Employment and Support Allowance (ESA) and epilepsy
At a glance
Key points
- Having epilepsy can sometimes make it difficult to work. ESA can help with living costs if you’re unable to work
- There are organisations with information and advice if you’re applying for ESA
- The assessment process involves filling out a form and having an assessment
- You should explain the ways epilepsy affects your life in as much detail as you can. We have suggestions to help you to explain your epilepsy on this page
- There are steps you can take if you disagree with the decision made about your application
- Organisations with specialist benefits advice can help you to apply for ESA. For example, Citizens Advice
- Our work page has information that can support you getting back into work
- We have information about other benefits you can claim on our benefits webpage
Can I claim ESA?
You may be able to get ESA if the following things apply:
- You’re aged between 16 and state pension age
- Your epilepsy or other 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 for ESA if you’re in work or self-employed. Gov.uk explains the rules for working while you are claiming ESA.
You can apply if you’re now unemployed, but you have been employed recently. In order to claim ESA, you must have paid a certain amount of National Insurance in the past two to three years. You can’t claim ESA at the same time as you are getting Jobseeker’s Allowance.
You might be receiving statutory sick pay if you’re too ill to work. You can only claim ESA after your statutory sick pay ends. But you can apply for ESA up to 3 months before this end date. It’s good to start your claim early so your payments can start as soon as possible.
You can find more information on Disability Rights UK’s website.
How to claim ESA
The type of ESA that most people can claim is called New Style ESA.
There are 2 older types of ESA, which some people are still getting. They’re called ‘income-related ESA’ and ‘contribution-related ESA’. You can’t make a new claim for either of these. Some people claiming ‘income-related ESA’ are being moved over to Universal Credit. You can find information about this on the Citizens Advice website.
There are organisations that specialise in offering support and advice to people applying for ESA. They explain in detail what ESA is, how the application process works, and how much money you can claim:
- Turn2us
- England, Scotland and Wales: Citizens Advice
- Northern Ireland: nidirect
- The gov.uk website has easy read guides to New Style ESA
For more information and to apply:
England, Scotland and Wales: Apply online through the gov.uk website. You can apply by phone through the Jobcentre Plus new claims helpline on 0800 055 6688.
Northern Ireland: Visit the nidirect website to apply online. Or, you can call 0800 085 6318
How is ESA assessed?
The assessment for ESA is made by:
1. Completing a Capability for Work questionnaire
You can find a guide to filling in this form on the Citizens Advice website. Epilepsy can change day to day, which can be tricky to explain in a form. This page has advice to help explain your condition.
It can be helpful to keep a copy of your form. It is also called an EC50 form. You may be asked about your answers at your work capacity assessment.
You can make an appointment with a benefits adviser if you need help filling in the form. Epilepsy Action has information about organisations that can help with benefits.
2. An assessment with a healthcare professional
You will usually need a medical assessment after you’ve completed the form. This is your opportunity to explain how your condition affects you in more detail.
You’ll be sent a letter to tell you the details of the appointment. The assessment will be by phone, video or face-to-face. You can bring someone with you to the assessment. This could be a family member, friend, or support worker.
You might not be able to travel to an assessment because of your condition. You can find your local health assessment provider and how to contact them on the gov.uk website.
The Disability Rights UK website explains how the assessment works. It lists the different activities and criteria that will be assessed.
It can be difficult to explain your epilepsy. It’s useful to be familiar with the activities and their descriptions before you go. This will help you plan the information you need to get across.
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Questions you might be asked at the medical assessment
The assessor will ask questions to understand how well you can do the assessment activities. Here are some examples of questions that they might ask you:
- “How did you get to the assessment centre?”
You might tell them you came on the bus. They will note that you can travel alone on public transport.
When answering this question, you could explain how you felt about travelling and any anxiety it caused.
- “Do you go shopping in a supermarket?”
Explain if you need help doing this. They might assume you can walk around the supermarket by yourself
- “How long have you been sitting in the waiting room?”
If you tell them half an hour, they will note that you can sit in an ordinary chair for 30 minutes. You should explain if you had any difficulties doing this.
The section below can help you to explain your epilepsy and answer the questions.
For more information about the medical assessment and how to prepare:
England, Scotland and Wales: Citizens Advice
Northern Ireland: nidirect
Explaining your epilepsy for ESA
It is important to explain clearly about your epilepsy and how it affects you on a daily basis. The assessor needs to know about the impact of epilepsy on your life and how it affects your ability to work.
You can use the list below to make notes about how epilepsy affects your daily life.
It may help to keep a seizure diary or care plan. This could help you to talk about the following areas of your epilepsy:
1. Seizures
- What happens to you before a seizure. Whether you get a warning or ‘aura’ before a seizure
- How long they last
- How often they happen
- The types of seizures you have
- If you have clusters of seizures
- What happens during a seizure:
Any harm you might come to and how likely this is
Do you lose control of your bladder or bowels? If you do, how often does this happen and does it cause any anxiety?
Does your behaviour change?
- If there is a particular cause for your epilepsy. For example, a brain tumour
- Our information about different seizure types might help you to explain your seizures
2. Triggers
- Does anything trigger your seizures? For example, stress or tiredness
- How difficult it is to avoid these triggers
3. Recovery
- How long it takes you to recover from a seizure
- What your seizure recovery is like. Do you need to sleep or is your awareness affected?
- How much help you need after a seizure
- Whether you have had to go to hospital because of a seizure
- Whether you have recently been injured during a seizure
4. Medicines
- If you’ve ever had to have emergency medicine
- Do you have side effects from your medicine? You can check the BNF for the possible side effects of your epilepsy medicines
- If you need reminding to take your medicines either by an alarm, a person or dosette box
- If you’ve ever forgotten to take your medicines and what happened
5. Other issues
- Any support you are given by a partner or carer
- If and how your memory 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
- If you need reminding or encouraging to complete tasks
- If you attend any regular medical, therapy or counselling appointments
- Any relevant information about other health conditions
- Any other impact your epilepsy may have on your life. For example, do you experience anxiety or other mental health issues?
Tips for claiming ESA
- Be detailed in your answers and try to think of specific examples. Don’t just say yes or no
- Talk about how much effort you spend on every task, even if you think it is not relevant
- Get as much medical evidence as you can about your epilepsy. This could be from any professionals involved in your care. For example, a GP, epilepsy specialist, epilepsy specialist nurse, or support worker
- Attach any copies of medical evidence to the Capability for Work questionnaire. Write your name and National Insurance (NI) number on every sheet of paper you attach to the questionnaire. This will help prevent anything from being lost
- Take your time. Don’t let anyone rush you
- It’s important to think about your bad days, don’t just tell them about the good days
- Ask for an audio recording. 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 by contacting your health assessment provider. You can find their details on the gov.uk website
What can I do if I’ve been refused ESA?
If you disagree with the decision made, you can ask to have your case looked at again. This is called a mandatory reconsideration. You have one calendar month from the date of your decision letter to request this.
You can appeal if you don’t agree with the decision from the mandatory reconsideration.
Advice and support:
- Citizens Advice has more information about mandatory reconsiderations and appeals
- Advicelocal can help you to find a local organisation to advise and support you through this process
- Turn2us and Scope have information about ESA
You can also find out more from the governments websites:
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.
Got any questions?
Our expert advisors can help you with any questions you might have about benefits or anything else related to living with epilepsy.
