Hi Everyone,
Just want some feedback from you all on whether there are any additional things you may like to see on the site, or something we could jig to make things work better for you all. If you could have a think and reply to this discussion, we'd really appreciate it.
Thank you,
Smiley :)
If it could link to Facebook as closed group would be awesome and easier.
There is a groups for GPN, ON, and TN on Facebook. I have all three and it is good to have others to relate to. I have had GPN since I was born and needs to be more for others to vent and get questions answered and have more friends that understand. So Facebook link would be awesome.
Better link to "friends" on here - I came off FB as it's very annoying but I do miss having updates from friends or being pinged when a friend has posted?
And also, notification when someone has replied to your post - maybe I'm doing something wrong but it annoys me having to trawl through my posts only to see someone replied ages ago and if I haven't been on the site then I didn't know. So apologies if you thought I was ignoring you!
There needs to be resource folders where we can have one for example Surgeon Details where people can post information on their surgeons. This would make it so much easier as members can just go to that resource folder and do a search for their area, state etc. As often what happens is there will be several different posts asking about surgeons.
Within this resource folder can be a folder dedicated to research journal articles. Another for medications etc. We need to group these categories together for easy access and addition. Then the rest of the forum can be about asking things in general. It may be for more information about something they read in the resources, or just for support in general to connect and communicate.
I also think there needs to be a specific folder for what GPN is, the symptoms experienced, the tests involved for diagnosis, and all known causes, along with surgical and non surgical general information as the first point of call with a link or notation that more information about specific topics can be found here...
Personally I do not think Facebook is the answer as there are many members who do not like, nor use Facebook. I think there already is a group on there from memory. Facebook groups are okay if yoy truly know who your members are. Often scammers join the groups no matter how tight the security is, also it is easier for people to obtain personal information on people. Here people can remain anonymous if they choose and just go by their avatar. Also with a group like this scammers etc., are not really interested as they have to take time to search for health board groups and search for topics.
On Facebook it is all there for all members to see. That is just my thoughts. Everyone will have differing opinions but I use both types of media and can speak from experience that if you have a Facebook one you need to run a very tight ship on it.
I would like to see feedback from members regarding Doctors, currently when I look they all say the same thing - recommend by a member or some such statement.
A link section would be good. It could have links to professional sites like the nih or more personal ones like to the spoon theory.
I’ve been contemplating the idea of a database where members could enter their symptoms and triggers with a way for others to add a tick if they experience the same thing. Exam: Triggers cold food/beverages, singing, speaking, touching under the jaw at the base of the throat. I would enter those into the database. The next person comes along and they only have two of those, but also have two additional triggers -say hot food/beverages, and fizzy drinks. They would add a tick to the ones already on the database and add their own. This would give current members and new someplace to see what others are experiencing. It would be really awesome if you could do a search and see which symptoms, triggers, or symptom-triggers go together.
In the vein of my previous idea, perhaps a database of things people have tried and whether they had success or not. This could be medications, alternative treatments (acupuncture, topical applications, etc), or something mundane (blending all their food so they can eat).
I would like it if there were some way to see how many times people have had surgery and what type. I sometimes see people mention a first surgery. I’m currently in that boat of symptoms coming back after surgery and being told that ‘it doesn’t come back, the surgery fixes it - if it comes back it’s something else’.
I love Kaz’s ideas of Resource folders.
I’m probably in the minority, but I’m one of those people who does not have nor want Facebook. I’d be sad to lose this group if it moved to Facebook. Yes, I would honestly have to think long and hard before joining, even if it meant losing my support group.
Hi Granadam,
If you find the Add reply button when you respond or start a discussion - to the left is an envelop icon which can say either "follow - email me when people reply" or "stop following - don't email me when people reply" If you click on the follow it should email you when ever someone replies.
All the best :)
granadam said:
Better link to "friends" on here - I came off FB as it's very annoying but I do miss having updates from friends or being pinged when a friend has posted?
And also, notification when someone has replied to your post - maybe I'm doing something wrong but it annoys me having to trawl through my posts only to see someone replied ages ago and if I haven't been on the site then I didn't know. So apologies if you thought I was ignoring you!
Rebswebb, we currently have a team looking at Facebook and how best to use it. It is primarily used to let people know we are here at the moment. Thank you for your suggestion. :)
rebswebb said:
There is a groups for GPN, ON, and TN on Facebook. I have all three and it is good to have others to relate to. I have had GPN since I was born and needs to be more for others to vent and get questions answered and have more friends that understand. So Facebook link would be awesome.
