National Amyloidosis Centre Patient Forum

Amyloidosis => General Discussions => Topic started by: Miriam Vered on October 07, 2014, 11:07:01 am

Title: Forum feedback and suggestions
Post by: Miriam Vered on October 07, 2014, 11:07:01 am
Feel free to leave feedback and suggestions here.
Title: Re: Forum feedback and suggestions
Post by: patpinchin 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........ :)
Title: Re: Forum feedback and suggestions
Post by: Mark McConway 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  :)
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered 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.

Title: Re: Forum feedback and suggestions
Post by: Mark McConway on December 14, 2014, 07:35:12 pm
Excellent, thanks - I realised my mistake after posting the comment :)
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on December 14, 2014, 07:52:17 pm
Good. I look forwards to seeing your new discussion topics.
Title: Re: Forum feedback and suggestions
Post by: Helen33 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.
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered 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?
Title: Re: Forum feedback and suggestions
Post by: patpinchin on December 17, 2014, 01:33:05 pm
Wholeheartedly agree Miriam
Title: Re: Forum feedback and suggestions
Post by: Mark McConway 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.
Title: Re: Forum feedback and suggestions
Post by: Grannie G on December 17, 2014, 11:10:44 pm
I agree it would be helpful.
Title: Re: Forum feedback and suggestions
Post by: Helen33 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".

Title: Re: Forum feedback and suggestions
Post by: Miriam Vered 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!
Title: Re: Forum feedback and suggestions
Post by: Judith 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.
Title: Re: Forum feedback and suggestions
Post by: Judith 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?
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on December 18, 2014, 11:54:41 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?

Hi Judith, welcome and thanks very much for your excellent suggestions.
When I set up the forum I intended to have boards for each type of amyloidosis.
But after some consideration and discussion, I decided to start off with just have one general discussion board until we get some discussions going and see how the forum progresses.
There may well be topics of shared interest between people with different types of amyloidosis.
Once the forum becomes active and populated, we can reconsider and divide up the existing threads if it seems sensible.
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on December 18, 2014, 12:32:03 pm
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.

Thanks Judith, I'm working on deciding how best to set up the poster profile.

Posts need to be moderated as we don't want inaccurate information appearing on a  forum hosted within the NAC patient information website.
Although I'm trying my best to approve posts as quickly as possible, you're right that this will slow down the speed of exchanges. We'll have to see how the forum develops....
Title: Re: Forum feedback and suggestions
Post by: Judith on December 18, 2014, 07:50:09 pm
Thanks for the explanation Miriam I understand the issues around moderation and it's certainly easier to start with things closed and to open them up than the other way.
Title: Re: Forum feedback and suggestions
Post by: Annone Butler on December 18, 2014, 08:09:26 pm
I'm very pleased to be a member of this Forum. I'm a family member. My husband has AL Amyloidosis which affects his heart. He is treated at the NAC and also has his routine haematology appointments at the Royal Free. He was diagnosed in 2010 and is very well at the moment having had a Stem Cell Transplant in January 2012.
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on December 19, 2014, 01:18:05 pm
Hello Annone, welcome to the forum. I look forward to reading your posts.
Title: Re: Forum feedback and suggestions
Post by: Lesley on January 21, 2015, 07:32:42 pm
Thanks millions Miriam for this. I'm hoping to ' meet' some people I have actually met.
X
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on January 21, 2015, 08:19:05 pm
Hello Lesley,
Welcome! I hope you find the forum helpful. I look forward to hearing from you.
Title: Re: Forum feedback and suggestions
Post by: Lesley on January 21, 2015, 09:00:28 pm
Could there maybe be a link to give donations?

Title: Re: Forum feedback and suggestions
Post by: Lesley on January 21, 2015, 09:05:49 pm
Hi Judith. I think it would be a good idea however I'm guessing whatever type of amy(Loid) you have - you feel the same? Or maybe not? It might end up being isolating if only a few ( or none) respond to one type of Amy.
X
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on January 22, 2015, 07:58:45 am
Could there maybe be a link to give donations?




I just added it in the "Useful Links" thread near the top of the general discussion board.
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on January 22, 2015, 08:00:22 am
Hi Judith. I think it would be a good idea however I'm guessing whatever type of amy(Loid) you have - you feel the same? Or maybe not? It might end up being isolating if only a few ( or none) respond to one type of Amy.
X


Once I see how the forum develops, I'll consider whether to split it up by types of amyloidosis.
Title: Re: Forum feedback and suggestions
Post by: Mark McConway on February 02, 2015, 05:23:48 pm
Hi Miriam,

It's nice to see that the forum is starting to develop and, from what I've read, people are contributing some very valuable posts to it.  Well done on pulling it all together!

