Newly diagnosed with epilepsy – your guide

The Equality Act 2010 is a law that protects people who live in England, Scotland and Wales from discrimination. There are different laws for people who live in Northern Ireland.

You may not think of yourself as having a disability. But in most cases epilepsy can be defined as a disability. This means it is against the law for you to be treated unfairly because of your condition. Find out more about epilepsy and your rights.

If you have a driving licence, you’ll need to stop driving straight away and let the driving agency know that you’ve been diagnosed with epilepsy. You may be able to get your licence back after 12 months of being seizure free. Find out more about the driving rules for epilepsy.

There are some travel benefits available if you need to use public transport for a while. Find out more about travel and public transport.

Many people with epilepsy work. Whether your condition effects your job will depend on a few things. This includes your type of epilepsy, if your seizures are under control and what kind of job you do. Find out more about work and epilepsy.

You may be able to claim benefits if you have epilepsy, whether you are working or not. Find out more about benefits and other financial support schemes available

You are also entitled to get all your NHS prescriptions for free. Find out more about accessing free prescriptions.

Dying from epilepsy is rare. But, sadly, it can happen. SUDEP is the sudden unexpected death in epilepsy (SUDEP). Everyone’s risk of SUDEP is different.

Knowing what the risks are can help you take steps to reduce them. We have more information about SUDEP and other epilepsy-related deaths.

Seizures can put you at risk of accidents and injury. We have more information about how to stay safe inside and outside the home.

Epilepsy should not stop you from trying to have a baby. Most people with epilepsy do not have a seizure during pregnancy and have healthy babies. Find out more about starting a family.

There are some types of epilepsy that have a risk of being inherited. But most children of people with epilepsy do not develop epilepsy. Find out more about genetics and epilepsy.

It’s natural to be concerned about your children’s safety if you are having seizures. We have information about looking after young children when you have epilepsy.

It is your choice whether you tell people about your epilepsy or not. It may be useful to tell people when you are ready. Then they can help you when you need them.

By law you do not have to tell your employer about your epilepsy. This applies to your current employer or a possible future one.

But you must tell your employer if you think that your condition may affect your own safety or the safety of other people around you.

Find out more about epilepsy and work.

You will likely feel lots of different emotions after being diagnosed with epilepsy.

For some people, being diagnosed with epilepsy can cause anxiety or shock. For others it can be a relief, especially if you’ve had unexplained symptoms for a long time.

Everyone is different and there’s no right or wrong way to react. Find out more about coming to terms with a diagnosis.

It is important to look after your mental health as well as your physical health. Find out more about epilepsy and your wellbeing.

Some epilepsy medicines may affect treatments for other conditions. Talk to your epilepsy specialist, specialist nurse or GP about your other conditions and what medicines you are taking. Your pharmacist can double check your prescriptions and any side effects for you too.

Some conditions linked to epilepsy are also more common in older people, such as stroke or dementia. Your doctor should be able to tell you whether there’s a known cause for your epilepsy.

Epilepsy medicine is the main treatment for epilepsy. These can reduce or stop your seizures.

Some people find that their seizures stop completely after taking medicine. Others need to try a few medicines before they find one that works.

“There is still have a lot to learn about epilepsy. But there is lots of research going on and they are making new advances all the time. It’s important to know because you have to keep looking out for new things/developments.”

Like all drugs, epilepsy medicine can cause side effects. Many of these are mild and will improve over time.

Epilepsy medicines do not work for everyone. If this happens, there are other treatment options, including:

• Surgery
• Vagus nerve stimulation
• Ketogenic diet

In England, Wales and Northern Ireland, the National Institute for Health and Care Excellence (NICE) makes recommendations about diagnosing and treating people with epilepsy. NICE recommends that children and young people should have a regular epilepsy review with a doctor or nurse at least once a year.

Adults should have a review at least once a year if any of these things apply:

• You have a learning disability
• You have drug-resistant epilepsy (meaning you have tried 2 or more epilepsy medicines and are still having seizures)
• You are at high risk of sudden unexpected death in epilepsy (SUDEP)
• You have another serious health problem alongside your epilepsy, such as a complex mental health problem
• You are taking epilepsy medicine that has a risk of long-term side effects or interactions with other medicines
• You can get pregnant and are taking sodium valproate or another medicine that has a high risk of causing problems if taken during pregnancy

NICE also says you should be offered an appointment with an epilepsy specialist nurse at least twice a year:

• If you are still having seizures
• After any visits to accident and emergency

You can ask for a review of your care if you have any concerns, need support or something has changed. For example, if you:

• Want to stop or change your medicine regimen
• Want to have a baby
• Are concerned about your seizure pattern

In Scotland

The Scottish Intercollegiate Guidelines Network (SIGN) Guidelines make recommendations about epilepsy treatment for people in Scotland. The SIGN guidelines say that everyone with epilepsy should have a review once a year.

A wide range of healthcare professionals might be involved in your care. This includes the following.