Hi Kaz,
Love the idea of the more specific resource folders - If anyone else has any specific folders they would love to see can you post please? Also appreciate your preference not to use FBook. We aim to use multiple channels to make sure folk have an avenue to make contact - Thank you for your comments:)
Kaz said:
There needs to be resource folders where we can have one for example Surgeon Details where people can post information on their surgeons. This would make it so much easier as members can just go to that resource folder and do a search for their area, state etc. As often what happens is there will be several different posts asking about surgeons.
Within this resource folder can be a folder dedicated to research journal articles. Another for medications etc. We need to group these categories together for easy access and addition. Then the rest of the forum can be about asking things in general. It may be for more information about something they read in the resources, or just for support in general to connect and communicate.
I also think there needs to be a specific folder for what GPN is, the symptoms experienced, the tests involved for diagnosis, and all known causes, along with surgical and non surgical general information as the first point of call with a link or notation that more information about specific topics can be found here...
Personally I do not think Facebook is the answer as there are many members who do not like, nor use Facebook. I think there already is a group on there from memory. Facebook groups are okay if yoy truly know who your members are. Often scammers join the groups no matter how tight the security is, also it is easier for people to obtain personal information on people. Here people can remain anonymous if they choose and just go by their avatar. Also with a group like this scammers etc., are not really interested as they have to take time to search for health board groups and search for topics.
On Facebook it is all there for all members to see. That is just my thoughts. Everyone will have differing opinions but I use both types of media and can speak from experience that if you have a Facebook one you need to run a very tight ship on it.
Hi Hmschmom,
We have a doctor's database which everyone very kindly contributed to recently. It does still have lots of gaps geographically, unfortunately. At the moment, the comments are very limited because of the risk of unintentially defaming someone., but those listed have been recommended by other members. I also love the idea of your database - a symptom mapper would be a researcher's delight. Its a great idea. :)
hmschmom said:
I would like to see feedback from members regarding Doctors, currently when I look they all say the same thing - recommend by a member or some such statement.
A link section would be good. It could have links to professional sites like the nih or more personal ones like to the spoon theory.
I've been contemplating the idea of a database where members could enter their symptoms and triggers with a way for others to add a tick if they experience the same thing. Exam: Triggers cold food/beverages, singing, speaking, touching under the jaw at the base of the throat. I would enter those into the database. The next person comes along and they only have two of those, but also have two additional triggers -say hot food/beverages, and fizzy drinks. They would add a tick to the ones already on the database and add their own. This would give current members and new someplace to see what others are experiencing. It would be really awesome if you could do a search and see which symptoms, triggers, or symptom-triggers go together.
In the vein of my previous idea, perhaps a database of things people have tried and whether they had success or not. This could be medications, alternative treatments (acupuncture, topical applications, etc), or something mundane (blending all their food so they can eat).
I would like it if there were some way to see how many times people have had surgery and what type. I sometimes see people mention a first surgery. I'm currently in that boat of symptoms coming back after surgery and being told that 'it doesn't come back, the surgery fixes it - if it comes back it's something else'.
I love Kaz's ideas of Resource folders.
I'm probably in the minority, but I'm one of those people who does not have nor want Facebook. I'd be sad to lose this group if it moved to Facebook. Yes, I would honestly have to think long and hard before joining, even if it meant losing my support group.
I am pretty new here, so I don't have any vastly original ideas of how to improve this place, more being glad it exists at all.
But I did want to echo Hmschmom's suggestions of including a symptoms/triggers/solutions database as pretty much genius. Not sure how hard it would be to implement. I've done my share of programming, but not the website variety.
A database could be especially important as people with this condition likely come and go from this site. Maybe they get a cure with surgery, maybe their meds control it enough they'd rather 'forget' about it some and move on, and maybe if you go hundreds of pages back, you'll find 'forgotten' perspectives of people who were once deep in the thick of it.
A database could really solidify people's experiences. You could have someone cured with a surgery 10 years ago, still here with us helping new users out even though they'd moved on to a pain free life, focusing on the good stuff.
Hi Kuchak, thank you for your input - really glad you've found our community. As a new user are you having any specific challenges in finding information etc. If you could drop me a line it would be really helpful. Thank you :)
Smiley
Thanks everyone for your suggestions so far - keep posting any ideas please, all welcome :)