Dear all
I hope you don't mind me interfering, but I was surfing the net, during some research, and I came across my name, and was intrigued to find out what was going on. I came across this correspondence, and hoped I might just straighten out some facts in order to help those of you who feel isolated and abandoned.
I am the regional paediatric endocrinologist in Yorkshire. I worked at Birmingham Children's Hospital for 5 years and then moved to Yorkshire and have been working in Leeds for over 7 years, the first 4 alongside Dr Gary Butler, and the last 3 usually alone, but with occasional support from a trained specialist locum colleague. I am hoping that by the end of April we will have a permanent second colleague. Dr Butler left 3 years ago and is now based in Reading but all the patients in Yorkshire who come through the Leeds department remain under my specialist care.
As regional specialists we all have extensive training in paediatric endocrinology and we are all members of the British Society for Paediatric Endocrinology and Diabetes, and we meet up very regularly at conferences and meetings and keep ourselves up to date with the latest research and developments in all aspects of endocrinology.
As you know CAH presents many challenges for the children who have it, the parents who look after and love them, and the Doctors and Nurses reponsible for ensuring appropriate management. I absolutely agree that each child should be followed up by a specialist team, and you are absolutely entitled to insist on a referral to the local tertiary specialist.
Emma, I don't know who you are, and it is possible that we may already have met, if not in Leeds, then may be in a clinic nearer to you as I do many outreach clinics where I come to your local hospital to save you travelling to Leeds; but if not, please ask your GP to drop me a line and we shall ensure that you are sent an appointment.
Many of us will do what we call "shared care" with many of our patients who live away from the central hospital, and this is when we will see your children less frequently in our own hospital, but will share management with your local hospital paediatrician-we still remain "in-charge", but certain tests and monitoring may be done locally to save the hassle of long travels and waits for you.
I hope you don't mind that I have "hijacked" your message board, but I would like you and any one else out there to have accurate information about our service, and general information about the specialist management of CAH.
