Post-conference blog (week ending 11 July 2010)
Well what a week it’s been! Quite probably, this week has been the busiest and most stressful in the history of the Society, so I thought I’d share what we’ve been up to with you.
I returned from a holiday in Turkey (took my Behçet’s home!) on Wednesday morning following a night flight, which was exhausting. I had just over 2 hours at home to unpack, pack for the conference and get a train down to London. I had been invited to represent the Society and provide a patient's perspective for a Behçet’s disease training day for junior doctors and medical students. They had a comprehensive day planned with experts in every area presenting to them, then me at the end – and I wasn’t sure what time zone I was in!
My talk outlined how difficult obtaining a diagnosis can be, along with the incorrect labels many of our members receive whilst buzzing around the NHS seeing inappropriate doctors. I also described the very mixed emotions on receiving a diagnosis – the relief of having a label and having someone take you seriously, but then the terror of having a rare disease that the medical professionals understand so little about! I also explained the impact the illness has on your relationships, your family and work as well as what the Society can do. This presentation seems to have made quite an impact in bringing the illness to life as many of the attendees came to see me afterwards and many of the speakers at our conference referenced the presentation too.
As Chris and I have been part of the Steering Group for organising the International Conference on Behcet’s Disease, we were invited to the Presidents Dinner on the Wednesday evening prior to the conference opening the day after. This was a great honour and allowed us time to talk to the most influential Behçet’s disease experts from around the world for the evening.
Thursday morning and we were up at the crack of dawn to prepare the room for the conference and the arrival of our 55 attendees representing 7 different countries. I was so relieved when we’d officially opened the conference and got going with the presentations!
The conference went on for a gruelling 3 days – each one was great and had speakers ranging from patients telling their patient journey to professors explaining symptoms and genetics. We had a great range of wonderful speakers and thanks go to everyone who was involved. There were two evening events too with the cocktails and canapés get together on the Thursday evening and the Patient Soiree on the Friday evening, where we presented Dr Colin Barnes with a silver salver in recognition of his work with the Medical Advisory Panel. The AGM was on the final day for 80 people and went without a hiccup thanks to the dedication of the trustees.
As if it wasn’t enough though to be hosting an International Conference and AGM, our bid for Nationally Commissioned Centres was also due in during the conference. With Chris and I engaged with the conference, Kathryn continued to push the bid forward with the medics and their finance managers. This did mean though on Thursday afternoon, Chris and I were called into a meeting with the lead clinicians to finalise the bid and on Friday morning I was up at 6am to have a final read through the document, then spent the lunchtime on the phone talking through my updates whilst running the conference! It has been absolutely manic, but I’m pleased to say the bid was submitted before our deadline – phew!
I’m sure that everyone who attended the conference was exhausted by Saturday evening. I collapsed into bed at around 9pm and didn’t stir until well into the afternoon on Sunday! But would I do it again? Of course! It’s unfortunate that the two biggest events of the Society’s history coincided with the same deadline, but both were hugely important.
We’ll know whether we were successful with the National Commissioning bid during the autumn, but we know from the feedback received that the conference was a great success. Patients came together from around the world and received new insights into their illness, but also had time to form friendships with other patients.
I’d personally like to thank all the patients who attended the conference – I hope I got to speak to all of you and I enjoyed meeting you all. Thanks to our medical speakers for their dedication in this area and for keeping us informed of their progress. Special thanks to Kathryn for her commitment to the National Commissioning bid and to Chris and the team of back stage crew who ensured the conference went smoothly.
Not sure what I’m going to do with myself this week now with these two tasks completed, but I’m sure I won’t be bored! Meanwhile, it’s 8.30pm, so must be time for another sleep before work tomorrow!