GPs

GPs have a role before and after diagnosis, including:

• Referring to specialists
• Prescribing medicine
• Support to help you manage your epilepsy
• Identifying any new health issues

Pharmacists

Pharmacists provide the following services:

• Dispensing NHS prescriptions
• Repeat prescription services (with agreement from your GP)
• Emergency supplies of medicine (subject to the decision of the pharmacist)
• Non-prescription medicines like paracetamol
• Disposal of unwanted or out-of-date medicines
• Advice on treating minor health concerns and healthy living
• Helping you to understand the correct dose and how often a medicine needs taking

Epilepsy specialists

An epilepsy specialist is the doctor you see at hospital about your epilepsy. They are called neurologists. This is a doctor specialising in the diagnosis and management of conditions affecting the brain and nervous system, including epilepsy.

Some neurologists specialise in epilepsy and have extra training. These are called epileptologists.

Epilepsy specialists diagnose epilepsy and plan your epilepsy treatment and care. Who you get referred to will depend on what is available in your area.

If you are aged under 18 your specialist is likely to be a paediatrician (a doctor who treats and cares for children) with experience of diagnosing and treating epilepsy.

The role of an epilepsy specialist can include:

• Making a diagnosis
• Providing information
• Arranging access to an epilepsy specialist nurse, if available in your area
• Making decisions about referrals for tests or to tertiary services
• Working with you to find the right treatment
• Epilepsy healthcare reviews
• Helping with the move (transition) from children’s (paediatric) to adult services

Epilepsy specialist nurses

If available in your area, an epilepsy specialist nurse (ESN) is ideally part of your care. This is someone you can contact between scheduled appointments.

ESNs are trained and have experience in caring for people with epilepsy. They can provide a link between you and other people involved in your care.

An ESN can:

• Make sure you are getting the right help and support from other healthcare professionals
• Liaise between services and visiting at home and school/college if necessary
• Provide information and emotional support. They can also refer to other professionals, such as for counselling
• Provide emergency medication plans and training
• Give advice about your epilepsy medicine
• Run clinics
• Help with the move (transition) from children’s (paediatric) to adult services

Your doctor or epilepsy specialist nurse should give you the information you need to make informed choices about your treatment. This should be tailored to your needs.

We have a list of suggested questions to ask your doctor that includes tips to help you get the most out of appointments.

It’s important to take your epilepsy medicine as prescribed. Missing a dose can increase your risk of having a seizure. Your doctor should give you instructions on how much of your medicine to take and when to take it.

Talk to your specialist or epilepsy specialist nurse if you have any problems with taking your medicine. For example, side effects or difficulty swallowing tablets. They should be able to suggest changes to help. Our page on taking your epilepsy medicine has some suggestions to help make taking your medicine easier.

There are guidelines about the standard of treatment and care you should get for your epilepsy. This includes how quickly you should get to see a specialist, and how often you should have a review of your treatment.

We explain more on our page about getting the right treatment and care. These pages also give tips on what to do if you’re not happy with your treatment and care.

Keep advocating for yourself – if you’re not happy with decisions made by medical professionals, make sure to challenge them. You know your body.

Doctors should give you a care plan with details of the care and support they’ve agreed with you. We have a template care plan you could ask them to use.

Download a copy or order a free copy below.

You might find that some things make you more likely to have seizures. These are often called triggers. Possible triggers include stress, not sleeping well and drinking too much alcohol. Only 3 to 5 in 100 people with epilepsy have seizures triggered by lights that flash or flicker. Find out more about photosensitive epilepsy

Avoiding your triggers can help you to have fewer seizures. But not everyone is able to identify a trigger for their seizures.

Keeping a seizure diary can help you and anyone involved in your epilepsy care see if your medicine is working, and if there is a pattern to your seizures. It can also help you to find out if anything triggers your seizures. Some people use an app on their phone. If you prefer a paper diary you can download ours.

Clinical Knowledge Summaries (2025) Prevalence | Background information | Epilepsy | CKS. Available at: https://cks.nice.org.uk/topics/epilepsy/background-information/prevalence/ (Accessed: 22 April 2025)

Gov.UK (no date) ‘Definition of disability under the Equality Act 2010’. Available at: https://www.gov.uk/definition-of-disability-under-equality-act-2010 (Accessed 18 July 2025)

Gov.UK (no date) Epilepsy and driving. Available from: https://www.gov.uk/epilepsy-and-driving (Accessed: 17 April 2025)

NICE(2025) Reducing the risk of epilepsy-related death including sudden unexpected death in epilepsy | Epilepsies in children, young people and adults | Guidance Available at: https://www.nice.org.uk/guidance/ng217/chapter/10-Reducing-the-risk-of-epilepsy-related-death-including-sudden-unexpected-death-in-epilepsy (Accessed: 15 April 2025).

RCOG (2020) Epilepsy in pregnancy. Available at: https://www.rcog.org.uk/for-the-public/browse-our-patient-information/epilepsy-in-pregnancy/ (Accessed: 15 April 2025).

Dreier, J.W. et al. (2020) ‘Epilepsy risk in offspring of affected parents; a cohort study of the “maternal effect” in epilepsy’, Annals of Clinical and Translational Neurology, 8(1), pp. 153–162. Available at: https://doi.org/10.1002/acn3.51258.

Sen A, Jette N, Husain M, Sander JW. Epilepsy in older people. Lancet. 2020 Feb 29;395(10225):735-748. doi: 10.1016/S0140-6736(19)33064-8. PMID: 32113502.

The Scottish Intercollegiate Guidelines Network (2018) Diagnosis and management of epilepsy in adults. Available at: SIGN143_Guidelinehttps://www.sign.ac.uk/media/1079/sign143_2018.pdf