You can ask your GP surgery for an epilepsy review and they will arrange for you to see a doctor or nurse to talk about your epilepsy.
The National Institute for Health and Care Excellence (NICE) guidelines say that:
- adults over the age of 18 should have a yearly review with their GP or an epilepsy specialist
- children and young people under the age of 17 should have a yearly review with a specialist
Reviews may be necessary more often than once a year, depending on individual epilepsy symptoms and personal choice.
If your epilepsy is hard to control or you have seen a specialist previously, you may decide with your GP that you need to see one again for a medication review. You could also think about changing GP practice to one that does epilepsy reviews.
This guide is to help you get the best from your review. If you are a carer for someone with epilepsy – for instance, someone with difficult to control epilepsy, a child, an older person, or someone with learning disabilities – you can read through this information with them.
What is a review?
A review is a meeting with a health professional, such as a doctor or nurse, to focus on your epilepsy. There may be questions you want answered or worries that are bothering you. The person you meet with may also have changes to suggest or questions to raise with you, although you don't have to agree to these.
- the meeting should be convenient – it will be booked in advance at a time that suits you and your health professional; how long it lasts depends on how much there is to talk about
- the meeting is confidential – whoever you talk to, the details will be kept private: you can talk openly and your questions or worries will be listened to; a record of the meeting with details about any changes agreed to will be put in your medical notes so your GP will know what you agreed
Why should I have a review?
A review can help if you have seizures or problems with your medication. Changes to your everyday life or your medication could lead to fewer seizures and side effects.
Even if you feel well and aren't having any seizures, regular review of your epilepsy can help you. A healthy lifestyle and taking the right medication usually means most people with epilepsy can live without seizures. The aim is to enable you to lead as full a life as possible, as well as minimise the risks that seizures and medication can bring.
If there is an urgent problem with your medicine or seizures, don't wait for a review:
- if you have taken too much of any medicine
- if you have an allergic reaction to a new medicine – such as wheezing, a rash, swelling or fainting
- if you notice a possible side effect or any unusual symptoms
- if you notice your health getting worse
In any of these cases, talk to a doctor, nurse or pharmacist straight away.
Who will I talk to?
- a health professional – the person you meet may be a specialist nurse or doctor, a GP, or a specially trained practice nurse
- a good listener – they will be ready to listen to your worries and your questions
- someone you can be open with – you can say whatever you want in these meetings
Don't change your medicines suddenly
Even quite small changes to the amount of medicine you take can affect your epilepsy and put you at an increased risk of seizures. If you take prescribed tablets for epilepsy:
- take them as your doctor prescribed them
- don't change your dose without talking to your doctor
- don't suddenly stop taking your tablets
Ask a doctor, nurse or pharmacist if you have been given new or different tablets that you weren't expecting. That includes different-shaped or different-coloured tablets, or different packaging. There may have been a mistake.
A different make of tablet – even if it contains the same type and quantity of medicine – may affect your epilepsy. You can ask for your tablets by brand name to make sure this does not happen.
If you are worried about the medicines you are taking, see a doctor, nurse or pharmacist before you do anything else.
What will we talk about in the review?
- your seizures and any questions about them
- any questions about your epilepsy
- you can raise any points about living with epilepsy
- for women, questions about contraception and possible pregnancy
- taking your epilepsy medicines and how you're getting on with them – you may wish to discuss any side effects
- you may be worried about being given different tablets – the person you meet will also ask you about your medicine taking
- questions about any other medicines
- you can discuss any worries you have
- you may want to discuss getting the right balance between the side effects of your medicine and seizure control
- you may want to talk about feeling stressed or anxious
How do I ask for a review?
Call your GP surgery and ask for one.
Is there anything else I should ask?
What risks do you run in everyday life? You may want to ask about safety. If a seizure affects your awareness or involves falling without warning, you can be at risk of injury or accident.
You may want to talk about safely taking part in sports or other activities. You can also ask about safer living, bathing, driving and general safety advice.
Do you know what brings on your seizures?
Ask about triggers, as some things may trigger seizures. Common triggers include stress, lack of sleep and forgetting to take your tablets.
Did you know that recreational drugs or too much alcohol may increase the number of seizures you have? Have you been having longer seizures or having them more often? Ask about the new pattern of seizures.
Sometimes people get seizures that last longer than normal, happen more often, or are a different type. This is not very common, but it is important your doctor knows if this has happened to you.
Have you heard people mention SUDEP?
Ask for advice about reducing your risk. SUDEP means "sudden unexpected death in epilepsy". A small number of people die early from SUDEP each year – about 1 for every 1,000 people with epilepsy in the UK, although some people are more at risk.
The better your epilepsy is controlled, the less likely it is that this will happen to you. There's plenty you can do to reduce your risk. The person you meet with can discuss this with you.
Can I talk about how epilepsy affects the rest of my life?
Obviously, there's more to life than taking medicines. You can raise anything about the way epilepsy or your medication affects your life.
- Feeling anxious, frustrated or depressed? People with epilepsy get these feelings just like everybody else, and you can ask for help coping with them.
- Do periods affect your epilepsy? Some women find their seizures are worse around the time of their period. You can discuss this at the meeting.
- Are you pregnant or might you get pregnant? If you want to start a family, you'll need expert advice on medicines. If you are already pregnant, tell the person you have your review with.
- Are you on the pill? The pill can be less reliable when taken with some epilepsy medicines, so it's important to talk about it.
- Lost weight? Gained weight? Medicines can cause weight loss or gain in some people. If you're unhappy, the doctor or nurse may be able to offer a different medicine. Mention any changes to your weight, especially weight loss, because it can also affect the way medicines work.
- Ask about the menopause and hormone replacement therapy (HRT), as these can affect epilepsy. Tell the person you meet with if you have been going through the menopause or are taking HRT. As you get older – and especially if you take more medicines than before – it's possible your epilepsy medicine may need adjusting. You may also be more worried about falling. Mention any of the above when you go for a review.