Is the forum used to full potential?

61

Hi Casie,

i think you have made a very good point, thankyou.

Ezinda, My initial post was 'is the forum being used to its best potential'......I never said 'is it living up to its full potential'

the latter, I believe suggests I was being confrontational.

The main points I wanted to make initially was :
1. There are over 6000 members but very few are ever online which I think would suggest the forum is underused, which I think that's very sad.
2.  Can we, as a community, make it more inviting, encouraging pwp, their carers, families and friends to use the facility.

You commented 'So, I would turn the question back to you - what are the things that members of this community can do to make things more welcoming here?'.  I believe we are saying the same thing here.  

At no point did I intend to be confrontational or political.

I am happy to discuss the above with anyone via PM, but feel the thread is now deflecting from my original post, which I believe was an innocent comment to encourage discussion and ideas.

i have learned a very valuable lesson and apologise to anyone I have offended, that was never my intention.

ali

x

 

62

Hi Eileenpatricia

I think that a FAQ is  great idea. I had a similar thought yesterday as we often find ourselves posting similar posts over and over. We can just refer to these instead. I think to get it started quickly, I may just put a simple document in the menu with links to posts we've made. I'll try to get this started as soon as possible. 

Thanks

Ezinda

63

Hi Casie

I don't think that your post was confrontational in the least. I think you raise some important issues that I thought it would be great for the community to discuss ie what can we all do differently to improve the experience and make it more welcoming here. 

I'm quite pleased you raised this actually and I hope it will continue. 

Ezinda

64

Using multiple forums to get the features wanted runs the risk of multiple user names and having to post and track threads and replies more dis-jointed than ideal.  The idea of formalising links with any other more featured forum was to address this.  Signposting doesn't mean everyone finds the way.

This forum has the traffic and support I'm looking for so I'd just like to say thank you to all the people who post.  Those that view also help me see what the popular topics are.  

 

65

Posts that members make should NEVER, IMO, be accessible by Google, or any other internet search engine. That is the first major fault of this forum. Members can and have been traced, as I have found out to my cost.That is why I post less than I did on the previous forum. Many members both new and long standing have much to offer with advice but I am deterred from posting because of my posts being accesible on the www. Try and see if   your key words turn up on Google and other search forums; I guarantee you that they will. as will your username.

So, we will never have a chat room, end of, no reason as to why and no further   discussion on the matter allowed,  despite the many requests for this by members.

 I just hope that the thousands of pounds donated by our branch last year, some of which was designated for the area of greatest need by PUK, has not found it's was to funding this sad excuse for a forum that functioned perfectly well before its new incarnation and for which there has been nothing but complaints ever since!

Great thread Alip and one which was long needed BUT has once again been answered by a load of hot air by PUK and we are no further along the road to a  viable forum with all the attributes that other forums have as a matter of course

Admin. is full of ideas and platitudes but no action!

66

One of the most fundamental questions that PUK should ask is............... is this forum user friendly as  far as those with  Parkinsons is concerned???

My OH has Parkinsosn and cannot acces this site because of the many clicks that are involved to actually sign on and then get to the forum. I have asked members of our Parkinson Branch if they use the forum and the answer is NO. OK, many of them are not  computer literate BUT that in itself is a  barrier to accessing the forum

Make it a few steps to join and then one click and you are on the forum and able to respond to posts. Maybe PUK does not realise that motor skills are compromised with P.When you can't even sign your name how in H*ll are you supposed to access this forum???????????

67

Ezinda.... you say.

'Important issues that the community can discuss'

 I think that you have more than enough information on this thread  and on previous threads on the same      subject/forum issues,  to see that further discussion will be fruitless unless major changes are made, as per the request of members. Just more delaying tactics and hoping that your comments will have satisfied us    and  subdued the unrest for the time being............ they haven't.

68

Just an example, I needed to edit some of my previous posts or add   something extra but was timed out!!!!

What hope for a PWP, such as my OH who cannot type as fast as I can? User friendly???

69

Benji, couldn't t agree more.

 

samdog

70

Good Morning Ezinda, sorry for not respoding yesterday bt hadda tough day in hostpital and tough night, so  im ot at my bst by any means today but just have to help you understand how important a chat room could would be.

many of us havedepression, many have sleep problems, some find it a struggle to get through the day let onlone the night, and some even have suicidal thoughts, its just possible that theyy just might cry for help to someelse whose name they are familiar wih sitting the in a chatbox with simliar probs aching to chat to someone but not anyone but someone from within the community,

For these very genuine reasons a chatbox facilty is absoloutely essentail, it could in short save a life.

Please reconsider,

aopologies for spelling but tooday is not my best after and roug night and hospital yesterday

71

Hi benji
Thanks for your message. I’ll try to address those parts of your message that I have not touched on already.
Firstly, though I am answering concerns, I would like to put things in a bit of perspective:

  • We do look at the comments that are made about the website and the forum. And while there are still problems, it is not the case that there have only been complaints. We have had lots of positive comments about both the new forum and the website.
  •  In the last year the forum has had over 1 million page views and there are approximately 9,000 topics. 295 people have logged in the last month. In that month alone, we have had over 91,000 page views.  So, the fact of the matter is that the forum is more than just viable.


