Employment and Support Allowance (ESA) and epilepsy

This information applies to England, Scotland and Wales.
For information on claiming Employment and Support Allowance in Northern Ireland, go to the NI Direct website.

What is Employment and Support Allowance (ESA)?

ESA is a benefit for people who have an illness or disability that affects how much you can work.
ESA gives you:

  • money to help with living costs if you’re unable to work
  • support to get back into work if you’re able to

Can I claim ESA?

You may be able to get ESA if your epilepsy (or another illness or health condition) affects your ability to work.

You may also be able to get ESA if you were unable to work while self-isolating or ‘shielding’ because of coronavirus (COVID-19).

You can get ESA whether you are employed, unemployed, self-employed or a student. You have to be under state pension age. There are some conditions to working while claiming ESA.

There are 2 old types of ESA, which some people are still getting. They’re called ‘income-based ESA’ and ‘contribution-based ESA’. Income-based ESA is a payment based on what you have earned previously. Contribution-based ESA is a payment based on your National Insurance contributions. If you’re already getting contribution-based ESA, you might be able to add income-based ESA to it. This could mean you’ll get more money.

You can't make a new claim for contribution-based ESA or income-related ESA.

Citizens Advice has more information on these different types of claims.

New style ESA:

You can apply for ‘new style’ Employment and Support Allowance (ESA) if you’re under State Pension age and you have a disability or health condition that affects how much you can work. You may be able to get Universal Credit instead of or as well as new style ESA. You’ll get new style ESA if you’ve made enough National Insurance Contributions.
You cannot claim ESA if you are getting statutory sick pay or severe disability premium. Your and your partner’s income and savings do not affect this. Statutory sick pay is money you get from your employer if you’re too ill to work.

If you are entitled to a disability premium it should automatically be added to your claim. But it will be worth your while checking both your entitlement and the link between ESA and premiums. The gov.uk website has information on this.

More information on ESA and shielding or self-isolating during the coronavirus pandemic (COVID-19).

What will I get?

How much you get will depend on what stage of your claim you are at, as well as your age and whether you’re able to get back to work.
You’ll normally get the assessment rate for 13 weeks while your claim is being assessed. This is currently:

  • Up to £59.20 a week if you’re aged under 25
  • Up £74 .70 a week if you’re aged 25 or over

After that, if you’re entitled to ESA, you’ll be placed in one of two groups and will get:

  • Up to £74.70 a week if you’re in the work-related activity group
  • Up to £ 114.10 a week if you’re in the support group

You can usually work up to 16 hours a week and earn up to £140. You can work more than 16 hours if it is voluntary or “supported permitted work”.

You may also be able to get Universal Credit. This could help with housing or childcare costs.

The Department for Work and Pensions (DWP) aims to complete your assessment within 13 weeks. Even if your assessment takes longer to happen, your ESA payment will still be backdated to the 14th week of your claim.

These figures were correct in April 2021.

How do I claim ESA?

If you’re already getting Universal Credit, you can claim ESA through your Universal Credit account.

If you’re not already getting Universal Credit, for ‘new style’ ESA claims apply online. If this isn’t possible call the Universal Credit line on 0800 328 5644 and choose Option 3.

What happens once I’ve made a claim?

There are several stages to the ESA claim process.

The assessment phase

Once you have made a claim for ESA, you will be paid the assessment rate while your claim is assessed.

DWP will contact you within 10 days to tell you whether or not you are eligible to apply for ESA. If you are eligible. they will make you a phone appointment with a work coach.

Capability for work questionnaire

During the assessment phase, you will usually be sent a capability for work questionnaire (form ESA50) which asks more detailed questions about your health and ability. If you are sent one, you need to fill it in and return it within 4 weeks. You return it to the Health Assessment Advisory Service. The address to use is on the form.

You can find a guide to filling in the ESA50 form on the Citizens Advice website. This includes some information on what to do if you have a condition such as epilepsy which changes day to day.

If you need help filling in the form, you can ask a friend, relative, carer or representative such as a support worker to help you.

Work Capability Assessment

At the moment these assessments are happening over the phone because of coronavirus. The information below is what will happen once it is possible to meet face-to-face again.

The work capability assessment is a face-to-face assessment with a healthcare professional. It is carried out by the Health Assessment Advisory Service, usually at one of their centres. If you have to travel to the assessment, you can claim travel expenses. If your disability makes it difficult or impossible to travel to the assessment, you can ask for the assessor to come to your home instead.

If you’re claiming ‘new style’ ESA and Universal Credit you’ll only need one assessment.

You can find the answers to frequently asked questions about the ESA assessment on the Health Assessment Advisory Service website.

How will I be assessed?

