Appointments
Bardet-Biedl syndrome
Most appointments are face-to-face.
We hold telephone clinics for follow-up care.
How to get an appointment
We accept referrals from:
- the clinical genetics service
- GPs
- ophthalmologists
- other health professionals
We only see people who have genetic confirmation of BBS.
Changing or cancelling your appointment
Please contact the patient liaison officer at BBS UK.
You can also contact the clinic.
Phone: 020 7188 1392
Email: [email protected]
Before your appointment
Please bring:
- most recent and relevant clinical letters, or available test results
- a list of any current medicines you're taking, including
- prescription medicines
- medicines you have bought yourself
- any alternative medicines, such as herbal remedies
We can:
- arrange patient transport
- provide accomodation for you and one other person if you have to travel 2 hours or more to the clinic
Please visit the BBS UK website for more information.
During your appointment
We hold clinics at the Rare Disease Centre at St Thomas' Hospital.
Clinics run on Wednesdays from 9am to 1pm or 1pm to 5pm.
You will come to a morning or afternoon clinic. You will have you own room. During your appointment you may have tests such as blood tests. We will give you a light snack if you need to fast before any tests.
You'll see specialists from a variety of services during the day including:
- genetics
- eye (ophthalmology)
- endocrinology (hormones)
- kidney
- dietetics
- psychology (wellbeing)
- clinical nurse specialist (CNS) or a nurse practitioner
You will also have the chance to speak to a social worker and support worker from BBS UK.
We will create a care plan for you.
We will provide lunch to allow you and your family time to talk with each other or ask any questions to the team.
We will see you every 2 years for routine check-ups. We hold telephone clinics for follow up care between your clinic appointments.
We are a teaching hospital. Visiting doctors and other health professionals may be at your appointment. We will always ask your permission. If you do not want them to be at your appointments, please tell us. This will not affect your care.
After your appointment
We'll send a letter to you and your local health team. It will summarise your visit and advise of any management plan that we have agreed.
You may be able to claim your travel costs back.
