What do you think?

As a part of our commitment to ensure that the forum is a vibrant place where people affected by Parkinson’s can share information and experiences, receive peer support and find friendship, we’ve been thinking through how we can improve the forum.

We’re keen to have members more involved in the forum so we’re opening this thread to start a conversation and get your thoughts and ideas.

How can we get you more involved in the way the forum is run?

Just a note: This is a separate discussion from the functionality of the forum, by this we mean, issues like spell checking, extending the time for latest activity, etc. We hope to look into these issues later in the year.

We’re looking forward to hearing your views!

As a carer I do not have a lot of time to spend on the forum.
Often I miss the start of a particular subject, therefore I'm not sure what's
going on. I think we would be better served with a 24hr time frame.
A lot of the members post during the night when they have difficulty sleeping,
so we end up having two forums, a night one and a day one.
I know I can change to 24hrs but don,t think of it till I can,t understand what
everyone is talking about. By which time I have to log off.


Sorry Azinda
Having read your post again It looks like you did not want to talk about time frames, its a separate issue.

Hi annesel,
Thanks for your message. It actually does help us to understand a bit better why the 12 hour timeframe is difficult for some. Why this has been difficult for users is something that we wouldn't have understood properly without hearing it from you who use the forum regularly. However, functionality is something that we would like to look at later in the year. Changing the functionality of the forum (for example, timeframes)is something that goes to the programme that we're using and its limitations which at this point, we don't have much control over though we are looking at ways to get improvements in.

Just to clarify what we were doing in starting this thread: While we know that the forum is an important resource for many, there have been discussions in the past about the fact that forum users are not as involved as they would like to be. We're attempting to address this by opening up a thread where users can discuss with moderators, what sorts of changes they would like to see in this respect. In the past, moderators have only become involved in conversations on the forum where necessary because this is thought of as your space. However, this is a chance for us all to "sit at the table" and talk about how users can take a greater role in how the forum is run.

We've left the question wide open on purpose to allow for a range of ideas.

We'd like to know what sort of involvement you could see users having in the future. As a new person in the post, it would be great to know what you're thinking.



he above testing was to make sure I was not talking rubbish with the following problem.Its only a difficulty until you get used to it but can something not be done about the following.
When you post your reply you then see it on the thread in question. Then if you press the back button you get to your message box with your post in it. Then if you use the back button to return to the forum, on your way you see the thread you posted on minus your thread - hence multiple postings by the novice under the imporession that their post has not succeeded

Could the policy whereby weblinks are deleted be explained please? Is it just because its easier to have a blanket ban than try and out if someone is pushing their own website. Just wondered.

Hi Ezinda.

Please could we have a proper chat room, where we can indulge in "live" chat, personal messages etc with anyone else who is online at the same time?

As someone who often logs on in the early hours of the morning, it would be lovely to be able to have a chat with any fellow insomniacs!

But for this to work, the list of users who are currently logged on would have to be correct....at the moment it shows that you are still logged on even after you have logged off. I'm sure that this could be easily fixed, though.


Kathy :smile:

Hi Eileenpatricia,

I was doing the same thing....getting back by pushing the "back button", until I realized I only had to hit the "forum home" at the top of the list, right here on the left, top of the screen. That brings you back to home, and shows y ou by scoring around the blog name you just looked at. Then you can continue on. After doing it several times, I remembered to do it each time after that. No problem now thinking that my posting did not go thru. YOur name and posting title will also show up in the right hand list at that time.


Hello all,
Thanks for responding. I was getting a bit worried there.

Eileenpatricia, weblinks are currently not removed as a matter of course from the forum. What are removed automatically are email addresses. There have been some cases on the forum where members wanted to share information but have inadvertently typed in an email address instead of a link.


Addresses which include, "@" or ".co.uk" or ".org", etc will automatically be removed.

Addresses starting with "http://" or "www.", etc will in most cases not be removed.

HOWEVER: If a weblink is inappropriate (for example, if it is spam, if the person who posted is selling something, if the link is to some forbidden thing) it will be removed.

I hope this helps.

Now, a clarification on the original post:

Issues like posting replies, having live chats, having pictures, having personal messages all go to how the forum functions technically. That is something we'll be discussing later in the year.

What we wanted to discuss here is more about the moderation of the forum and getting the users more involved in that.

Many of you are on other forums which operate very differently to this one. For example, users might participate in a welcome committee or they might have have user leaders or there may even be volunteer moderators.

