completing benefit forms
Some people with epilepsy can claim health-related benefits, such as Disability Living Allowance or Personal Independence Payment, Attendance Allowance, and Employment Support Allowance.
Who can claim benefits?
There are several different benefits, and what you may be eligible for depends on your personal circumstances (for example, whether you work or not). Whether you are eligible for a benefit based on your epilepsy will depend on what your epilepsy is like and how it affects you, because epilepsy affects people in different ways. If you are applying for a benefit, you will need to complete a form about how your condition affects you. 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 these forms.
Generally, forms need to be completed with the 'worst case scenario' of what help you need and what could happen to you when you have a seizure. Although it can be difficult or upsetting to focus on possible risks around having epilepsy, it is important to help the person assessing the form to understand the risks, and what could happen to you when you have a seizure.
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 how your epilepsy affects you. 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 answers 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 help do you need? 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?
What happens during your seizures? For example, do you lose consciousness, is your awareness affected or do you become 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 (know when a seizure will happen)?
If you get a warning, how long is it? Can you always get somewhere safe?
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 you have any triggers (that set off your seizures)?
When do you have seizures (in the day time, night time or both)? For example, do you wander around at night during seizures and need someone to keep you safe?
Are you incontinent (wet or soil yourself) during a seizure?
Do you, or are you likely to, injure yourself during a seizure? Can you use examples of when this has happened to you? If you have reports from your GP or hospital about previous injuries, you could use 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 very tired or confused, any effects on your memory or changes in mood.
Risks to your safety
What are the risks to your safety if you have a seizure? For example, if you fall without warning, what are the risks?
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 'supervision'?
Do you need someone with you most or all of the time, perhaps because you have frequent or unpredictable seizures? The benefit forms might call this 'a need for supervision'. Focus on what would happen if there wasn't anyone 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 someone to 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 for you, 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 having seizures?
Do you have mood swings, anxiety 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 on 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 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 they are available. 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 medical equipment?
Have you had any occupational therapy or social services assessment?
Do you need any equipment such as a seizure alarm, to help keep you safe?
Completing the form
Benefit forms can be long and complicated, and completing them may feel overwhelming. You may find these general suggestions helpful.
Give yourself time
Your form will often be date-stamped, and give you a date by which you need to return to it. The benefit may be back-dated (you get payment from the date you get the form, not from the date when you return it). Although you need to complete it within the time limit, don't rush filling it in. The answers you give are important, and could be the difference between getting, or not getting, a benefit that supports your needs.
Tackle the form in sections and use pencil first
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 that 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 embarassing, 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 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.
Use words that work for you
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 type of seizures 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, ‘complex focal 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'.
Be clear and explain your epilepsy
Remember that the person reading your 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, and what could have happened, such as if you had injured yourself or been in a dangerous situation.
Use a seizure diary
If you keep a diary of your seizures, this might help to show how often you have seizures and what happens.
Give as much relevant information as possible
Think about your everyday routine: what do you do, what would you 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. Answer all questions fully and repeat information each time it is relevant. Don't 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?
Provide additional information if the form asks for it
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.
Talk it through with someone
Your friends or family may 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 embarrassing 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. You can also call our helpline. Although the 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.
Check your completed form
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.
Keep a photocopy of your form
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 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, and it might make it quicker to fill in new forms.
If possible get a ‘Certificate 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.