What do I need to think about when claiming benefits for my epilepsy?

If you are applying for a benefit, you will need to complete a form about how your condition affects you. Depending on the benefit you are applying for, the form may be online, or you may need to request a form by phone. Whether or not you are eligible for the benefit, and the amount of money you could be awarded, will depend partly on the answers you give on the form. There are organisations that can give you advice about how to apply for benefits, and some may also be able to help you to complete the forms.

See ‘Organisations that can help’.
 

Focus on how your condition affects you

Being eligible for benefits does not rely on your diagnosis, but on how your condition affects you. So when filling out the form, you need to focus on explaining how your condition affects you. For example, instead of writing ‘because I have epilepsy’ you could write ‘because my epilepsy affects me in the following ways…’ Include anything that you can’t do because of your epilepsy. What do you need to do, or would like to do, that your epilepsy stops you doing?
 

Focus on a bad day

Although it can be difficult to do, always answer the questions on the basis of how things are on a ‘bad day’. On a bad day, what happens to you and what could happen? What can’t you do that you need to do? What might you need help with? This might be help from a family member, a paid carer, or another person. But it also includes help such as grab rails, alarm reminders for medication, and seizure alarms. Whether you actually get this help or not, it is important to say what help you need, and what would happen if you didn’t, or don’t, get this help.

About your seizures

• What are your seizures like and how do they affect you? For example, do you lose consciousness, is your awareness affected, are you confused? How often do you have seizures?

• What happens to you before a seizure? What is a risk to you at these times?

• Do you get a warning that a seizure is going to happen? If you do, how long is it? Are you able to get to a safe place?

• If you do not get a seizure warning, how does the unpredictability of seizures affect you? For example, does this make you anxious about going out, or does it mean that you can’t plan ahead?

• Do your seizures have any specific triggers?

• When are your seizures (day, or night time, or both)? Do you wander around during seizures and need someone to keep you safe?

• Are you incontinent (wet or soil yourself) during a seizure?

• Do you, or might you, injure yourself during a seizure? Use examples of when this has happened to you. If you have reports from your GP or hospital about injuries, you could include these.

• Do you need help when you have a seizure? This might be to keep you safe, to help if you injure yourself, or to help as you recover from the seizure. What could happen if there is no one around to help?

• After a seizure do you need to sleep and recover? Where might you be when this happens, and do you need help with this?

• How do you feel after a seizure – do you recover quickly or do you feel the after effects for a long time? Explain if your seizures have a lasting effect on you, such as feeling tired or confused. Are there any effects on your memory or changes in mood? How long does it take to feel better?

Risks to your safety

• What are the risks to your safety if you have a seizure? For example, if you fall without warning.

• Do you need to have a shower rather than a bath in case you have a seizure?

• What are the risks to you in situations such as gardening, shopping, or using public transport?

• If you have had any accidents or injuries in these situations, include real examples on the form.

Visit Safety and risk | Epilepsy Society

Do you need ‘supervision’?

Do you need someone with you most, or all of the time, perhaps because you have frequent or unpredictable seizures? Focus on what would happen if no one was around to support you when you have a seizure, and explain why this may be dangerous for you. You can write about how you need to have someone to help you, even if you don’t already have that help.

Are there any practical things you don’t do because of your epilepsy?

For example, if the risk of accidents during a seizure means that someone else currently does your ironing or cooking, you might say you don’t need help with these tasks (because someone else does them for you). However, rather than saying ‘I don’t need help with these tasks’ you could say ‘I cannot do these tasks because of the risk of accident/injury’. This helps to build up a picture of how epilepsy can stop you doing everyday tasks. Include any tasks that you can do but that you need help with. Explain what the help is and why you need it.

How does epilepsy affect all aspects of your life?

Does your epilepsy restrict your life, work, studying, or social or leisure activities? If so, in what ways? Epilepsy is not just a physical condition – it can also have a psychological impact. So include any effects on your emotional or mental health and your quality of life, so that this can be taken into account.

• Does your epilepsy, or living with seizures, affect your mood, such as worrying about seizures?

• Do you have mood swings, anxiety, stress, or depression?

• Do any mood problems you have affect your seizure control (make seizures more likely)?

• If you have concentration or memory problems, explain this in the form, including if you need help to remind or motivate you to do things.

Taking medication

• Do you take medication for your epilepsy? If so, does it affect you (for example, does it make you sleepy or drowsy)? Do you have any side effects?

• Do you always remember to take your medication or do you need help to remind you? 

Medical results and other conditions

If you are waiting for the results of any tests or procedures, you can say this on your form, and then send the results when you get them. Remember to describe the impact of any other medical conditions you have which also affect your daily living and activities

Equipment and aids

• Do you need any equipment or safety aids, such as a seizure alarm, to help keep you safe?

Information produced: November 2024