This information is relevant to people with epilepsy living in the UK. However, some of the information may be helpful for people living elsewhere.
If you take epilepsy medicines, but are still having seizures or side-effects, you could ask for a review by your epilepsy specialist. If you are not currently in the care of an epilepsy specialist, you could ask your GP (family doctor) to refer you to one. There are many types of epilepsy specialists, for example a GP with a special interest in epilepsy, a neurologist with expertise in epilepsy, or an epilepsy specialist nurse.
It is likely the epilepsy specialist will review your seizures and treatment, to make sure your diagnosis and treatment are correct. This is important, as some epilepsy medicines only work for some types of seizures, and can make other types worse. So, if you are being treated with the wrong epilepsy medicines for your seizures, an epilepsy specialist might change you to another one. This could make a huge difference to your seizure control.
Requesting a review
Download this letter (Word 616KB). You can add information about your own epilepsy and send the letter to your doctor in the post.
Going to an epilepsy specialist (tertiary) centre
If the epilepsy specialist can’t find the right treatment for you, they may refer you to an epilepsy specialist centre. You may also be referred to an epilepsy specialist centre for another reason if:
- Your doctors are not sure about your seizure type, or epilepsy syndrome
- Your seizures haven’t been controlled with epilepsy medicine within two years of starting them
- You have tried at least two different epilepsy medicines, but are still having seizures
- You have, or are at risk of having, severe side-effects from your epilepsy medicine
- You have a psychological or psychiatric condition
- You have another problem with your brain, such as a tumour
- Your epilepsy is not difficult to control, but you are considering becoming pregnant
At the epilepsy specialist (tertiary) centre, you will be seen by a team of highly trained, healthcare professionals. They will have experience of treating people with difficult to control epilepsy and have access to specialist tests and brain scanning equipment.
During this review, the healthcare professionals will look at your diagnosis, to make sure it is correct. They will also look at your epilepsy medicines, to make sure you are getting the best treatment. They may offer you:
- Different epilepsy medicine
- A combination of different epilepsy medicines
- Vagus nerve stimulation (VNS) in very specific circumstances
- Deep brain stimulation (DBS) in very specific circumstances
- Epilepsy brain surgery
Some children and adults with difficult to control epilepsy might be offered the chance to try a special diet to control seizures, called the ketogenic diet.
Some of these treatments may not be suitable for you. If they are, there are no guarantees that you will become completely seizure free. But they might reduce the number of seizures that you have, or make them less severe.
Epilepsy Action has more information about all these types of treatment.
You can read what other people have to say about trying different treatments in our stories.
Specialst epilepsy teams
The epilepsy team at Nottingham University Hospitals NHS Trust have made a video explaining their service.
What an epilepsy specialist will need to help you get better treatment
Follow steps 1 – 4 on our eight steps to better care. Before your appointment, find out more about the different epilepsy treatments available. Here are some ways you can do this:
- Go to one of our treatment option events, and listen to experts talking about the various different epilepsy treatments
- Visit the Seize Control toolkit
- Read about other people’s treatment experiences
Unhappy with the response from your doctor?
Your doctor will want you to receive the best possible care and treatment. But s/he has to weight up the possible risks and benefits of different care and treatment options too.
If your doctor tells you that a referral to a specialist is not appropriate, ask them to:
- Clearly explain in what situations they think that a referral would be appropriate, and why they believe it’s not currently appropriate. For example, your doctor might want time to adjust the dose of your current medicines, to see if that helps.
- Tell you when they want you to make another appointment to review your treatment progress.
If you are still unhappy after talking to your doctor there is further action that you could take. For example we recommend that you consider:<
- Asking another doctor or the practice manager to help you understand the decision that has been made
- Writing a letter to ask your doctor, or another doctor at the practice, to refer you to an epilepsy specialist for a treatment review
- Asking your doctor to refer you to an epilepsy specialist nurse to talk about your current treatment, seizure control and potential seizure triggers
- Speaking to an advisor at the Epilepsy helpline on Freephone 0808 800 5050
- Setting goals to improve your wellbeing using our free, short, online course Epilepsy and your wellbeing
We really hope that you can find a solution. But if the above action fails, you should know that you are entitled to make a complaint about your care and treatment.
Working in partnership with the Royal College of General Practitioners