Epilepsy Care Pathway

A clear care pathway to show you what to do from the first seizure to referrals and reviews.

Our ‘Care and treatment: your rights and choices’ information explains your rights and choices with regard to your epilepsy care and treatment – “You have a right” indicates things you are entitled to by law. “You should” indicates things that are a recommendation.

Care and treatment: your rights and choices

1.  After a first seizure, you should see a specialist within two weeks.
2.  You have a right to choose who provides your care.
3.  If your epilepsy is difficult to diagnose or manage, you should be referred to a tertiary service for specialist care and treatment.
4. You have a right to access NHS services and to treatment options that are appropriate for you.
5. You have the right to be involved in your health and care and to be given enough information to make informed decisions.
6. You should have a care plan agreed with your healthcare professionals.
7. You have a right to access your own health records.
8. You have a right to NHS dental care.
9. You are entitled to free prescriptions.
10. You, and your carer, are entitled to ask for a health and social care assessment. You may be entitled to welfare benefits.
11. You have a right to be treated with dignity and respect and to not be discriminated against.
12. You have a right to complain about NHS services or treatment.
13. You have responsibilities as well as rights.

After a first seizure, either go to A&E for an initial examination and investigations (such as scans or blood tests) OR visit your GP

A&E will do an initial examination and investigations (such as scans or blood tests). If you went to A&E first, you may be referred to your GP or to a specialist.

Tests
These could include an MRI (magnetic resonance imaging) scan, EEG, (electroencephalogram), blood tests, and any other appropriate tests with a relevant specialist.
 

Visit the website of your local NHS Hospital trust for details of epilepsy specialists and services near you. 

If your GP suspects epilepsy, they will refer you to hospital to see a specialist with expertise in epilepsy. You should be seen within 2 weeks and you should be able to choose the hospital you go to.

Visit the website of your local NHS Hospital trust for details of epilepsy specialists and services near you. 

Your medical history will be taken and you should be referred for tests to be done within 6 weeks. Bring someone who has seen your seizures, or a recording of seizures on a mobile phone if possible. You should be given information and advice about the risk of a second seizure.

Tests
These could include an MRI (magnetic resonance imaging) scan, EEG, (electroencephalogram), blood tests, and any other appropriate tests with a relevant specialist.

Discuss treatment, safety and risks, and any other relevant information with your specialist, and involve a family member or friend if appropriate.

Initial treatment
Most people begin by taking a single anti-seizure medication (ASM), starting at a low dose and gradually increasing it until the most effective dose is found. If seizures continue, an alternative ASM may be tried. If seizures are not controlled with a single ASM another drug may be added.

You should be given information and have time to think, discuss, and ask questions about how your epilepsy affects you. This might include lifestyle issues such as driving, work, education, leisure activities, and starting a family.

You may want to talk to our helpline. 

Your neurologist should discuss the choice of ASM and possible side effects, and talk about what to do if your seizures continue or if you are concerned about side effects. This is a time to develop an epilepsy care plan with your specialist or epilepsy specialist nurse (ESN). This is an overview of your epilepsy, its treatment and management, and other issues important to you.

It might help to keep a record of your seizures in a seizure diary.

See warnings and guidance about sodium valproate for people under the age of 55. 

After a year seizure free, you may be discharged back to your GP. You can ask your GP for a review of your epilepsy. You should be referred back to a specialist if other conditions are diagnosed or if you need specific advice, such as about starting a family

Your specialist may try alternative ASMs or a combinations of ASMs. The aim is to get the best seizure control possible with minimum side effects. You can ask for a review of your treatment, with your specialist, ESN or GP.

You should be referred to tertiary care for a further assessment of your epilepsy. Other treatment options may be appropriate. You should be referred to an alternative specialist if you have a diagnosis of non-epileptic seizures.

Definition
Tertiary care – specialist care in hospitals or units for specific conditions (for example, detailed assessment or surgery for  epilepsy). You have to be referred to tertiary care from either primary or secondary care.

Further treatment
Alternative ASMs may be tried but, if these are not working, other forms of treatment may be considered, such as specialist diet, brain surgery, vagus nerve stimulation (VNS) therapy, and supportive therapies (eg psychology for memory problems or occupational therapy for help with daily living). 

Emergency treatment. Your specialist should talk to you about emergency treatment options.

Information produced: March 2023