Author Topic: Forum feedback and suggestions  (Read 22156 times)

Miriam Vered

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Forum feedback and suggestions
« on: October 07, 2014, 11:07:01 am »
Feel free to leave feedback and suggestions here.

patpinchin

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Re: Forum feedback and suggestions
« Reply #1 on: December 14, 2014, 05:22:48 pm »
Feel free to leave feedback and suggestions here.

Really pleased to join this forum. Will be good to join in discussions with all affected in some way by Amyloidosis. Thank-you Miriam. Off we go........ :)
Pat

Mark McConway

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  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Forum feedback and suggestions
« Reply #2 on: December 14, 2014, 06:21:00 pm »
Thanks for the invite Miriam.  My first thoughts are that it might be good to have a very brief guide for people not familiar with the mechanics of an on-line forum.  Eg.  How to go about starting your own thread etc.

I wanted to start off two discussions but wasn't quite sure of the protocol.  Maybe I've rushed past it in my excitement.  Any advice would be good  :)

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #3 on: December 14, 2014, 06:31:15 pm »
Thanks for the invite Miriam.  My first thoughts are that it might be good to have a very brief guide for people not familiar with the mechanics of an on-line forum.  Eg.  How to go about starting your own thread etc.

I wanted to start off two discussions but wasn't quite sure of the protocol.  Maybe I've rushed past it in my excitement.  Any advice would be good  :)

To start a new thread, go to "General Discussions" and click on " new topic".

I've posted general instructions on how to use the forum.
go to "General Discussions" and have a look at my post "How to use the online forum".
I hope this helps.

« Last Edit: December 15, 2014, 09:05:51 am by Miriam Vered »

Mark McConway

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  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Forum feedback and suggestions
« Reply #4 on: December 14, 2014, 07:35:12 pm »
Excellent, thanks - I realised my mistake after posting the comment :)

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #5 on: December 14, 2014, 07:52:17 pm »
Good. I look forwards to seeing your new discussion topics.

Helen33

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  • AL Amyloidosis in kidneys, bones and spleen
Re: Forum feedback and suggestions
« Reply #6 on: December 16, 2014, 11:11:57 pm »
Will there be a clear way of knowing instantly if a member (poster) is a patient, family, friend or carer?
I am so pleased to potentially have online contact with others treading the path that involves Amyloidosis.
Living life with Amyloidosis

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #7 on: December 17, 2014, 06:09:09 am »
Hi Helen,
Interesting question. There isn't any way of knowing right now. Perhaps forum member profiles could include brief info on whether the member is patient or family or friend. Also perhaps a mention of which type of amyloidosis. What do others think about this?

patpinchin

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Re: Forum feedback and suggestions
« Reply #8 on: December 17, 2014, 01:33:05 pm »
Wholeheartedly agree Miriam
Pat

Mark McConway

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  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Forum feedback and suggestions
« Reply #9 on: December 17, 2014, 10:55:35 pm »
Maybe in the short term, would it be an idea to put the type of Amyloidosis that you have (eg AL etc) in brackets beside your username or put (friend) if appropriate?  That way, people would see instantly that you are a patient and the type of Amyloidosis that you have.

Grannie G

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Re: Forum feedback and suggestions
« Reply #10 on: December 17, 2014, 11:10:44 pm »
I agree it would be helpful.

Helen33

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Re: Forum feedback and suggestions
« Reply #11 on: December 17, 2014, 11:42:35 pm »
At the moment the member's name appears and underneath it says "newbie".  Well instead of newbie it could state patient, family or friend.  This is a good space for stating the kind of Amyloidosis as well.  It's better than contained in messages because it will help people to get to know others more quickly as the repetition is always there.  Whereas if contained in messages it would involve remembering and searching out information especially when the forum becomes very active which I am sure it will.

I do think there needs to be little leaflets handed out at the NAC reception (for starters) telling people this forum exists albeit in the very early stages.  At the hospital I attend, until I complained not one person, consultant or specialist nurse,, ever mentioned the word "Amyloidosis".  There was not one reference to it in all the literature. The consultant and specialist nurse kept using the word Myeloma and I kept having to say that I didn't have myeloma, I had AL Amyloidosis.  At one point I was told it didn't matter because myeloma was very similar!!!   I did think to myself "it's no wonder nobody has heard of Amyloidosis if the so-called experts call it something else".

Living life with Amyloidosis

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #12 on: December 18, 2014, 07:36:12 am »
Thanks for the ideas Mark and Helen. I will arrange this as you suggest.

I'm currently working on the next NAC newsletter, which I hope to have ready for printing by January. If we decide that the forum is ready to be opened to all by then, I will  mention it in the newsletter.

Helen, and anyone else who has encountered medical staff who need more information on amyloidosis, please refer them to our NAC patient information website at:
www.amyloidosis.org.uk
I hope you've also seen our patient information leaflets at the NAC that are available as downloadable PDFs at:
http://www.ucl.ac.uk/amyloidosis/nac/patient-info-leaflets
All the NAC newsletters are also available as downloadable PDFs at:
 http://www.ucl.ac.uk/amyloidosis/nac/newsletters
The March 2013 newsletter included an article explaining what AL amyloidosis is - required reading for anyone who tells you that it doesn't matter whether you have AL amyloidosis or myeloma!

Judith

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Re: Forum feedback and suggestions
« Reply #13 on: December 18, 2014, 08:35:11 am »
Miriam thanks for all the hard work involved in setting this up and inviting me to be involved from the start.
I agree that having the type of amyloidosis and if patient friend by the side would be very helpful - if you haven't already lookedtake a look at  myelomabeacon.com where they have this sort of information including year diagnosis and age. I find it helps you to find people who are similar to yourself and follow their posts with interest.
I see from my first post that they have to be approved by a moderator before they appear is that really necessary? Once up and running it could become a huge task and it slows down responses. What I've found useful is in the wee small DEXA hours having quick fire back and forth exchanges on forums much like Facebook. If someone posts something offensive it can be reported and removed and repeat offenders loose access to the forum.

Judith

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Re: Forum feedback and suggestions
« Reply #14 on: December 18, 2014, 09:22:15 am »
It looks like only moderators can create new boards. It would be good to have specific ones for each type of Amyloidosis I was looking to start one on AL Amyloid - what do folk think?