Newly diagnosed with epilepsy – your guide

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 specialist(s)
• Prescribing medicine(s)
• Support to help you manage your epilepsy
• Identifying any new health issues

Pharmacists

Your prescriptions will be collected from a pharmacist. 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• Disposal of unwanted or out-of-date medicines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

People who take epilepsy medicine are entitled to get all their NHS prescriptions free in the UK. Find out more about accessing free prescriptions.

Epilepsy specialists

An epilepsy specialist is the doctor you see at hospital about your epilepsy.

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.

For adults whose epilepsy and seizures are not controlled the epilepsy specialist is likely to be a neurologist. This is a doctor specialising in the diagnosis and management of conditions affecting the brain and nervous system, including 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. To learn more see the page about transition

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 include:

• 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, emotional support, and referring to other professionals, such as for counselling
• Provide emergency medication plans and training
• Give advice about your epilepsy medicine(s)
• 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. So if you want information about something to do with your epilepsy, no matter how big or small, ask them.

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

For your medicine to work well, it’s important to have a steady supply of medicine in your body. 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.

If you have any problems with taking your medicine, like side effects or difficulty swallowing tablets, talk to your specialist or epilepsy specialist nurse. 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.

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. A very small number of people have seizures triggered by lights that flash or flicker.

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 or order a free copy below.

If you have a driving licence, you’ll need to stop driving and let the driving agency know that you’ve been diagnosed with epilepsy. We know that for a lot of people, having to stop driving is one of the hardest parts of getting an epilepsy diagnosis.

Key facts

• People with epilepsy can get their driving licence back once they meet the medical standards for driving
• For most people this means being seizure free for 12 months
• There are different rules for sleep seizures and seizures that don’t affect your awareness
• If you’ve had to give up your driving licence, you can get free or discounted bus and train travel
• You might be entitled to help with work-related travel costs from Access to Work

Find out more:

• Driving and epilepsy
• Benefits for people with epilepsy

You might be worried about what impact your epilepsy will have on your job, or that it will stop you finding work. It’s important to know that employers have a legal duty to treat you fairly and not discriminate against you because of your epilepsy.

We’ve got more information about your rights when working or looking for work and also the laws that protect you from discrimination.

If your employer needs to learn more about epilepsy and how to support you, ask them to take a look at our employer toolkit.

We know that having epilepsy can bring financial worries, especially if you can’t work or need extra care and support. You might be able to claim benefits to help. Visit our benefits page to find out what benefits are available, and where to get support with claiming them.

Seizures can put you at risk of accidents and injury, so it’s a good idea to think about safety, especially until your seizures are well controlled. This doesn’t always mean you have to stop doing the things you enjoy or give up your independence. Often, there are simple safety steps you can take to make things safer.

Our safety advice includes some practical tips to make activities safer, and guidance on how to weigh up risks while still having a good quality of life. We also have information about how family members can help keep you safe during a seizure.

• Safety advice
• Safety aids and equipment
• Sport and leisure

Your specialist should give you individual advice about the risks involved with your epilepsy. One important risk they should discuss with you is the small risk of dying from epilepsy, including sudden unexpected death in epilepsy (SUDEP). Our page on epilepsy-related deaths and SUDEP talks about the risks and how to reduce them.

Keeping you safe during your seizures

You might want to make sure that family, friends and work colleagues know how to keep you safe if you have a seizure. We have lots of information to help, including free posters and leaflets and an online course.

If you have children, you might be unsure about whether to tell them about your epilepsy, and how to explain it. We think it’s important for children to know what epilepsy is and that it’s nothing to be afraid of. When you are ready to tell them, our children’s books can help you with that conversation.

We also have advice on looking after a baby or young child when you have epilepsy.

If you want to have children in the future, having epilepsy should not stop you. Our guide to having a baby covers planning a baby, pregnancy, birth and breastfeeding.

If you have been diagnosed with epilepsy later in life, you are not alone. Out of all age groups, the highest number of people receiving a new epilepsy diagnosis are over 75.

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.

There may be some extra things to think about if you have epilepsy and are an older person:

Taking medicines for more than one condition

Some epilepsy medicines affect treatments for other conditions. If the doctor who prescribes your epilepsy medicines knows about everything else you are taking, the risk of this happening is small. Your pharmacist can double check your prescriptions and any side-effects for you too.

Bone health

Some people taking epilepsy medicines are at risk of having weaker bones. Osteoporosis is also more common in older people. We have more information about bone health and you may want to think more carefully about safety and managing your risk of falls

Living independently

You may be worried that you can no longer live independently. If you lived by yourself before, there’s no reason why you shouldn’t now. You’re less likely to have a seizure if you’re taking your epilepsy medicines. You can also follow safety advice to reduce any risks.

Looking after others

If you are concerned about looking after grandchildren, we have advice on looking after a baby or young child.