Bardet-Biedl syndrome (BBS) clinics
The BBS clinics are held monthly, during these clinics, patients will be reviewed by a wide range of health care professionals, who form part of the BBS ‘Multi-disciplinary Team’. The health care professionals who review patients will be determined on an individual needs basis. At the appointment patients can expect to be reviewed by relevant clinical specialists who will help to develop an individual plan of care or patients.
Throughout their visit, patients will be encouraged to ask questions.
Epidermolysis bullosa (EB) clinics
To be reviewed by a wide range of health care professionals, who form part of the EB ‘Multi-disciplinary Team’. A full medical history and skin assessment will be undertaken. Patients may be asked to undress so that all of their skin (and not just the area(s) affected) can be examined. During their appointment patients may need to have:
- skin sampling (taking a swab or scraping to look for skin infections)
- skin biopsy (taking a small piece of skin under local anaesthetic).
St.Thomas’ is a teaching hospital, therefore students supervised by qualified staff might be involved in patient care. It is valuable training for students and does not affect the quality of patient treatment in any way. Patient wishes will always be respected and patients will be encouraged to inform the team if they do not want them to be present or involved.
Xeroderma pigmentosum (XP) clinics
The XP service hold separate, monthly clinics for children and adults, and occasional clinics for young adults. During these clinics, patients will be reviewed by a wide range of health care professionals, who form part of the XP ‘Multi-disciplinary Team’. The team consists of:
- consultant dermatologist
- consultant neurologist
- consultant ophthalmologist
- consultant geneticist
- consultant dermatology surgeon
- clinical nurse specialist
- clinical psychologist
- medical photography.
All of the health professionals listed above see patients on the same day within the Rare Diseases Centre. The clinics are held on Fridays and usually last all day (9am–5pm), depending on which health professionals patients need to see. Appointments are held in the morning and last approximately 45 minutes each.
The afternoon is set aside for any further investigations that patients may need, such as skin biopsies, minor skin surgery, blood tests and skin photography. The XP support group attend clinics to offer support and additional advice to patients.