Benefits and epilepsy

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?

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.

• 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?

• 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.

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.

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.

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.

• 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? 

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.

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

Your form will often be date-stamped, and give you a date when you need to return it by. The benefit may be back-dated (you get payment from the date you made the claim not from the date of the decision). Although you need to complete it within the time limit, don’t rush filling it in. The answers you give could make the difference between getting, or not getting, a benefit that supports your needs.

The forms are long and can feel daunting, so break the task into sections. Complete the form in pencil first so that you can change anything after you have written it. Perhaps come back to the form the next day so you can look at it with fresh eyes. Imagine you are the person reading and assessing your form. Would you get a clear understanding of all the ways in which this person’s epilepsy affects their everyday life?

Some of the questions cover things which may seem very personal or embarrassing, such as going to the toilet, or washing and dressing yourself. It is important to honestly describe any difficulties you have with these tasks. These may be difficulties which your partner, family, or close friends don’t even know about, but it’s really important to provide a complete, and clear, picture of all aspects of your daily living. Remember that it will be a professional reading your form. They need to understand fully how your condition affects you in order to assess your situation, and make an accurate decision on your claim, so that you get the help that you need.

Don’t worry about using the correct ‘medical jargon’ when describing things – use whatever words you would normally use. If you know a medical name for the types of seizure you have, you can use it, but it is more important to describe what happens to you. This is because not everyone’s seizures will be the same, and assessors reading your form may not know about seizure types. For example, if you use the term ‘tonic clonic seizures’, also say ‘this means that the following happens to me in my seizures…’ Likewise, if your medication gives you ‘the runs’ or ‘a runny tummy’ then it’s OK to say that instead of ‘diarrhoea’.

Remember that the person reading the form may not know much about epilepsy, nor understand how epilepsy can affect someone’s life. Also, every individual living with epilepsy will have their own experience. Something that affects you may not have the same impact on someone else. Explain what your epilepsy is like and how it affects you. Think of a ‘bad day’ when you have had a seizure and write about what happened. Also include what could have happened, such as if you had injured yourself or been in a dangerous situation.

If you keep a diary of your seizures, this might help to show how often you have seizures and what happens.

Think about your everyday routine: what you do, what you would like to do, and how your epilepsy affects this. If you need to use extra sheets of paper for your answers, put your name and reference number on each sheet, and attach them firmly. Answer all questions fully and repeat information each time it is relevant. Do not assume that the person reading the form will remember how you have answered one question when reading the next. Imagine that a different person reads each answer on your form separately. Would they be able to understand each answer as it stands on its own?

This might be medical information (such as a clinic letter or a psychological report) from your doctors, or information from a social worker or occupational therapist, for example. Keep a copy of all this information for your own records.

Your friends or family may also be able to help you work out what you want to say in your form. They might be able to remind you of situations where your epilepsy has affected your daily living. If you find it difficult to describe something, you could practise what you want to say with someone else before writing it on the form. If you find it difficult to talk to someone you know about some questions, then perhaps speak to a professional from an organisation which offers help with filling in benefit forms. Although our helpline cannot fill in the forms for you, talking it through may help you to work out what you want to say on your forms.

See 'Organisations that can help' below or call our helpline.

Does it make sense when you read it all together?

Have you used examples to explain how your epilepsy affects you? Remember, try to focus on how your epilepsy makes things difficult, rather than on how well you are coping with your epilepsy.

Keeping a copy of your form means you can refer to it at a later date, or use it to help you fill in other forms. This is particularly helpful when it comes to noting the dates of when things happened. It can also be helpful if you need to ask for your claim to be reconsidered or if you need to appeal against a decision. Appeals may have a higher success rate than initial applications. Also, if your condition changes and you need to reapply for your benefit, you can use your original form for comparison, to make it quicker to fill in new forms. If possible, get ‘Proof of Posting’ from the Post Office when you send in your form. This is a free service and is helpful if there are any queries about when your application was sent and received.