My views on my first forum in Newcastle. What did you think?

This afternoon I went to my first forum in Newcastle. The format was very much as

I had imagined, with Haemotologist speakers from the locality, and I was pleased that they answered many of my unanswered questions about the drugs and progression of the disorder.

Although there was not a full audience with numbers being fairly low, but I expected this, there was a lively question & answer session at the end of each presentation. This was great ,as you heard other peoples' experiences with drugs, how other people coped with their symptoms and a little about how people had tried to overcome them.

The PPT presentations included data which at times was complicated and I felt I would have loved to have a copy of some of the slides to read where they compared the results of drug trial/use. This was very interesting but hard to digest in a short period.

Maz - you did an excellent speech, entertaining and close to our hearts. Lovely!

There were two periods, during a tea break and at the end, where you could chat to the professionals and other people, which could have been a little longer but overall well worth going to and I would definately go again. Well done everyone!

7 Replies

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  • That sounds great - hopefully there will be one in Scotland some time this year - please. If not, I would consider flying south to attend one. Aime

  • Was there too and enjoyed it. All the speakers were excellent and Maz deserves big congrats for her superb talk and for organizing such an excellent event. I just wish there had been the opportunity for patients to network and chat a little more.

  • Yes, there wasn't enough time for that.

  • Many thanks to Maz for all her organization and hard work and for sharing her experience. I wonder if there is a way to improve patient networking so that if people are happy to share their experiences and chat with others during the tea break then maybe there is a way that this could be flagged up (short of wearing a big badge saying I have ET come and talk to me!!) Having being diagnosed since 2002 I have experience of INF, peg INF, anagrelide and hydrox. and would be happy to talk to others. I managed to speak a bit about my experience with INF when asked by one of the speakers, but maybe next time I may have the courage to stand at the front as Maz did!

  • Thanks everyone for all the lovely comments, I can't the all the credit for organizing the forum, that was Dr Wallis and his team, I just did some of it, it was lovely to see you all there and have a chat with some of you and I'm glad that you enjoyed my talk about myself and my ET. Jenny if you can come to the forums in London we always have break-out groups for each MPD where you can talk about your experiences with others in a smaller group, and there is always either a haematologist or a haematology nurse in the group to answer medical questions, we also wear badges with our name and what MPD we have on it so that makes it easier to approach people, it would also be great if you could give a talk at one of the forums, it really isn't as bad as you think once you get started. Maz.

  • It was my first forum and I found it was most informative and also enjoyable. I too would have liked more opportunity to chat with other 'MPD'ers'. (Maybe we could hire a room, Maz and Jenny and anyone else that wanted to could do a presentation and then oppotunity to network afterwards. Tea and biscuits and chocolate! of course.) Maz thanks for organising it all I'm still chuckling over your lovely talk.

  • hi Ekkles, I like the sound of that, especially the chocolate!!!! Glad you enjoyed my talk. It would be great to meet up with other people just to chat but of course it depends on where everyone is and where they can get to.

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