Your xeroderma pigmentosum (XP) appointment

  

Dermatology

 

Xeroderma pigmentosum clinics
Clinic When Location 
Adult xeroderma pigmentosum clinic  2nd Friday of the month 

Rare Disease Centre (PDF 178Kb)
1st floor, staircase B, South Wing, St Thomas' Hospital
Children's xeroderma pigmentosum clinic  4th Friday of the month 

Rare Disease Centre (PDF 178Kb)
1st floor, staircase B, South Wing, St Thomas' Hospital
Young adult xeroderma pigmentosum clinic (transition)   5th Friday of the month (3-4 times per year) 

Rare Disease Centre (PDF 178Kb)
1st floor, staircase B, South Wing, St Thomas' Hospital
Photodermatology clinic (skin only)  Tuesday afternoons  Dermatology outpatients (PDF 40Kb) Ground floor, Bermondsey Wing, Guy's Hospital

  • Cancelling or changing your appointment 

    If you need to change or cancel your appointment, please tell us as soon as possible by calling Sally Turner on 020 7188 6339 for children and Tanya Henshaw on 020 7188 6351 for adults.

  • What do I need to bring?

    • 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.

  • How long will my appointment take? 

    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.

  • Who will I see? 

    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.

  • After your appointment 

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

  • Patient support

    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.