Bardet-Biedl Syndrome UK (BBS UK), together with Great Ormond Street Children’s Hospital, Guys Hospital, London, Birmingham Children’s Hospital and Queen Elizabeth Hospital, Birmingham have been commissioned by NHS England to provide multi-disciplinary clinics for Bardet-Biedl Syndrome patients. At each clinic, patients are seen by an Ophthalmologist, Nephrologist, Dietitian, 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.
BBS UK is an integral member of this valued multi-disciplinary team (MDT) and provides information and support to the patients and their families/carers before, during and after clinics. Its involvement pre-clinic ensures that patients, their families and carers are well informed about the syndrome and feel well supported to attend. BBS UK representatives attend each clinic, offering emotional and practical support to patients and their families and ensure that they are aware of all relevant benefits and social support services. Post clinic they provide ongoing support and liaise between patient and hospital where required and generally provide an ongoing point of contact.
It is recommended that all patients with a suspected diagnosis of BBS should be referred to one of these centres. Such referrals should be addressed to:
Professor Phil Beales
Consultant Clinical Geneticist
Great Ormond Street Children’s Hospital
Great Ormond Street
BBS UK Clinic Support Team
Adults Service: Julie Sales 01892 685311 firstname.lastname@example.org
Children’s Service: Tonia Hymers 07805 685342 email@example.com
Below are some positive comments from patients:
"The clinic and the whole set-up of the day was excellent. Tonia and Julie were most helpful and looked after us very well. All the doctors, nurses, consultants etc were very patient and understanding and took lots of time answering our questions. We really feel that we could not have received better care, thank you."
"It was a long day but so well worth it. Great to see so many specialists on the one visit and everyone was very understanding and patient. - especially the doctors who did the ERG . The nurse who took the blood was excellent to. All day we were treated very well and never rushed and had lots of time to ask questions. On the way home we commented that we didn’t think we would of had any better experience if we had paid privately for it."
"I just want to say a huge thank you to everyone. It was like a breath of fresh air speaking to people who actually care about managing this condition after all the years of being told that there's no point bothering."
"I would just like to say how good the day was for me as a first timer. I nearly didn’t attend as I wondered how it could help me as an older sufferer. But I must admit I’m glad I did attend. and what a good idea having all the doctors and clinicians in one place. I came away with a feeling of satisfaction that maybe some of the things that had happened to me through life so far could be explained."