What to expect and how to prepare
Whether you have epilepsy, or care for someone who does, this document is designed to provide information to help you prepare for your GP or specialist review. Our goal is to put the person with epilepsy at the centre of their care and management.
- Why is a review important?
To make sure that you are receiving the best quality of care, it is important that your epilepsy is kept under review, even if you feel your epilepsy is well controlled. There may be medical or lifestyle issues that could affect your epilepsy and your doctor will need to be kept up-to-date.
- Who will conduct the review?
If you are an adult, your GP surgery should invite you to a review every twelve months, however you may contact your doctor at any time to discuss your epilepsy. Depending on your circumstances, it may be agreed that you are reviewed by a specialist, in which case, your GP can refer you. A specialist may be a neurologist, a doctor with a specialist interest, or a specialist nurse.
Guidelines suggest the following criteria for review with a specialist:
– You are newly diagnosed
– Control of your epilepsy is not as good as it could be
– If you are planning a pregnancy or are pregnant
– If you are considering changes to your medication, or coming off a particular medication
It is recommended that children and young people are reviewed by a specialist. This review should be ‘at least yearly, but may be between three and twelve months, by arrangement.’
- What may be discussed?
Your doctor may ask you whether there has been any change in your seizures, and whether there has been any change in pattern or frequency. If you have been having seizures, they may want you to describe them and identify anything that you think might have been a trigger.
Epilepsy can be a very complex condition and changes in lifestyle such as stress at school/work, bereavements, other health conditions and changes in medication can all have an impact on seizures. The more information you can give the better.
Your doctor may also want to know any medication you are on, and the dose, including anti-epileptic drugs, over-the-counter medications, and any drugs you take for other reasons. If you are experiencing any side effects that you believe may be due to your medication, you should mention this.
If you are a woman of childbearing age, your doctor may discuss the potential effect of pregnancy on your seizures. If you are planning pregnancy, you should be given information on the potential risk to the baby due to certain drugs, and the potential risk to both yourself and the foetus of stopping medication.
Remember, if you become pregnant, whether or not this was planned, you should seek expert medical advice as soon as possible to help you decide what is best to do.
Your doctor may also want to discuss contraception issues. Some AEDs can interact with certain contraceptive methods, for example the Pill. This may make it more likely that you could become pregnant, or make it more likely that you could have a seizure.
What questions should I ask?
You should feel free to discuss any aspect of your epilepsy with your doctor, and to talk about any worries that you have. You may find it helpful to write down any concerns before the appointment. If you feel that your questions or worries have not been answered, you should mention this, and ask for another appointment if necessary. If your doctor cannot answer your questions, they will direct you to another organisation that can help.
Common concerns can include:
– Side effects of drugs
– Driving regulations
– Prognosis, (will I get better or worse as I get older)
– Issues about pregnancy
– Employment and Support
– Education (if you have a child with epilepsy)
– Benefit entitlement
– The possibility of other treatments that may be more effective
– First aid and Safety
– Travelling abroad and insurance
– Support and information from other organisations
- How should I prepare for my review?
There could be several issues that either you or your doctor may want to discuss, and as time is limited in any appointment, you may find it helpful to write down a list of concerns or issues you want to talk about.
If you have had any seizures, it is useful to write down any information, including:
– any possible triggers, (including missed medication)
– what you can remember before, during and after the seizure
– any injuries that you have sustained
– any eyewitness accounts, as detailed as possible
– how frequently you are having seizures
Diagnosis and management of epilepsy is reliant on detailed information given by patients and eyewitnesses. If necessary, you should take someone with you who has witnessed your seizures. This is particularly important if your seizures have changed since your last review.
Your doctor may want to know what medication you are on, and what dose, so you should take your repeat prescription to provide a complete list.
Remember, a review is a chance for you to take a lead in the management of your epilepsy care and to get answers to any questions you may have. No one knows your epilepsy as well as you, so it is important that you can give accurate information, whether in the management of your own epilepsy, or on behalf of a family member.
If you would like any more information or support, please call us on our free, confidential helpline on
0800 228 9016
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