If you would like to talk to someone about epilepsy, our trained advisers are here to help.
At a glance
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 and support to get back into work if you’re able to.
This page looks at the criteria for getting ESA, the application process and how to explain your epilepsy. It also explains what you can do if you are refused ESA and disagree with the decision.
Can I get ESA and how to claim
You may be able to get ESA if the following things apply:
- You’re aged between 16 and state pension age
- Your epilepsy (or another illness or health condition) affects your ability to work. This is also known as ‘limited capacity for work’
- You’ve made enough National Insurance Contributions
You can apply whether you’re in or out of work. There are conditions to working while claiming ESA.
You cannot claim ESA at the same time as you are getting Jobseekers Allowance or statutory sick pay. You can apply up to 3 months before statutory sick pay ends. 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’s worth checking both your entitlement and the link between ESA and premiums. The gov.uk website has more information about disability premiums.
Different types of ESA
The type of ESA that most people can claim is called ‘new style’ ESA. You may be able to get Universal Credit instead of or as well as ‘new style’ ESA.
There are also 2 old types of ESA, which some people are still getting. They’re called ‘income-based ESA’ and ‘contribution-based ESA’. You can’t make a new claim for either of these.
Find out more:
England, Scotland and Wales: Citizens Advice has more information on these different types of ESA.
Northern Ireland: nidirect has more information different types of ESA.
The Gov.uk website also has easy read guides to new style ESA
How can I claim ESA?
England, Scotland and Wales: apply online through the gov.uk website. If you can’t apply online, or if you are an appointee, you can apply by phone through the Jobcentre Plus new claims helpline on 0800 055 6688.
Northern Ireland: visit the indirect website to find out information about how to apply for ESA.
You will need to show that your medical condition makes it difficult to work. This is called ‘limited capability for work’. If you haven’t already, ask your GP or the doctor who’s treating you for proof that you’ve got limited capability for work. This is called a ‘fit note’.
How does ‘new style’ ESA work?
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 usually get a lower amount for 13 weeks while your claim is being assessed.
If you’re assessed as being entitled to ESA, you’ll be placed in one of two groups:
- The work-related activity group
- The support group
You can usually work up to 16 hours a week and earn up to a certain amount. You can work more than 16 hours if it is voluntary or “supported permitted work”
Find out more:
England, Scotland and Wales: visit the gov.uk website to check the current ESA rates
Northern Ireland: visit the nidirect website to check the current ESA rates
How is the ESA assessment made?
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 to tell you whether or not you are eligible to apply for ESA. If you are eligible, you might be asked to have a telephone or face to face interview at the Jobcentre Plus.
NI Direct have more information about the assessment process for ESA if you live in Northern Ireland.
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 to work. If you are sent one, you need to fill it in and return it within 4 weeks.
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.
It can be helpful to keep a copy of your Capability for Work questionnaire as you may be asked about your answers at your work capacity assessment.
If you need help filling in the form, make an appointment with a benefits adviser if you can.
Epilepsy Action has information about organisations that can help with benefits.
Work Capability Assessment
The Work Capability Assessment is a phone, video or face-to-face assessment with a healthcare professional. It is carried out by the Health Assessment Advisory Service on behalf of the Department of Work and Pensions (DWP). If your assessment is by phone or video call, you can have someone else with you, for example a friend or support worker.
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, contact the Health Assessment Advisory Service on 0800 288 8777 for advice.
Citizens Advice have more information about preparing for your ESA medical assessment.
How will I be assessed?
The assessment is to find out if your health condition, illness or disability affects how much you can work.
You’ll 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.
It’s not always easy to work out how to explain 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.
Automatic limited capacity for work
There are some circumstances where you can automatically be treated as having limited capacity for work. This might apply to you if:
- You have been told you are at particular risk of sudden unexpected death in epilepsy (SUDEP)
- Your epilepsy could be a substantial mental or physical health risk to you or people around you if you were to be in a work environment
The Disability Rights UK website has more information about automatic limited capacity for work.
Explaining about your epilepsy
The assessment will be with a health care 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. The assessor needs to know about the impact of epilepsy on your life and ability to work, not just about how many seizures you have.
You could use the list below to make notes about your situation. You can take the notes with you to the assessment. If you have a seizure diary, you could take this to the assessment to help you explain about your seizure patterns.
Citizens Advice have more information about preparing for your ESA medical assessment.
Here is a list of the sort of things you could mention:
- If there is a particular cause for your epilepsy – for example, a brain tumour
- What happens to you before, or 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 and what harm you might come to if you had a seizure
- Do you have any particular triggers for your seizures
- 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 emergency medicine has been given to you by a carer or health professional after a seizure
- Any side effects you get from your epilepsy medicines
- Any support you are given by a partner or carer
- Whether and how 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 – for example, if you experience anxiety or other mental health problems with your epilepsy
- Any relevant information about other health conditions
Answering the questions:
- 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
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 is said.
The Health Assessment Advisory Service have more information about taking someone with you.
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.
The Health Assessment Advisory Service have more information about audio recordings.
What happens next?
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. You will keep getting ESA and won’t have any further assessments.
- 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 regular interviews with a work coach. You get less money in this group than in the support group. 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. The DWP will reassess you again between 6 months and 2 years after the decision.
‘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.
Citizen’s Advice have more information about time periods for ESA.
What can I do if I’ve been refused ESA?
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 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. If 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.
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 about appealing a benefits decision.
Epilepsy Action has more information about benefits you might be entitled to if you have epilepsy.
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