This information is relevant to people with epilepsy living in the UK. However, some of the information may be helpful for people living elsewhere.
Almost half of the 600,000 people with epilepsy living in the UK have poor seizure control. For many people, this is despite taking epilepsy medicines to try and control their condition. Having poor seizure control puts their health at risk. It might also impact on their employment, education, social lives and wellbeing.
That’s why we’ve launched Seize Control – a new campaign designed to help you take charge of your seizure control. Backed by the Royal College of GPs (RCGP), the campaign supports people to work with their health professionals to improve their current care and treatment.
Epilepsy Action and the RCGP want to improve the lives of everyone with epilepsy. The ultimate goal of your treatment is being free of seizures, while avoiding unwanted medicine side-effects. We estimate that with better treatment for their epilepsy, 108,000 more people could become seizure free. Others might find a treatment that reduces the number or severity of their seizures or reduced the side-effects they experience.
“Being free of seizures and unwanted side-effects is the ultimate goal of epilepsy treatment. Realistically with the current treatments available, it is not possible for everyone to become seizure free. However, people with epilepsy have the right to expect that this will be the aim of their treatment. The Seize Control campaign resources are valuable tools in empowering people with epilepsy to visit their doctor about other treatments if they are not seizure free.” Dr Greg Rogers, epilepsy clinical champion at the RCGP.
What is a ‘better treatment’ for epilepsy?
“A better treatment helps me to feel better and get on with my life” – Richard
If your current treatment is not controlling your seizures, or you are experiencing unwanted side-effects, there are other treatments that might be considered. A ‘better treatment’ for a person’s epilepsy is one that allows them to have as few seizures and side-effects as possible.
“In the case of epilepsy, there isn’t one single treatment type that is ‘better’ than another.
“Epilepsy is a very individual condition and affects people in different ways. Epilepsy medicines (for example lamotrigine, carbamazepine, sodium valproate) are the main treatments for epilepsy, and are used to treat the majority of people with the condition. Some people may need to take a combination of different epilepsy medicines to control their seizures. Even then, epilepsy medicines do not work for everyone.” Catie Picton, Epilepsy Nurse Specialist, Queen’s Medical Centre.
If someone is still having epileptic seizures despite medication this may be because the person:
- Is on the wrong medicine for their type of epilepsy
- Is on the wrong dose of their epilepsy medicine
- Forgets to take their epilepsy medicine at the right time every day
- Chooses not to take their epilepsy medicine
- Does not take the exact dose prescribed by their doctor
- Has drug resistant epilepsy, which means they have tried two or more epilepsy medicines, either alone, or together, but are still having seizures.
Why aren’t more people asking for better treatment?
There are lots of possible reasons.
- Some people aren’t aware of the different treatment options available, including trying different epilepsy medicines
- Some people are aware of different treatment options, but have never asked whether they would benefit from them
- Some people are so used to having seizures that they have accepted them, without asking their doctors about other treatment
- Some people have tried other treatments in the past, which have made their seizure or side-effects worse, so don’t want to try anything else
To discuss this campaign contact Nicole on firstname.lastname@example.org.
Working in partnership with the Royal College of General Practitioners