Following your appointment

We have changed the way we provide your care. Instead of having regular, routine appointments according to a timetable, we’ll support you to manage your own care and contact us only if you have worries or concerns. This is called patient initiated follow up (PIFU).

This leaflet explains how you can access support and advice about your health. If you have any concerns or questions which are not answered, please speak to your healthcare professional.

How does patient initiated follow up work?

You will have ‘open access’ to the clinic for three years from the date of your appointment.

If you are worried you have further problems related to your original appointment during this time, contact us and we will offer you a follow up appointment if appropriate. If you have problems after this time, please contact your GP or consultant neurologist.

Why am I being offered patient initiated follow up?

We want to give you more choice, flexibility and reduce unwanted and unnecessary appointments. This helps improve patient experience, reduce cost of travel and reduce waiting times for appointments.

How can I book an appointment?

You can contact us, when you need us by phone or email, using the details at the end of this leaflet.

When should I contact the service?

Get in touch if you:

• have an increase in seizure frequency or severity
• have concerns about treatment side effects, dosages or changes
• have been seizure free for a significant time and wish to discuss coming off medication
• are planning or considering pregnancy or have found out you are pregnant.

We are not an urgent service. If you need medical help now please contact your GP, NHS 111 or in an emergency, phone 999.

When is a patient initiated follow up appointment not appropriate?

PIFU is not appropriate for conditions or symptoms unrelated to the condition you were originally seen for. In these cases, you will need to contact your GP or NHS 111 for advice.

We are unable to support with requests regarding benefits or travel. You will need to contact your GP. More information is available at www.epilepsy.org.uk or epilepsysociety.org.uk

Frequently asked questions

What if I cannot get through to make an appointment?

If you cannot get through using the phone lines, please leave us a message with your name, date of birth and phone number or contact us via email.

How long will I have to wait for an appointment?

We will be able to let you know the different options available, including waiting times for a phone or video call or a face-to-face appointment.

Could I get lost in the system?

No. You will be recorded as being on the PIFU pathway on our internal systems. If you do not need to see the clinician within three years after your last appointment, you will be discharged back to your GP and consultant neurologist who will refer you to us again if you need care in the future.

Why have you set an end date for me to make an appointment?

Your clinician will decide how long you need to be on the PIFU pathway. It will depend on your condition and their clinical judgement of how long you will need before you can be discharged back to your GP. Our aim is to discharge you once you are well enough.