Thanks for sharing the thoughts of your branch on using the forum. It would be good to know more about why they may not be using the forum.  We have a digital survey coming up (you may have taken part in one last year). It would be great if you could encourage your branch to take part in that so we have actual data that we can work on.


As far as the steps required to join the forum, there is a balancing act between security and ease of registration. Many of the items that we ask for in the registration process are not required but do help to identify users and build community (like the avatar and profile). 


We’ve put a link to the forum on the front page of our website, so you’ll be happy to know it is just one click to get to the forum.


We are of course aware that motor skills are compromised in Parkinson’s. If your husband is unable to sign his name (and possibly type as well) he might consider using Dragon software as others on the forum do.


On the time allowed to edit posts:  This has been raised before on this forum and this is something that we can change. Right now this is set at 3 minutes after you press ‘post’. We can make it longer but do realise that if we make it 5 minutes for example, others might respond to your post before changes are made.


It would be great to hear from forum members whether  5 minutes make things easier.


It would also be good to hear whether anyone would be interested in the Google meetup I suggested above to discuss making the forum more welcoming.

72

Hi All

Ezinda, having just read your post, do you think it is not right or fair to expect non-clinicians to have the responsibility for picking up on people with suicidal intent, self-harmers or people suffering with depression?

At the same time, it must be imperitive that people with these issues get the help they need but surely the PDUK already have systems in place as to giving the information to the right people who will act in a crisis situation?

I hope you don't wait 5 minutes for us to edit our posts. 4 minutes is a long time but I'm prepared to negotiate on that!!

All the best

Casie

 

73

Hi Casie

I'm sorry but I'm a bit confused about your post. While we do have systems in place to deal with posts that deal with suicidal intent and serious self harm, I don't think I touched on these issues on my previous post. 

Could you help me by clarifying what you meant?

Thanks

Ezinda

74

Hi Ezinda

I think the google hangout is a good idea and would like to attend please.

Could someone perhaps explain how to set up for a video link beforehand.


Casie, with regard to Kyloe's post re any difficult situation online such as potential suicide.
Not a regular occurence but entirely possible, in such circumstances it would probably be best to contact the site owners. If they arent available, speak to an authority such as the samaritans or even the police if you feel it necessary.  

PD can make stressful situations difficult so you can only do your best. Get a family member or friend to help or even someone else on line so you dont feel everything is down to you.

To avoid posting problems; I tend to write them on word or notebook first then copy and paste on to the web page.
 

75

Thanks samdog and well said Kyloe.

Ezinda,

I have said why my OH and other members of our branch can't acess this forum easily, it is NOT user friendly  for PWP, let alone those who are not  computer  savvy. As for our branch members, read my previous comments as to why they cannot do so, therefore you new digital survey will pass them by.

Maybe the positive comments about this forum are from new members who do not know how the old forum  functioned, far better than this one.

295  people logging in in a month!! Frankly that is pathetic use of this forum, less than  30  per day! 9100 page views also tells a similar story, people view but can't be bothered to post because of the rigmarole of accessing the forum, like me.

As for security, there is none; if Dr, B....x can register then so can any others of his ilk, who may pry on the situation of those with Parkinsons. A far more rigorous membership application is needed, least of all some sort of code to apply when joining that ensures that you are not a bot. 

As for the edit time, it could be increased, but even 5 minutes is not enough on a long post which  you review before posting but other forums have a system which tell you that another post has been made in the interim and that, in view of that, you may whish to amend your post; all basic stuff on most forums but not on here.

My comment on posts being accesed by an internet search engine, which, IMO is not acceptable,when some members open their hearts on here so the world can view their posts, is why a chat room is a necessity, not an indulgence, a must have.

Glad to see that you recognise, after all this time, that there are stll problems associated with the forum. Could you give an indiaction on when, if ever, these will be resolved?

I will look into the software that you mention and evaluate it and get back to you with my comments on its ease of use for PWP.

76

Benji  (and anyone else interested)

Are you going to put your name down for the Google hangout?

 

77

Benji

You mention a forum member who has the condition and has every right to be a part of this forum. If you feel that someone isn't following the rules, do let us know but please don't attack them publicly. 

Please refer to my posts in this thread for more information on how we would like to deal with the problems raised. 

Leyther

Thanks for your interest. If others are interested too, I can investigate the hangout and share further instructions.

Thanks

Ezinda

78

just awake and once ome mbilty is restored will post more in the meantime please include me as being available for handout.

BTW itried the soppot no at 130 am this morning just to test whats on offer, which wasnst much.

BUT ....Fed was online and he's a very familiar name and helpfull caring guy and if i had felt suicidal or depresssd i would've chatted to him in a chatroom if the facility was available !!

jUst one example of how valuable an asset a chatroom would be.

79

Editing time ?

JUst leave the option open that one can edit thier original post at any time, like most forums allow you to do.

the forum software then displays the post has beed edited and and what time.

so eazy to resolve .....

80

Hi Ezinda

Sorry to take so long to reply to your post.  I keep trying but then pressing the wrong button on my computer and losing all  that I had just written.

I really did get the "wrong end of the stick" about the posts I had just read.  I  believed they were saying that you could open up a chatroom where people were able to talk about suicidal thoughts etc and you would check the posts and report anything you found amiss.

On reading the posts again, I realised how I'd not understood properly what they were saying. 

Thanks for pointing this out to me.

All the best

Casie