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Webchat online - 6th July 2016 12noon

Posted: 04 Jul 2016 14:31
by sophie
Can't make it to a meeting?
Have MDS questions for a consultant?
Have internet access?

Here is a helpful event for everyone - a simple to use webchat online - organised by UCL Hospital: ... -6th-july/

It is a simple Q&A setup.
6th July 2016 - 12noon till 1pm - for the live action chat.
But don't worry if you can't make it - the entire content of the webchat will stay available for you to read on the UCLH website - anytime you want.

You can submit your questions ahead of time - or send them live as the chat is going on - and even make comments.

If this setup is successful and popular - we will set up further events like this.
Please take part, listen in and post your feedback on this chat folder.
We need to hear from you - to we can plan future services in the most helpful way.

Many thanks everyone!

Re: Webchat online - 6th July 2016 12noon

Posted: 04 Jul 2016 22:47
by petertee
Thanks for this information, it sounds really interesting and I hope it will be a success.

Re: Webchat online - 6th July 2016 12noon

Posted: 07 Jul 2016 18:27
by sophie
Dr Payne had loads of questions - and stayed on way past the 1pm cut-off time.
Great that many of you took part - and submitted questions.
We had a chat with UCLH already - and they will plan more of these about blood cancers - as this topic is generating the biggest audiences.
Have suggested a transplant only webchat, as UCLH has been doing ambulatory BMT's at their Cotton Rooms hospital/hotel for a while.
We'd like to find out more about this - and the advantages for patients.

We are already talking to our webpeople, Open e-commerce, to see how and when we might be able to run our own webchats.
Considering doing some on specific MDS topics - rather than a general MDS webchat.
What do you think?
And what topics would you be most interested in?
Scientific research on MDS?
Clinical trials and new drug treatments?
How is MDS treated in the USA? What are the differences?
Advances in Prognostic tests?
What can genetic mutations tell us about MDS?
Treatment at home?
Transfusion benefits/burden/issues?
Palliative care?
Financial issues - benefits claims?
Carer issues?
Travel Insurance issues?

Please comment and leave your requests on here.
We can only do these webchats if there is genuine and sufficient interest.
Thank you all

Re: Webchat online - 6th July 2016 12noon

Posted: 07 Jul 2016 22:40
by Kes
Hi Sophie,
I think this is a great idea. The time was a bit difficult as I was at work. I think we should do more of these webchats with all sorts of professionals and supporters and even patients. Anything that gets us all talking and spreads more knowledge about MDS is a good thing.
Thanks for promoting it as well as all the other amazing things you do.
I love the new website. You are a star!