I wondered what you and the members thought about creating a section that was purely for information that could help a patient, or her\his family, with practical information, as soon as s\he has been diagnosed with Amyloidosis.  By that, I don't necessarily mean that they are provided with more links to useful sites about the disease (although these could definitely appear there).  I'm thinking more about things like diet.  What foods did people change to eating in order to avoid salt etc.  Another one that springs to mind for me - that I would never really have thought of before my amyloidosis - was the usefulness of an aroma therapy massage.  As my muscles atrophied and my bones became sore - I found lying in bed uncomfortable.  I found a leaflet at my local hospital about a small charity that had therapists who did massages for people with cancer.  As I didn't have cancer per se, I was not entitled to the massages for free but I found them amazingly restorative and would thoroughly recommend them.

I know that many of the posts will have information like this contained within them.  However, I think it would be handy for people to be able to see, immediately, things that would help them at the most frightening stage of their journey. 
Title: Re: Forum feedback and suggestions
Post by: patpinchin on February 02, 2015, 07:00:02 pm
I agree Mark that this would be a very helpful special section. Easily accessible as such.  :)
Good to know that aromatherapy helped you. I watched a youtube video today on neuropathy. The Dr mentioned the many forms of peripheral neuropathy which is common in AL Amyloidosis. In 13 years, only 2 Drs, one of them, Dr Wechalekar at the NAC, have ever described my suffering as chronic nerve hypersensitivity. The Dr in the clip mentioned "over excited nerves" which I assume is the same thing. He talked about a combination of 2 drugs which can help. One of them I already take. It helps only a tiny bit. The Dr said that this drug works on the calcium channels. He said that if this drug helps but does not work well enough, to add in a second drug which "works on the sodium channels which are very involved when nerves are over excited".   I shall be asking my Chronic Pain Consultant about this drug.  Very helpful. This is the clip:  Managing Peripheral Neuropathy https://www.youtube.com/watch?v=v_cqb1LGREs
Title: Re: Forum feedback and suggestions
Post by: ziad_okeil on February 03, 2015, 01:41:04 pm
Very good idea, Miriam. It will help you to continuously improve the forum:

-  I agree with the suggestions of many of the other members that instead of newbie, may be "Patient, carer...etc" should be there.

- also the brief status underneath the name should indicate the type of AMY (AL, AA..etc), diagnosis date, type of treatment if any and the current status (CR, partial response..etc.). This, of course should come from the members themselves.

- I am not sure whether this is technically possible or not, but if you can dedicate a section for all the media, slides and pdf files attached to the posts from the members, it might be of a great help. May be pinned on top of the regular discussions?
We would then have a dedicated and accessible section for all the information exchanged instead of having them scattered among the various posts. But again, I am not sure if this is feasible.

Thanks and keep up the good work


Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on February 03, 2015, 02:14:37 pm
Thank you all for the suggestions. I'll look into the best way of implementing them.


Keep the ideas coming everyone!
Title: Re: Forum feedback and suggestions
Post by: georgeturner on March 02, 2015, 11:14:25 pm
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?

Hi Judith, welcome and thanks very much for your excellent suggestions.
When I set up the forum I intended to have boards for each type of amyloidosis.
But after some consideration and discussion, I decided to start off with just have one general discussion board until we get some discussions going and see how the forum progresses.
There may well be topics of shared interest between people with different types of amyloidosis.
Once the forum becomes active and populated, we can reconsider and divide up the existing threads if it seems sensible.

I think it would be good to have boards for each type of amyloidosis when the forum progresses. It would make it easier for members to get to the areas they are interested in. However, I do think that access to all the boards should be available to all members regardless of type of amyloidosis as so many of the symptoms and much of the information and advice given applies across all types.
Title: Re: Forum feedback and suggestions
Post by: Lesley on March 05, 2015, 04:00:42 pm

Morning All & Miriam


I wonder if its worthwhile sending a generic email to all the people on the forum or not yet registered, just reminding them of this facility we now have and maybe regular reminders/updates generally so it gets people actively involved in using the forum.


Lesley
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on March 05, 2015, 06:44:28 pm

Hi Lesley,

Thanks very much for your suggestion.


I think it's a good idea to send updates about the forum discussions to everyone who has registered. I will start doing this soon.
I agree that it would be nice if a greater variety of people were to participate in the discussions. But I think that the number of views for several topics show that a lot of members read other peoples' posts even though they prefer to "lurk" rather than contributing.
In the meantime, the nurses at the NAC are mentioning the forum to patients in clinic, and the latest NAC newsletter also mentioned it prominently. I may include an article on the forum in the next newsletter as well.
So I hope that gradually we'll get the word out there and get wider participation. But even if not, I definitely think that your posts are helping far more people than just those who respond, so thank you very much for being so active and please keep it up.


Miriam



Title: Re: Forum feedback and suggestions
Post by: patpinchin on March 05, 2015, 07:55:10 pm
I think this will be a very gradual process. Those of us who are in touch with patients who are not participating so far must encourage them and tell them what a great resource this is and how much it is helping others. :)

 I wonder if the NAC nurses also have a brief handout with the link plus a few details to give patients?
This would be a prompt for patients once they arrive home.
 Would it be an idea if the handout also gave an example of a helpful post and reply providing the senders agree?
Title: Re: Forum feedback and suggestions
Post by: Miriam Vered on March 06, 2015, 05:54:31 am
Good idea Pat.
I'll discuss it with the nurses