BBS Clinics Service
BBS UK Clinics Ltd (a subsidiary company of BBS UK), together with...
- Great Ormond Street Children’s Hospital (GOSH)
- Guys & St Thomas's Hospital London (GSTT)
- Birmingham Children’s Hospital (BCH)
- Queen Elizabeth Hospital Birmingham (QEH)
...are commissioned by NHS England to provide multi-disciplinary clinics for Bardet-Biedl Syndrome patients.
At each clinic, patients are seen by an Ophthalmologist, Nephrologist, Dietician, Clinical Psychologist, Geneticist, Speech and Language Therapist and Endocrinologist; the aim is to provide a ‘one stop’ annual visit to ensure patients receive specialised and expert attention and management and should bring about a major change in how BBS is managed, with a focus on diagnosis, early intervention, and good health management.
The aims of Bardet-Biedl Syndrome UK within BBS Clinics are:
- To maximise access to NHS-provided services for patients with Bardet-Biedl Syndrome (BBS)
- To provide support for patients affected by BBS and their families.
- To provide information relating to services provided for patients with BBS and relevant health promotion and lifestyle information to maximise the health and life chances of people living with BBS.
Meet the Team
BBS UK Clinic's Support Team
Feedback from the BBS UK Clinic Service
Home Monitoring Equipment
As a result of the Covid-19 pandemic, NHS funding has been secured to provide home testing equipment for those attending the specialist BBS clinics.
This will enable some of the monitoring and tests that are usually done in hospital, for example, blood pressure, weight and height to be done at home. As circumstances surrounding the pandemic improve, face to face clinics will return, however this scheme will continue as it supports the telemedicine service and gives clinicians the opportunity to review results in advance of seeing a patient.
A webinar hosted by professionals and clinicians from the WAAB Community (Wolfram, Alström & Bardet Biedl Syndrome) folllows. This is a useful resource which explains how the scheme works and provides live demonstrations on how to use the equipment.
BBS Clinic Evaluation Forms
As part of our contract with NHS England, we are required to independently evaluate the specialised multi-disciplinary clinics.
We would really appreciate you taking a few minutes to complete a questionnaire about your experience at your most recent clinic. Please click on either the standard clinic or telemedicine clinic links to give your feedback: