A question I never thought I'd ask but.......

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Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

A question I never thought I'd ask but.......

Post by Rik »

has the KPG forum reached its end as an actual forum?

not as a useful reference for readers.. but as an actual forum..
The KPG website is still a great place to find out about kidney problems and gives amazing information in a useful way.. but the forum?

The last post was in August..
there was once a strong community spirit..
replies.. good and bad.. caring and in some cases inconsiderate.. would come thick and fast..
support was always at the fore.. understanding of others situation at points through kidney failure.. either as a patient or the carer..
helpful.. relevant.. useful.. thoughtful.. funny.. painfully.. inciteful..
always with a sense of being a community and it stretched across many points of the globe..
but now? .....................
Skm
Posts: 66
Joined: Sat Sep 01, 2018 10:13 am

Re: A question I never thought I'd ask but.......

Post by Skm »

Rik,

I have to admit I was wondering the same thing. It’s rather sad. When I originally joined in 2014 there was so much happening. People were so helpful with my dialysis questions and people posting their stories almost felt like old friends. (I would love to know how Jooles and Grey are getting on if you are reading this).

I have no idea why things have died. People must still be developing kidney disease, having lines fitted, starting dialysis, having transplants. Maybe we just answered all the questions :roll: .
I know life moves on but what about the new blood……..

Sue
Transplant May 2015
WightPolly
Posts: 3
Joined: Mon Apr 11, 2022 7:40 am

Re: A question I never thought I'd ask but.......

Post by WightPolly »

Hi Sue and Rik,
I'm Polly and as this is my first posting since I joined last year. I guess you could call me 'new blood'! My reason for not posting? I thought the forum had been put to bed. I even tried to work out if I should do a 'refresh' - thank you renal fog!!
I've trawled through many pages of postings on here and have found some useful information on post transplant life, medications, associated issues etc. But I'd really like to hear how folks are coping (or not) 'now'. I suppose it's a case of trying to regenerate interest and for readers to know that it's OK to post. There's no silly questions and your experiences may be very helpful to someone out there.
Shall I go first?
Skm
Posts: 66
Joined: Sat Sep 01, 2018 10:13 am

Re: A question I never thought I'd ask but.......

Post by Skm »

Polly

Go for it!
Start a new thread. If you need any help just ask.

Sue
Transplant May 2015
Chris Wright
Posts: 138
Joined: Sun Nov 19, 2006 9:21 pm

Re: A question I never thought I'd ask but.......

Post by Chris Wright »

Yep Guys.

Maybe the active members were too small in number.

This is quite active:

https://healthunlocked.com/nkf-kidneytransplant

But seems to be very US orientated.

Not sure i can help with questions about "Medicare"! :D
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: A question I never thought I'd ask but.......

Post by Rik »

Hi Polly and welcome
the forum has been a wonderful source of support and information over the years
and it's such a shame that you wondered if it had been put to bed..

but that's was the whole point of my post in the first place.
106 views of this post.. and they include a number of views from myself to read the replies etc

as a Mod from the original forum and this newer forum when I find it a real shame that the decline of the number of users who read this forum a real shame..
even some Mods haven't signed in for months or even years..
I don't know where it has lost its way and its members who used to want to get involved aren't posting?
Davesw13
Posts: 6
Joined: Mon Nov 14, 2022 5:23 am

Re: A question I never thought I'd ask but.......

Post by Davesw13 »

Thanks for the site Rik, it has some useful info. I’d hoped I’d found somewhere to talk with people in a similar situation, but it seems it is a dead forum, which is a shame.

All the best 👋
Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: A question I never thought I'd ask but.......

Post by Rik »

Davesw13 wrote: Thu Nov 17, 2022 6:00 am Thanks for the site Rik, it has some useful info. I’d hoped I’d found somewhere to talk with people in a similar situation, but it seems it is a dead forum, which is a shame.
All the best 👋
oh.. I'd love to take credit for this forum and the really helpful website too
https://www.kidneypatientguide.org.uk/
but it was set up by this company.. https://www.cogapp.com/work

but you're right
it seems it is a dead forum, which is a shame.
and that's why I am asking a question I never thought I'd ask......
Thumps
Posts: 1303
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: A question I never thought I'd ask but.......

Post by Thumps »

I don't think it's entirely dead, but Covid changed so many things. It's probably harder to find for n00bs than it used to be through search engines, too. I wonder ho wmuch traffic the KPG site itself gets these days?
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: A question I never thought I'd ask but.......

Post by Rik »

Hi Thumps
apologies as I've purposely left replying til now
more to prove my point if nothing else
two other posts since yours which were spam and removed
and 536 views of this post in entirety..
Thumps
Posts: 1303
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: A question I never thought I'd ask but.......

Post by Thumps »

Heh to be honest this is by far the longest surviving PHP Bulletin Board I've *ever* used and I've been admins for quite a few.

I think Covid has had a significant impact on most online fora and social media groups as far as I can tell in my work. Online behaviours have changed.
I guess the question is, a) does the KPG site itself get much traffic, b) do you want to try and rekindle something, or just leave it to be a searchable archive?
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
scout
Posts: 34
Joined: Fri Feb 14, 2020 4:59 pm

Re: A question I never thought I'd ask but.......

Post by scout »

Happy new year to everyone!

I am working at Cogapp, the company who made and maintains the KPG site and forum. We have been quiet recently but we do still maintain and update everything in the background. We updated the site in 2021 to make it more accessible for all users and at the same time also had a major review of the content to ensure that the information is not out of date. The forum has also been updated a few times to make sure the software is up to date.

We have seen a real decline in users accessing the site and forum which can be partly explained by our drop in search engine results which do not show the KPG or only after many other sites. This is something we can work on to a degree from a technical perspective but of course a forum needs to be relevant and used by people to be alive (which in turn also influences search engine results).

So we are wondering what you all think: Does this forum still have value for you and other potential users? My impression from the answers so far is: yes in principle, but it lacks new and active users. If you have any thoughts on how to signpost the site and forum better so that kidney patients can find it and benefit from and contribute to this community, please share them with us.

Happy weekend and looking forward to hearing your thoughts :)
Scout B.
----
KPG team
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: A question I never thought I'd ask but.......

Post by JMan »

I would see it a great shame to see the forum go.

It serves a purpose. In reality not everyone is on social media, for whatever reason. I hate it but use it for work and it acts as a contact tool cos every other bugger is using it! I rarely post on the groups unless I've got a question, or its a current 'hot topic'
I think the forum also isn't as well pointed out to people. Obviously I'd say FB would come up tops in a search, particularly analytic led search engines (most of the top ones that the majority uses.)

There'a also a hell of a lot of competition between platforms/social media outside of TwitBookInsta :) And a lot more moving away from them.

So I hope the forum stays.. Its also a lot easier to search for past posts/info on here than anywhere else
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
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Thumps
Posts: 1303
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: A question I never thought I'd ask but.......

Post by Thumps »

There's nothing wrong with it staying up as a searchable archive for folks that find it. If the cost of keeping it up is low I'd like to do that.

In terms of attracting new participants, I think that really depends on whether the Guide in general is going to be maintained as a resource?
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
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