Epilepsy transition - A young person's guide

Why am I coming here?

You are coming here because you are a young person who is:

Transitioning from child epilepsy services to adult epilepsy services
Had a recent seizure and has been referred here by their GP or Accident and Emergency Department
Had an event which potentially could have been a seizure

Can I bring someone with me?

Yes, it is often helpful you attend your first appointment with someone who has seen you have a seizure/event so they can describe it to the doctor.
You can have time during your appointment to speak to the doctor on your own if you want to
Or, you can choose to attend the appointment on your own (it might be helpful if someone witnessing your seizure provided a written account). If you have any additional needs let us know, we may be able to make reasonable adjustments to help you attend your appointment.
Call our Patient Access Centre on: 0151 556 3213 and ask to speak to the Epilepsy Appointment Co-ordinator

What will happen to me at my first visit?

A neurologist will see you (sometimes there can be another doctor or nurse in the room)
They will ask you questions, sometimes about your health in the past
You can ask them questions
You might talk about tests you have had or might need
You might get told you have epilepsy

At the end of your appointment you should have a plan regarding your future care, including:

Medication (Antiepileptic drugs)
When you will be seen next and who by, and what to do if anything changes or you have problems in between appointments.

What happens next?

The doctor will tell you if they want you to have any tests, they can include:

Blood tests
ECG (Electrocardiogram)

An appointment will be made for the following tests:

EG (Electroencephalogram)
MRI (Magnetic Resonance Imaging)
CT (Computed Tomography Scan)

Contact in-between appointments?

Information, patient videos, an animation, leaflets and useful phone numbers including the Nurse Advice Line can be found here
The Epilepsy Nurse Specialist Advice Line reception staff arrange telephone appointments at a convenient time for you. The nurse call may be several days later.

Preparing for appointments

Check out the hospital website for information about what to expect in your appointment, link to google maps for directions to the outpatient departments, as well as information about our healthcare professionals, treatment and care.
We have outpatient departments in to locations, at the Walton Centre main building and in the Sid Watkins department, please check your appointment letter for the location of your clinic.
We offer appointment in person, attending the outpatient department, as a virtual appointment with a video link included in your appointment letter, and also on the phone. Your appointment letter will explain the type of appointment to expect. The hospital website has information about the virtual waiting room.

Your appointment?

Bring a list of your medications or a copy of your prescription.
Prepare your questions, think about what is important for you to know, and don’t be afraid to ask.
Don’t forget we are here to help and support you during transition into adult services.

Your transition journey is unique to you, however you will likely share some common challenges including:

Becoming more independent
Making decisions about your care.

Your GP who has access to your clinic letters to action any recommendations provided by your clinician. Your GP can also contact our on call services on your behalf.

Urgent concerns

Dependent on nature of your concern your GP (and GP out of hours services) can provide help and assistance.
NHS 111 if you urgently need medical help or advice but it's not a lifethreatening situation.
In an emergency and life-threatening situation call 999 for assistance.

Useful contacts/resources:

NHS choices www.nhs.uk
or practical advice our Patient Experience Team can be of assistance (insert webpage link). Alternatively, The Patient Experience Team are available Monday- Friday 9.00 am – 4.00 pm telephoning 0151 556 3090 / 3091 / 3093; or email the Patient Experience Team at wcft.patientexperience@nhs.net
www.epilepsy.org.uk (0808 800 5050)
www.epilepsysociety.org.uk (01494 601 400)
www.youngepilepsy.org.uk (01342 832243)
This leaflet was developed by young people with epilepsy participating in focus groups funded by the Burdett Trust for Nursing
Animations are available about transitioning from child epilepsy services to adult epilepsy services, and also about epilepsy and pregnancy.
www.thebraincharity.org.uk (0151 298 2999)

Find out where you are going

Maps and directions available at: www.thewaltoncentre.nhs.uk

Last Updated:
30 April 2023
Review Date:
30 April 2026
Author:
J Winterbottom
Summary:
Transitioning from child epilepsy services to adult epilepsy services
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