centre of excellence

[Welsh92]

out of interest if I am referred to a centre of excellence what are people’s experiences within the 3 centres? As I believe I’d have to make a choice of which one I’d want to attend.

[Sherlock11]

I have been attending Aintree CoE since 2018. The care I have had from all staff members over the years has been exceptional. The helpline run mainly by Sarah the nurse consultant is your first contact if you need help in between appointments or you just need advice. I have found Sarah always returns my calls really quickly and if needed asks you to attend. As Behcet's is such a rare illness it's great to attend somewhere where everyone understands the condition.

[Welsh92 in reply to Sherlock11]

Thank you so much for your reply. Was you diagnosed before going there?

[Sherlock11 in reply to Welsh92]

Sorry for the delay in answering, I've had surgery for another ongoing problem. I was told for many years and treated for suspected Crohn's disease, from around 1998. I also developed sero- negative RA around the same time. As the years progressed other symptoms appeared not consistent with Crohn's and after discussion one day with my Gp about Behcet's, I asked if it were a possible diagnosis and if I could be referred to Aintree CoE. I was already on mycophenolate, after azathioprine had been stopped due to problems. So the answer is no, I wasn't diagnosed, rather misdiagnosed with Crohn's.