Appointments

Neurofibromatosis

This page is for appointments at the neurofibromatosis clinic.

For information about our psychology appointments, please see our psychology service page.

How to get an appointment

Your GP or hospital doctor can refer you.

Changing or cancelling your appointment

Phone: 020 7188 1029

Email: [email protected]

Before your appointment

We suggest you wear loose clothing to your appointment. This can make physical examinations easier. Physical examinations include taking your height, weight and blood pressure.

Please bring:

  • a list of medicines you are taking, including dose
  • the dates and names of hospitals where you have had recent scans
  • names of doctors and hospitals who have seen you before
  • your glasses, if you are booked for an eye test

During your appointment

Your first appointment usually takes 1 to 2 hours.

You may see more than 1 member of our team during your visit.

We'll ask you about your medical history and symptoms. We'll do a general clinical and neurological examination. This includes your:

  • skin
  • bones
  • eyes
  • chest
  • stomach
  • nervous system

We'll ask your permission before doing these examinations.

You may need to have a blood test during your visit.

After your appointment

We'll send a letter to your GP or other relevant medical professionals.

We may refer you:

  • for further assessments and investigations
  • to another healthcare specialist

You can contact our nurse specialists if you need further advice.

Every year neurofibromatosis type 2 (NF2) patients will have a review at our NF2 schwannomatosis clinic.

Last updated: 14 March 2023

Do you have any comments or concerns about your care?

Contact our Patient Advice and Liaison Service (PALS)

Is this page useful?