getting PIP may mean you are now entitled to other benefits, or that your other benefits increase. Citizens Advice has more information on the extra money and help you could get, and how to apply.
“Just because you are turned down the first time, it doesn’t mean you can’t get the help you deserve. There is nothing to lose and everything to gain to try and give you a more stable and comfortable life. This could, in turn, affect your seizure activity.”
– Murray
Challenging a PIP decision
It can be upsetting to be told you are not entitled to PIP, especially if you have had this before.
If you disagree with the decision, you can ask the benefits agency to look at your case again. This is called a mandatory reconsideration. You can then appeal if this is refused.
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Mandatory reconsideration
There are 3 things you could challenge if you don’t agree with the decision made:
- The decision, if you were refused PIP
- The rate of pay if it’s less than you expected
- The length of time it will be awarded for
You have 1 month to request a reconsideration from the date on your decision letter.
You can apply for a mandatory reconsideration by completing the request form on gov.uk. Or, visit nidirect’s website if you live in Northern Ireland.
Advicenow has an online tool to help you write a mandatory reconsideration letter.
Advice and support
Citizens Advice has more detailed information and advice about applying for mandatory consideration. This includes advice about what to say in your form or letter. You can also contact their advisors if you need more help.
You can use Advicelocal to find other places for advice locally to you.
Government websites also have more information on mandatory reconsiderations:
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Appealing
The benefits agency will send you a mandatory reconsideration notice if they don’t change their mind.
You can then appeal this decision. But you must have asked for a mandatory reconsideration first.
The appeals process can be long and draining. But a lot of appeals are successful. 69 out of 100 people who go through the appeals process have a decision made in their favour. There is also support available to help you.
You have one calendar month from the date of the mandatory reconsideration notice to submit an appeal.
Citizen’s Advice and Disability Rights UK have more information about the appeals process. This includes:
- How to complete the form
- Advice to explain why you’re appealing
- Information about organising your appeal
- Preparing for the hearing and what to expect
You can also get support and advice from other organisations. We have a list of suggestions below. You may want a solicitor to act as your representative.
If you lose your appeal
You can appeal to a higher level of tribunal if you think that your tribunal made a mistake in law. You wouldn’t be able to appeal to this level if you disagreed with the result for another reason.
You should get advice about whether you might be able to appeal again. You can find a local advisor on Advicelocal’s website.
Getting advice and support
These organisations can help you with different stages of the PIP process:
Advicelocal – Helps you to find local organisations across the UK that can offer advice and support with benefits claims.
Citizens Advice – Guides you through the PIP process on their web pages. They offer advice over the phone, online and locally in person.
Disability Rights UK – Includes a downloadable guide to making a claim through PIP.
Disability Law Service – Provides advice by phone, email and writing about the different stages of PIP application.
Government websites – Information about how to apply for PIP is available for England and Wales, Northern Ireland, and Scotland.
Scope – Has information to guide you through the PIP process
Turn2us – The PIP Helper tool takes you step by step through the application process. It provides tips, local support and resources. You can make an account to keep track of your progress.
Got any questions?
Our helpline team can help you with any questions you might have about benefits or anything else related to living with epilepsy. can help you with any questions you might have about benefits or anything else related to living with epilepsy.
