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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 have not yet been introduced in Northern Ireland.  

If you are looking for information about benefits in another country, please contact your local epilepsy organisation.

What is Personal Independence Payment (PIP)?

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.

What will I get?

You could get between £21.80 and £139.75 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 1 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: £55.10
Enhanced: £82.30

Mobility component weekly rate
Standard: £21.80
Enhanced: £57.45

These amounts were correct in January 2016. You can get up-to-date information on PIP on the government website: gov.uk/pip

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 eight 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 per cent 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: gov.uk/pip/eligibility

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.

Epilepsy Action has more information about DLA and 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 government’s online PIP checker: gov.uk/pip-checker

How do I claim PIP?

View a diagram showing the claim process

 

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

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 write to the address below asking for a form to send the above information by post. Bear in mind this can delay the decision on your claim.

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 gov.uk/pip/how-to-claim

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.

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.

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]. This will link to section below.

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. 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.

Returning the form

You need to return the form within 1 calendar month of receiving it. Always keep at least one copy of it.

The PIP assessment

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.

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
  • What happens to you during a seizure
  • How often you lose control of your bladder or bowel and any anxiety that may cause
  • 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 support you are given by a partner or carer
  • Any side-effects you get from your medicines
  • 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 Personal Independence Payments (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.

What can I do if I'm not happy with the decision?

If you’re not happy with the decision you can ask the DWP to look at your case again. This is called a mandatory reconsideration. You have one calendar from the date of your decision letter to request this.

Mandatory reconsideration

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 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.

How to ask for a mandatory reconsideration

To ask for a mandatory reconsideration, ring the number on the decision letter. When you speak to them you should:

  • Ask for a reconsideration of the decision and explain why you want it
  • Ask for copies of any evidence they used to make their decision
  • 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 requesting the evidence, and keep a copy. If you haven’t heard anything in 2 weeks, ring 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 doctor 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 1 calendar month from the date of the mandatory reconsideration notice to lodge an appeal to an independent tribunal.

Appealing

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. Alternatively, you can phone your local HM Courts and Tribunals Service (HMCTS) and ask to be sent the appeal form.

HMCTS website: courttribunalfinder

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 benefits worker to help you with your appeal. You may be able to find one from your nearest Citizens Advice Bureau or Welfare Rights Unit.

Your appeal will be heard by an independent appeal tribunal. Tribunals 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.

Where can I get help with benefits?

Advicenow
Website with information to help if you have not got the PIP decision you wanted. Includes a tool to help you write a mandatory request letter, and a guide to appealing a PIP decision.
Website: advicenow.org.uk/pip-tool and advicenow.org.uk/guides/how-win-pip-appeal

C-App
Free online tool to help you prepare for your PIP assessment. The tool allows you to practice answering the sort of questions you’ll be asked in the assessment.
Website: c-app.org.uk/

Turn2us
Provides a free online benefits calculator and grants search tool to help you find out what financial help you are entitled to.
Website: turn2us.org.uk/

Citizens Advice
Gives advice about your rights, including benefits. Advice provided by phone, online and face-to-face. They can also help you fill out claim forms for benefits.
Website: citizensadvice.org.uk
Find your local Citizens Advice
Telephone advice in England: 03444 111 444
Telephone advice in Wales: 03444 77 20 20

DIAL UK
Disability Information and Advice Line services, run by and for disabled people. They may be able to refer you to someone who can help you fill out claim forms for benefits (provided there is someone in your area).
Helpline: 0808 800 3333 (to find your local group)
Website: scope.org.uk/dial

GOV.UK
This website has lots of information about all the different benefits that are available.
Website: gov.uk/browse/benefits

Disability Rights UK
This website has a number of free factsheets you can download.  It offers basic information about benefits, tax credits, social care and other disability-related issues for claimants and advisers.
Website: disabilityrightsuk.org

Welfare Rights Unit
Welfare Rights Units 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. To find your local council visit gov.uk/find-your-local-council

NI DIRECT.GOV.UK
This website has lots of information about the benefits that are available in Northern Ireland.
Website: nidirect.gov.uk

Advice NI
Offers information, advice, advocacy and representation for people in Northern Ireland.
Helpline: 0800 988 2377
Website: adviceni.net

Code: 
F120.03

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

  • Updated January 2016
    To be reviewed January 2017

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