Frequently asked questions

Information and support

We provide information on all aspects of epilepsy, from key facts, causes, syndromes, seizures, diagnosis and treatments to taking care of yourself and your child, explaining epilepsy to your child, working with healthcare professionals, educational support, and much more.

Find out everything you need to know about epilepsy by clicking on the links below:

About epilepsy

Parents and carers  

Our Support and inclusion team works with young people and their families to help you through diagnosis and beyond, to better understand your rights and get you the right services and support.

Find out more on our Support and inclusion services page, where you’ll also be able to contact us using our online form.

If you have epilepsy :

  • The Channel, our online space for young people living with epilepsy
  • Our Mental health wellbeing space, which covers anxiety, depression, isolation, feeling overwhelmed and self-worth  
  • We partner with Shout – a free, confidential, 24/7 text support service for anyone in the UK struggling to cope

if you are the parent of a child with epilepsy we have a guide for parents: epilepsy in infants and young children and a guide for parents: childhood epilepsy, which also include sections on looking after yourself. 

Epilepsy Action offers the following support services for parents and carers:

  • Virtual groups – online talk and support groups
  • Support for you – contact trained advisors, connect with others and access epilepsy courses for free

Other support services:

  • Heads Together – a mental health initiative spearheaded by The Royal Foundation of The Prince and Princess of Wales
  • Young Minds – mental health support for parents, young people and those who work with young people

Mental health and wellbeing

Young people with epilepsy can struggle with their mental health wellbeing. Our Mental health wellbeing space is designed to help you look after your mental health, get top tips and coping strategies and to hear from other young people with epilepsy about how they are supporting their mental health wellbeing.

If you are struggling to cope, we have partnered with Shout  – a free, confidential, 24/7 text support service for anyone in the UK .  To start a conversation, text PURPLE to 85258. If your life is at risk or you do not feel you can keep yourself safe, call the emergency services on 999.

The NHS also has urgent mental health helplines available 24 hours a day for advice and support: Mental Health Helpline for Urgent Help - NHS (

Other support services:

  • Heads Together – a mental health initiative spearheaded by The Royal Foundation of The Prince and Princess of Wales
  • Young Minds – mental health support for parents, young people and those who work with young people

We have partnered with Shout to offer support to young people with epilepsy who are struggling with their mental health.

Shout is a free, confidential and 24/7 text support service for anyone in the UK who is struggling to cope.

Shout’s trained volunteers are available around the clock to listen and support anyone who is suicidal, depressed, anxious or overwhelmed. The service is anonymous and does not show up on phone bills.

To start a conversation, text PURPLE to 85258. If your life is at imminent risk, call the emergency services on 999

You can also call Childline to speak to someone about how you are feeling. 

Medication, treatments and technology

The way that medicines are bought and stocked in the UK has been changing over the last few years. These changes can sometimes cause problems with the supply of some medicines. You can get the latest information on epilepsy medicine shortages and delays from Epilepsy Action’s Drugwatch pages. Medicines for Children also offer some practical steps that can help you to avoid medicines shortages.

Anti-seizure medications are the main treatment for epilepsy. All medicines can cause side effects and the risk of experiencing them varies from person to person. If you have questions or worries about medication speak to your doctor or epilepsy nurse.

The Medicines for Children website has lots of useful information. Your medication box should also include a patient information leaflet.

Young women with epilepsy need to make informed decisions about their anti-seizure medications in relation to contraception and pregnancy.

Click on the links below to find out about anti-seizure medications, contraception, pregnancy planning and pregnancy, breastfeeding, and medications monitoring:

Cannabis-based medicine is different from street cannabis or CBD products bought on the high street or online. Cannabis-based medicines are only prescribed in certain circumstances. Some children with rare, severe forms of epilepsy can be prescribed cannabis-based medicines if other treatments are not suitable or have not helped. If you have questions about cannabis-based medicines for treating epilepsy speak to your doctor. Find out more on our Cannabis-based antiseizure medication page.  

The ketogenic diet is a high-fat, low-carbohydrate, controlled protein diet which is done under medical supervision. It can lead to better seizure control for those with some childhood-onset epilepsy syndromes, and for those who don’t respond well to anti-seizure medications.

Find out more on the Matthew’s Friends website.

We don’t endorse any particular brand of seizure alarm. You can find out more about seizure alarms, monitors, other equipment, apps and subscriptions, including details of product manufacturers/suppliers, on the following pages:


You may be able to get additional support for your exams, known as access arrangements.  Any support you receive should reflect your normal way of working. For example, if you are given extra time to do assessments in class, you are likely to be allowed extra time in exams.

You may also be entitled to special consideration if your epilepsy affected your performance in an exam, or whether you were able to attend. Special consideration means your exam mark is adjusted after the exam by the exam board.

Find out more about support for exams on the Your rights at school page

Special educational needs refer to any difficulties you have that make it harder to learn compared to other students your age. They can include difficulties with:

  • Reading and writing
  • Your ability to understand things
  • Behaviour
  • Concentration
  • Physical abilities

Depending on where in the UK you live different terms will be used for special educational needs.

Find out more about support for special educational needs on the Your rights at school page.

You may be entitled to DSA to cover study-related costs related to a mental health problem, long-term illness or other disability.

You may get DSA on its own or as well as other student finance. How much you might get depends on individual needs, not household income.

DSA does not need to be repaid.

Find out more here about Disabled Students’ Allowance.

Depending on where you live in the UK, you need to apply to one of the following agencies:

Financial support and insurance

A child under the age of 16 may be able to get DLA to help with the extra costs, if they need much more looking after than a child of the same age without a disability.

You can find out more at Disability Living Allowance (DLA) for children, including details of all eligibility requirements.

Children and young people over the age of 16 with a long-term physical or mental health condition or disability may also be eligible for a Personal Independence Plan (PIP).

If you live in Northern Ireland, you can find out more here about Disability Living Allowance for children.

If you live in Scotland, you may be entitled to Child Disability Payment.

Click here for the Welsh language DLA guide, Lwfans Byw i’r Anabl (DLA) i oedolion.

We don't currently work with or recommend any companies. But it is possible to get travel insurance.

You can also try the following:

If you’re travelling to Europe, you can apply for a Global Health Insurance Card (GHIC), which is free of charge. It does not cover everything, so you should also have insurance.

Different rules apply in Iceland, Liechtenstein, Norway and Switzerland. Find out more from GOV.UK, Apply for a UK Global Health Insurance Card (GHIC), and the NHS, Get healthcare cover for travelling abroad.

What benefits you can claim and how much you might get will depend on your circumstances. More information on disability benefits can be found on the Contact and Citizens Advice websites.

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