This guide provides insights into epilepsy and its potential impact on daily living and mobility. It explains how epilepsy might affect your ability to carry out everyday activities safely, effectively, accurately, and repeatedly.
Epilepsy is caused by changes in the brain which leads to seizures (fits).
Symptoms can vary depending on the type of seizure:
A seizure can last a few seconds or minutes and will stop by itself. You may or may not be aware of having a seizure.
Call 999 if:
You think someone is having a seizure and:
It’s the first time it’s happened
It lasts long than usual for them or longer than 5 mins if you do not know how long their seizures usually last
They do not recover as usual afterwards, or they have another seizure without recovering between seizures
They have had 3 or more seizures in 24 hours.
Epilepsy is diagnosed through discussion with a neurologist as to what happened before, during and after the seizure. Some tests you may have include:
An electroencephalogram (EEG) – checks electrical activity in your brain
An electrocardiogram (ECG) to check your heart
Scans e.g. MRI or CT
Blood tests
Genetic testing
Epilepsy is diagnosed if you have had more than one seizure or tests show that you’re at risk of having more seizures.
A care plan will be put in place detailing the care and support you need and will tell your family/carers/friends what to do if you have a seizure.
Medication may be prescribed to prevent seizures. You may also be given medicine to use as an emergency treatment if you have a seizure which lasts longer than usual. This will need to be given to you by another person.
If you have not had a seizure for 2 years, your specialist may suggest stopping treatment by gradually reducing the dose.
Rarely you may need other treatments which can include:
Brain surgery
Putting a small electrical device under the skin on your chest to help reduce seizures (vagus nerve stimulation)
A specialist diet can reduce seizures – ketogenic diet. This is a very low carbohydrate high fat diet which aims to induce ketosis. This must be done under medical supervision, and it is supposed to reduce seizures for drug resistant seizures.
The following sections outline the daily activities assessed in PIP claims and how epilepsy may affect them. This is not an exhaustive list; ensure all relevant details are included in your application.
Epilepsy can impact how you prepare a simple meal in a variety of ways:
You may experience the following when eating and drinking:
This descriptor examines how you manage health-related treatments, and you may find:
This descriptor is about the ability to use a toilet independently and to be able clean yourself afterwards and have no continence issues:
This looks at the ability of being able to bath or shower and what issues you may experience:
• You need to be prompted or reminded to have a bath or shower because you avoid this activity due to the probability of you having a seizure in the bath or shower and/or the side effects of your epilepsy medication.
• You will not have a bath or shower unless there is somebody around who will be able to assist you should you have a seizure.
• Your seizures mean that you need someone with you in the bathroom whilst you shower or have a bath.
• You use a seat in the shower or a bath board in the bath to reduce injuries from falls.
• Grab rails are used for balance and prevent falling in the bath or shower.
• For safety, you tend to have a shower because the water drains away and, therefore, reduces the risk of drowning.
• For safety, when you have a bath, you have a shallow depth of water to lessen the risk of drowning should you have a seizure in the bath.
• You use a voice monitoring device when you bath or shower which alerts someone else should you have a seizure.
• You use a non-slip mat in the bath or shower.
• After a seizure your recovery may mean that you are too fatigued, lack motivation to have a bath or shower.
You may have an aura prior to a seizure so you may be able to alert someone and/or get yourself to a place of safety to reduce the risk of injuring yourself or someone else.
This looks at whether you can dress and undress yourself and choose appropriate clothing:
You need to rest after getting dressed or undressed because it exhausts you. s at whether you can dress and undress yourself and choose appropriate clothing:
This descriptor looks at someone’s ability to verbally communicate and to be able to express and convey information and to be able to receive and understand information
However, after a seizure during the recovery phase, you may struggle to communicate verbally because you can’t find the words, are disorientated, extremely fatigued, struggle to process and understand information you are hearing and be able to formulate appropriate responses.
This relates to the ability to read and understand written or printed information
People with epilepsy can struggle socially and find it difficult due to:
You need someone with you when mixing with other people just in case you have a seizure as they know what to do and can provide you with your rescue medication, if necessary.
This descriptor looks at if you can manage their money:
These evaluate how epilepsy may affect mobility related tasks. This is not an exhaustive list; ensure all relevant details are included in your application.
Epilepsy may make planning and following a journey challenging:
Moving around may be affected due to epilepsy:
For your safety, you have a key safe so that people can gain access to your home, should they need to.
It is important that when you complete your PIP form, that you include how epilepsy affects you in relation to each descriptor. Ensure that you give specific examples, under each descriptor, where you have struggled due your epilepsy, where appropriate. It is important that you include any aids, adaptations or support/supervision that you need to help you complete each activity, where appropriate.
This information only covers epilepsy. If you have any other health conditions and/or disability you should include how they impact you under the relevant descriptors.
Remember to include copies of any relevant medical evidence, diagnosis letters, care plans etc to support your claim for PIP.
Please remember that this is not a complete list and if you have other symptoms or conditions that affect this descriptor, they need to be included on your PIP claim. More information can be found at www.gov.uk
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