Patient initiated follow up (PIFU) for patients with neurological conditions

Information and advice for patients with long-term neurological conditions such as epilepsy and muscular dystrophy.

We have changed the way we provide your care as an outpatient. Instead of having regular, routine appointments according to a timetable, we’ll support you to manage your own care and to 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 that are not answered in this leaflet please speak to your healthcare professional.

You will have ‘open access’ to the clinic for 3 years from the date of your outpatient appointment.

If you are worried you have further problems related to your original appointment during the three years, contact us and a clinician will review your request and offer you a further if appropriate. If you have problems after this time, please contact your GP.

The reason we offer follow up this way is because we want to give you more choice and flexibility and reduce unwanted and unnecessary visits to the hospital. This will help improve patient experience, reduce cost of travel and parking and reduce waiting times for appointments.

You can make a follow up appointment if:

• You have on going 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 support organisations or your GP or local services.

We want to empower you to contact us when you need us.

You can telephone our Central Booking Team on 0300 303 8360 or email bsuh.outpatients.bookingcentre@nhs.net

A member of your clinical team will review your request. They may be able to offer you advice and guidance or decide that you need an appointment. Appointments may be virtual via telephone, video or face to face, if we need to physically examine you. We will send you a confirmation of your appointment.

• If you have an increase in seizure frequency or severity.
• If you have concerns about treatment side effects, dosages or changes.
• If you have been seizure free for a significant time and wish to discuss coming off medication.
•  If you are planning or considering pregnancy or finding out that you are pregnant.
• If you need to discuss something relating to your seizures such as driving, employment or travel.
• For patients with other long term neurological conditions, such as muscular dystrophy, if you have a change in your disability that you need to discuss.