Medical appointments

4 minute read

Fast facts

1
After being diagnosed with epilepsy, you’re likely to have regular medical appointments, at least for a while
2
Your appointments are an opportunity to ask questions and talk about any concerns
3
You should have a review of your epilepsy at least once a year (more on this below)
4
If you have seizure control and are 18 or over, it’s likely you will get discharged from neurology and be seen by your GP instead
5
A seizure diary is a good way to provide lots of information about your epilepsy at appointments
6
If you have an epilepsy specialist nurse (ESN) they can provide support between appointments

Top tips for appointments

Your appointments are important, but time is often limited so being prepared will help you get the most out them
The more you know about epilepsy, the easier it is to ask questions and understand what could help you
Try to make sure your questions are answered. If there’s not enough time to cover all your questions, ask for another appointment
If you don’t have an epilepsy specialist nurse (ESN) ask your doctor if there is one available
Sometimes you might not think of a question until after your appointment. If you have an ESN, you could try contacting them to ask your question. Or find out who you can contact between appointments
Keep a record of when you make calls and have appointments to help you remember what has happened and when
If other things are affecting you such as low mood, problems with memory, tiredness, concentration or sleep, this may be related to your epilepsy. Talk about it
If you find speaking up for yourself difficult, using an advocate can help. An advocate is someone who can help you with decision making and getting your views across. To find out about advocacy services where you live search online or ask your local council

Top tips for hospital admissions

If you have regular emergency admissions, having a bag packed ready with a change of clothes, and other things you might need can make life easier
Take your epilepsy medicine with you
If you’ll be staying overnight take things with to make it more comfortable – an eye mask, some ear plugs, even your own pillow
Take things with you to help relieve the boredom – books, games, crosswords, music etc
Don’t forget your phone charger
Think of a project you could do if you’re well enough – knitting, writing, research
If you want visitors let people know the visiting hours
If you don’t like the hospital food, ask your family or friends to bring you something
Using WhatsApp or social media lets you update lots of people using one message
If you don’t want lots of people contacting you, ask a family member or friend to field messages

About epilepsy reviews

You should have regular reviews of your epilepsy and treatment. This might be done by your GP, especially if you’re 18 or over and your epilepsy is well-controlled. But there are times when you should have your reviews with your epilepsy doctor, for example:

You’re under 18
You’re still having seizures
You’re having side-effects from your medicine
You’re taking sodium valproate and could get pregnant
You’re pregnant or want to plan to have a baby

Reviews should be at least once a year and for some young people they may be more often, if needed. Your review might be part of a routine appointment. If your doctor is asking how you are and how things are going, make the most of it.

It is your chance to talk about any concerns you have and look at things like:

How often you are having seizures

How you are getting on with your treatment

Whether you have any side-effects

If you’re having any issues or difficulties

Any concerns you have about your wellbeing and an opportunity to talk about things that might help

Read

What should I ask?

If you aren’t sure what to ask at your appointments – here’s some suggestions for questions to ask your doctor

There are more ideas on the NHS website ‘What to ask your doctor‘ page

Do something

Have you got a record of the names and contact details of everyone involved in your care? If not make a note of them in your phone or somewhere where you can find them easily.