The assessment is to find out if your illness or disability affects how much you can work You will be asked about your physical and mental abilities. These are divided into ‘activities’ and ‘descriptors’. During the assessment the healthcare professional will be looking at which descriptors best describe your situation.

A number of these activities could be difficult or impossible if you were having a seizure. They may also be difficult because of memory problems or side-effects of your medicine. If you are feeling depressed this may also influence how possible it would be to do the activities.

It’s not always easy to work out how to get across information about your epilepsy. It will be useful to be familiar with the activities and their descriptors before you go. This will help you plan the information you need to get across. You can find information about the descriptors on the Disability Rights UK website.

If you score 15 points or more you will be awarded ESA. If you don’t score enough points you’ll need to claim Jobseeker’s Allowance or Universal Credit instead. This is unless you meet one of the exceptional circumstances.

Exceptional circumstances

Even if the decision maker thinks you haven’t passed the limited capability for work assessment, there is one other way you may pass it. This is if you have information from a healthcare professional which says that one of two exceptional circumstances apply to you.

The first exceptional circumstance is about having a life-threatening illness.

If you have been told you are at particular risk of sudden unexpected death in epilepsy (SUDEP), this may apply to you.

The second exceptional circumstance is about the level of risk there may be to you or people around you if you were to be in a work environment. See the Disability Rights UK website for the full text. The full text:

You would need a letter from your specialist explaining this. Send it either with your questionnaire or at any point in the assessment process.

If you are entitled to ESA you will be put into one of 2 groups:

  • The support group – you get a higher rate of ESA and are not expected to look for work. But if you are still interested in working, mention this to an adviser. You’re usually in this group if your illness or disability severely limits what you can do. You get more money in this group than the work-related group. This claim will be on-going rather than stopping after a year
  • The work-related activity group – you get a lower rate of ESA and are expected to start doing things to help you return to work, including attending work-focused interviews. You get less money in this group than in the support group. And you only get this money for one year. Any activities you are asked to do should be manageable for you. It may be necessary for the DWP to make reasonable adjustments to any work-related activities you are asked to do.

‘New style’ and contribution-based ESA last for 365 days if you’re in the work-related activity group.

There’s no time limit if you’re in the support group or if you’re getting income-related ESA.

How should I approach the ESA assessment?

A lot of people understandably get anxious about the ESA assessment. Here are some tips to help you feel as prepared as possible.

Make notes beforehand

Make notes beforehand of the things you think will be most important to say. This can really help once you are in the assessment. Here is a list of the sorts of things that a person with epilepsy may need to mention. You can use this list to make notes about your situation.

  • If there is a particular cause for your epilepsy – for example a brain tumour
  • What happens to you during a seizure
  • How often you have a seizure
  • How often you lose control of your bladder or bowel
  • What your seizure recovery is like – for example whether you need to go to sleep, or if your awareness is affected and how long it takes you to recover
  • 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
  • What the side-effects of your medicines are for you
  • Whether your memory and/or concentration are affected
  • If you have worked in the past, how your epilepsy affected your ability to do the job, and how working affected your epilepsy
  • Any other impact your epilepsy may have on your life
  • Any relevant information about other health conditions

Take someone with you

As with any important meeting, it can really help to take someone with you. Ideally this will be someone who can help you feel as relaxed as possible. And someone who could remind you to look at your notes if there are things you don’t remember. They could also take notes during the meeting as a record of what was said.

Ask for a recording

You can ask for the ESA assessment to be recorded, by calling the Health Assessment Advisory Service on 0800 288 8777. You don’t have a legal right to a recording, but they should consider your request. You should make the request as far in advance as possible.

For more information on recording see the Health Assessment Advisory Service website.

Once you have been assessed you will either be put in the work-related activity group or the support group.

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

Once the ESA assessment is complete, the assessor will send a report to the Department for Work and Pensions (DWP). The DWP makes the final decision about whether you are entitled to ESA, and if so which group you will be put in. They will send you a letter letting you know the decision. If you haven’t heard from the DWP after 8 weeks, contact them to ask why.

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 month from the date of your decision letter to request this.

You might be unhappy because you’ve been refused ESA or because you feel you’ve been put in the wrong group.

If the DWP looks at your case again, and you are still unhappy with the decision, you can appeal. For more information on appeals and reconsiderations see the appeals and reconsiderations factsheet on the Disability Rights UK website. You should get advice about appealing. There is a good chance you may win, especially if you can get help.

Reapplying

The ‘new style’ and contribution-based ESA lasts for 365 days. It may be possible to reapply after 12 weeks if you have enough National Insurance contributions. There is no time limit for your award if you’re in the support group and your ESA is income-related. 

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: 
F142.07

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

  • Updated July 2021
    To be reviewed April 2022

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