LMBBS Clinics

As some of you may be aware, over the past year we have been supporting Professor Beales in his bid for funding to set up designated LMBBS Clinics. The application to the National Commissioning Group was successful and the multi-disciplinary clinics are due to commence in April, 2010. The clinics will be held across four centres, Birmingham Children’s Hospital; University Hospital, Birmingham (adults); Guys Hospital (adults) and Great Ormond Street Hospital for Children. The reason for choosing these two cities is to provide better geographical access combined with existing clinical expertise.

The clinics have been designed to provide a “one stop” annual visit to ensure everyone with LMBBS (BBS), in diagnosis or suspected of LMBBS receives expert attention and management. Those on the LMBB Society mailing list will automatically receive a hospital appointment letter to attend a clinic at one of the above centres some time during the next 18 months. To enable this to happen, a confidential clinics database will be set-up combining LMBB Society members with those already on record at the different hospitals.

We are extremely excited by these developments which should bring about a major difference in how LMBBS is managed, with a focus on early intervention and good health management.  Details of the clinics will feature in all our newsletters and conference reports.

Below are some postive 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 didnt think we would of had any better experience if we had paid privately for it."

"I was very impressed with the professionalism and care given by Chris & Julie at UHB Clinic. The morning ran smoothly and efficiently with all the clinicians and staff friendly and caring. I learned more about the syndrome that morning than I have over the past decade. Well done all."

"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."

 

 

 

 

 

 

 

Other Pages in this section...

• LMBBS clinics