I don't have much time this week (because of that day off work) and I hope there'll be a more complete write-up, but I'd like to post a few observations... and this will probably be my longest ever post anyway! Firstly, it was great to meet so many other patients, with a mixed bag of types of inherited cholesterol problems, including some famous names from this site.
I'm not wild about the venue. It's central London, which doesn't seem like a healthy place, and the chairs were unsupportive and squeaky, not good enough for a 2 hour first session without a tea break. And when the break did come, did anyone else notice the stonkingly greasy plastic-wrapped biscuits with the refreshments? Are the Royal Society of Medicine not into healthy eating?
Anyway, the first session: an intro to cholesterol which creeped me out (I'm very squeamish for someone that has spent nearly three decades as a pin-cushion!), an intro to diagnosis that I found very interesting and explained some of the prodding I've had over the years (I don't have xanthomata) and an intro to HEART UK's background. The Q+A panel was maybe a bit early or not chaired tightly enough, as some questions were more about the subjects of later talks, but I guess that's difficult to control.
The second section was a fascinating quick sweep through each of the diet toolkit (see the link to Ultimate Cholesterol Lowering Plan in a previous comment of mine and you'll get 90% of it I think) and the drug toolkit, as well as a personal statement from someone who seems to have worked through most of the current treatments. I think the Q+A here was a bit annoying and dismissive about drug problems, but that's something many of us have suffered elsewhere, so it's not a surprise.
I was late back into the final session (only a 20 minute break?) but I did hear about some in-development treatments (such as CETP - shame the first trial was aborted because it was making things worse) and then something about the current state of HEART UK. This session seemed to overrun by quite a lot and people had to leave before it finished. After that, I had a bit more of a chat with Aliwally (who doesn't look a bit like her profile picture) and then Boris-biked it back to Paddington, which was less of an extreme sport than I expected and well worth £1.
It was an informative event, but if it was done again, I think I'd like longer, stronger patient presentations, maybe with talk titles and some audio-visual displays. Patients were 70% of the audience, but only 30% of the speakers and maybe 15-20% of the time. There are some fascinating real-life stories among patients, as this site often shows, which it may be good for medics to hear. I think that the professionals should be the majority of the talks because they know the science better, but this felt like a bit too skewed towards them. More time to talk, maybe a round-table session with experts circulating between tables, would be good too.
Don't get me wrong, the patient talks we had were good and I would have loved to hear more about HEART UK's development (from the first talk) and about apherisis (from the second talk) because those are things few patients have directly experienced. I also felt it was a bit unfair to always have the patients in the graveyard slot, as the last talk in the session, when things are more likely to be running late and/or people are itching to get away.
One last practical thing that did occur to me, as a result of seeing a year's spread of magazines on the HEART UK stand, is that it's over a year since I last paid my membership fee and probably that's why I didn't get Cholesterol News. Why didn't anyone ask me to renew? I'll go renew now... but HEART UK must be losing too many members if this is normal. A single line on the address label of my last magazine before expiry would probably have sufficed!