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Glasgow patient day

Just a quick note of thanks to everyone involved in the patient day yesterday, hugely informative and well organised. Many thanks to the speakers as well for giving up their valuable time, the presentations were perfectly pitched and the breakout sessions really good too. As a patient it is really encouraging to see so much work going on and even better that the specialists in the field of CML are so willing to engage with us.

It was also good to finally meet you Sandy, albeit briefly at lunch, and also Dr Steve o Brien at the end.

Thanks again
Neil

I'd like to add my thanks - I came away tired, but optimistic and aware of how lucky we are to have so many wonderful people on our side in the fight against this disease.
One minor recommendation for next time: it would have been good to have name badges so that we could identify other people we had already been in contact with (in this forum, for example).

Olivia

Just to add also was a great day and great to see everyone look so well! Olivia I agree with the comment with name badges as would have been nice to meet you both. I did speak to someone regarding name badges as well and think just an oversight!
Hope your keeping well
Lynne

Hi Neil and Olivia,

Good to meet up with you too- even though there was not much time to talk.

All in all I thought it was a good meeting although I was not able to get to the breakout sessions, apart from one for carers! just found myself in there and as a patient myself I suppose I shouldn't have been but given my work on here maybe I can wear both hats? I must say though that I left that particular session early as I felt it was a little misdirected- however it might have improved later on so if anyone has any feedback on that session I would be grateful if you can send me your views at cmlsupportgroup@gmail.com

I have been writing a CMLSG newsletter over the last two days, which will include a fairly in depth summary of the day in Glasgow.

I should have it finished by this weekend and will convert it to PDF. If you want a copy then contact me with your email address at the email above.

I am sorry I had to leave rather quickly to catch my train- I would have loved to stay and talk... even to just say hello! I did manage to meet up with a few CMLSg members - Olivia, Neil, David, Nigel, Eilene, Stuart and Tony....hope I haven,t missed anyone out of that list! I also hope that others who obviously were not aware of our existence will now find a way to us.
I was rather surprised that in the presentation slide by one of the support nurses running the carer session, she had not included CMLSg as a point of support and help! I am sure this was just an oversight as she did include Nigel's Facebook page as resource.

Lyndsay: re: name badges, I too was disappointed that the organisers did not provide these from their list of delegates which I did not have access to.

Next time I will make sure that we at least provide them for CMLSg members because it is such a good opportunity to meet face to face. And it certainly would have helped me approach more people to say hello-

I will also ask next years organisers if we can have a slot set aside for sharing the work we do, although that will depend on who is organising it and how they view CMLSg and our more campaigning work (NICE)- a little too adversarial for some I think!

As many of you might not yet be aware, CMLSg are due to start work on the NICE appraisal of bosutinib- which we were informed by NICE last week is due to start very soon. I will say something about this in the Newsletter. I will also update on the upcoming SPIRIT 3 trial as well as the status of the DESTINY trial that Prof. Clark shared at the conference.

Sandy