This National Epilepsy Week we’re supporting you to take steps to Seize Control of your epilepsy. Of the 600,000 people living with epilepsy in the UK, around 288,000 are still experiencing seizures. We estimate that with better treatment 108,000 more people could become seizure free. Our National Epilepsy Week campaign supports you to ask for better treatment if your seizures are not controlled.
Find out more about the campaign or follow our eight steps below:
I work in healthcare in primary care. How I can help with the campaign?
We need GPs and those working in primary care to help us with the second stage of the campaign. Help us understand review, referral and treatment processes. Please complete our survey. We'll use the information gathered to campaign for changes to epilepsy care.
My seizures aren’t controlled – how can I ask for better treatment?
We have launched the Seize Control campaign toolkit to help you to work more closely with your healthcare professions such as your GP, epilepsy specialist, and epilepsy specialist nurse. Asking them a few specific questions could help you, and them, make the right decisions about your epilepsy treatment.
Eight steps to better treatment
Complete our free, short online course, Epilepsy and your wellbeing. This course will help you to learn more about your epilepsy, how to get the most from your seizure diary and help you to set goals to improve your wellbeing.
Keep a seizure diary. Every time you have a seizure, make a note of the type, how long it lasted, what you were doing, and how you felt beforehand. In this way, you and your healthcare professionals will be able to see how many seizures you have had, and try to recognise any seizure triggers. Common triggers for seizures include not taking epilepsy medicine as prescribed, feeling tired, not getting enough sleep, stress, and alcohol. However, not everyone has specific seizure triggers.
Keep a diary about how your epilepsy affects you. Make a note of tasks and activities that your epilepsy has stopped you from doing. Examples would be taking a day off work or school following a seizure, being very tired, or having memory problems. Side-effects from epilepsy medicines can also limit activities, so make a note of these too.
Make a note of the time you take your medicines. This can help you and your healthcare professionals see if missed medicines, or taking them at different times could be triggering your seizures. Also, make a note of any medicines you take for other conditions. The Epilepsy app can help you do this.
Make sure you always have an annual review. If you are not regularly seen by an epilepsy specialist make sure you always have an annual review with your GP, practice nurse, or specialist nurse. They will usually arrange a review with you, but if not, you can request one, using our letter.
Go to your review with all the information you have collected about your epilepsy and treatment. Talk to your GP or nurse about your treatment and epilepsy care. Ask them to update your care plan and treatment goals. If you don’t have a care plan, you can get one from Epilepsy Action.
If need be, ask to be referred to an epilepsy specialist. If you are still having seizures, side-effects from your epilepsy medicines, or have any concerns about your epilepsy, ask your GP to refer you for advice. However, your GP doesn’t have to refer you, unless they feel it is in your best interests. You can create a letter to request a referral to a specialist.
Working in partnership with the Royal College of General Practitioners
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