Xeroderma pigmentosum (XP) service
We offer face-to-face appointments.
Once your referral is accepted, you'll receive an appointment letter with information.
We sometimes offer virtual appointments by video. We'll send you a link and information before your appointment.
How to get an appointment
If you have a confirmed diagnosis of XP, please contact us to attend one of our clinics. Your GP can also refer you.
Changing or cancelling your appointment
Before your appointment
- photographs of yourself from an early age. These can help us assess how your skin has changed over time
- glasses, if you wear any
- a list of medicines you take. This includes prescription medicines, medicines you’ve bought yourself and any alternative medicines
- a list of any questions you may have
If the appointment is for your child, please also bring:
- your child’s health record (red book)
- your child’s school report or records, these help us to assess your child
- details from previous appointments
During your appointment
Your appointment at our Friday clinic usually lasts all day, 9am to 4pm. This depends on which health professionals you need to see. We'll talk about this with you before you attend.
You can expect to see any or all of:
- consultant dermatologist (skin specialist)
- consultant dermatological surgeon (skin surgery specialist)
- consultant neurologist (brain and nervous system specialist)
- consultant ophthalmologist (eye specialist)
- consultant geneticist
- consultant clinical psychologist
- clinical nurse specialist
We hold appointments in the morning. They last 45 minutes each. The afternoon is for any further investigations you or your child may need.
We provide lunch between 12.30pm and 1.30pm.
Throughout the day, we encourage you to ask any questions you might have about XP.
After your appointment
We'll send a letter to you and your local health team summarising your visit. We'll also send a plan for follow up if needed.
Transitioning from child to adult services
At 18 years old your care will move from children's to adult services.
We'll help you feel confident to move over to our adult services. We start by assessing your needs (this can begin as early as 12 years old). An initial questionnaire will help us understand how best to support you.
Last updated: September 2023