Your xeroderma pigmentosum (XP) appointment

If you need to change or cancel your appointment, please tell us as soon as possible by calling 020 7188 0847 so that we can offer it to another patient.

• if this is your first time, please bring photographs from an early age as these can help us to assess your skin and how it has changed over time
• glasses (if you normally wear these)
• a list of any current medication you are taking, including prescription medication, medicines you have bought yourself and any alternative medicines, e.g. herbal remedies.
• 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, as tese can help us to assess your child
• details from local clinic/hospital/community appointments, including developmental clinic and hearing tests if available.

Clinic information:

Friday clinics usually last all day (9am – 5pm) depending on which health professionals you need to see. We will discuss this with you before you attend. Appointments are held in the morning and are in 45 minute slots. The afternoon is set aside for any further investigations you or your child may need, such as skin biopsies, minor skin surgery, blood tests and photographing your skin.

Lunch is provided between 12.30 and 1.30pm.

Throughout the day, you are encouraged to ask any questions you might have about xeroderma pigmentosum. You can also meet members of the XP Support Group in the clinic.

Tuesday appointments usually last from 2-3pm, and are normally set aside for new patients needing a diagnostic skin biopsy, or patients who need their skin to be checked.

You can expect to see any or all of the health professionals listed below:

• consultant dermatologist
• consultant neurologist
• consultant ophthalmologist
• consultant geneticist
• clinical psychologist
• clinical nurse specialist

They are all experts in xeroderma pigmentosum and will work together to give you the best care possible.

We will send a letter to you and your local health team summarising your visit.

The XP Support Group aims to help people with xeroderma pigmentosum and other related conditions, and their families.

For more information, visit the XP Support Group website.

See the xeroderma pigmentosum patient leaflets page for a full list of leaflets produced by our department.