This information explains ways in which you can continue to access support and advice about your health following your epilepsy outpatient appointment. If you have any concerns or questions that are not answered in this leaflet, please speak to the Epilepsy Pathway Coordinator (020 7830 2864) or your GP surgery.

What is patient initiated follow-up?

Patient initiated follow-up (PIFU) puts you in control of your follow-up appointment. Instead of being offered regular visits, you can make an appointment to see us if you have worries or concerns following your consultation. 

You will be given ‘open access’ to the clinic for a period of 24 months from the date of your outpatient appointment, which means that if you are concerned about your epilepsy or your medication, you can contact us and you will receive a remote (telephone / video) or face-to-face consultation within two weeks. 

The reason we offer follow-up this way is because most patients do not benefit from having a regular outpatient follow-up and many patients find the follow-up visits to the hospital cause a lot of anxiety and unnecessary disruption. By offering appointment bookings in this way, we hope to be able to respond to your needs more quickly.

What should I expect?

After your appointment with the consultant or epilepsy nurse, you may not need to have regular scheduled appointments at the hospital. In some specific cases your consultant may book you for further procedures or want to see you in their clinic personally to discuss potential further treatments or tests that you may require. If this is the case, you will already have been told about this and an appointment letter will be sent to you in the post.

When to book an appointment

A follow up appointment can be activated if you have ongoing concerns about your condition if your condition changes significantly beyond that expected or if you require further information or clinical input that cannot be met by your GP. Some examples mightinclude worsening seizures, problems with your antiepileptic medication, a recent diagnosis of a medical condition that might affect your epilepsy, pregnancy or plans to conceive.

How to book an appointment

Please email rf-tr.epilepsyteam@nhs.net stating that you are on the PIFU pathway with a brief outline of your problem leaving your name, date of birth and hospital number. 

If you do not have email access, please contact our epilepsy pathway coordinator on 020 7830 2864. The hospital will send you a confirmation letter with the date and time of the appointment in the post. This ‘open invitation’ is for 24 months following your appointment unless specified otherwise. After this time, please contact your GP for a new referral.

Other support available

Some patients may also wish to be in touch with the following support organisations where 
appropriate:

We are keen to hear your opinions and experiences of Patient Initiated Follow-Up and may contact you in the future. Please let us know if you would not like to be contacted.

The Epilepsy team

  • Dr Rebecca Liu
  • Dr Angus-Leppan
  • Adina Nash (Clinical nurse specialist)
  • Roz Butterworth (pathway navigator).