I wanted to get your thoughts and ideas on getting users more involved in the actual moderation of the forum. Do you have ideas on this? Would you like to be more invovled? What sort of ideas do you think might be suitable for our forum?

I hope this makes it a bit more clear but let me know if it doesn't


Having a bit of a think.... (it's a bit hot today so you may have to wait for people to get in the forum.....)

We already have a system in place to report any post that may concern us, for whatever reason. When we do so, there is the opportunity to say why we have reported it. Thankfully, I have hardly used this facility. I don't understand what you mean by having members invovled in the moderation process, any more so than they are at present.

One facility that I would welcome is being able to contact another member without my e amil addres being disclosed. This can be done via private messaging, as it is on other forums that I use.

Hi Nonameme, Thanks. I did know that way round the problem but don't you lose the timeframe you have chosen? I posted the query because I have seen someone do the same posting three times in a row having seen their postings apparently disappear and if you are new to the site paranoia might set in (!!!) if anything like the recent "hooha's" are going on and posts are actually being deleted before we have read them (quite rightly of course or what would be the point of removing them)

HI Eileenpatricia,

Hmmmmm, not sure what you mean by losing the time frame you have chosen. Once you go back on the "forum home" page, it shows your name, the name of the post, plus the time you posted. I did find it confusing at first to figure out just what you do to get to each post/name you wanted to read, but after one or two days I figured it out. I've not done any forums before or since this one, so dont' know how others work. (I am not electronically educated more than doing some basic word processing before this,) and am very "old-fashioned" really prefering to call on the phone, or write letters -yes, long-hand prefer books to tv.....think I was born into the wrong century!


I think the forum is basically a good one.I have always regarded it to be the 'serious' forum and not particularly a place to find friends and solace, though it seems to have given both to many. Problems have arisen at some point in all the forums i have visited over the years and I think perhaps this one has just been a bit unlucky recently.
Moderation seems fine now we know what the recent problems were except I think people should be informed privately why any action such as deletion take place. If more moderators are required then maybe whoever organises the forum could choose a helper from volunteers.

People already have access to administrators and this thread adds a contact point for ideas which is great. I don't think people particularly need to be more involved. Other than that have the courage of your convictions and carry on as you are. Forums have a life of their own and grow on their own as long as the administration is aware of 'the drift'!

(I personally would like to have the option to edit my own posts but i realise that's not what you are asking. However it's this sort of thing I feel people would like to make suggestions about rather than the moderation and philosophy of the forum but that's only my opinion. Good luck.)

Hi Nonnameme + Eileenpatricia.

I read your posts re clicking on the "back" button after posting and I have to say that I wasn't sure what you meant at first! But I suppose it is 4.15am and my brain isn't working properly.....!

There is usually no need to click "back" after you have posted, as long as your post shows up straightaway under the thread that you have posted. After I have posted, I have always clicked on "forum" at the top of the page (under "you are here").....this takes you back to the main forum page.

The only time that it is necessary to click "back" is when you have been timed out because you took too long to type your post. (That has happened to me a few times!) Someone on here suggested a useful trick to use if this happens....just keep clicking "back" as many times as it takes until your original post reappears.

If I am typing a particularly long post, I always type it in a Word document first, then copy and paste it onto the forum....that way I don't get timed out.

Hope this helps.

Kathy :smile:


I know that my previous post is about "technical" stuff and therefore not what you are asking, but I think a lot of people's requests/suggestions for the forum are related to issues like this.

This probably means that the majority of people are happy with the way the forum is run....there are just a few things which need "tweaking". You say that these sort of issues will be looked at later in the year, so we will watch this space!

The only issue which concerns me (of the type which you are asking about) is the way whole threads have sometimes been removed (e.g. the Ali J situation). I know that a lot of people on here were unhappy about that, especially as the "full explanation" by the moderators was removed along with the rest of the thread! (Before some had a chance to read it). We are all adults on here and I have to say that it made me at least feel as though we were being treated like children.

But I suppose that was an unusual situation which will probably (hopefully) not be repeated. I guess the moderators felt that they had no choice under the circumstances.....I don't know what the entire content of the removed thread was, because it was removed before I had the opportunity to read all of it! But from what I can gather, there were a few posts which the moderators deemed offensive, and they also received a few complaints from forum members, so they felt it necessary to remove the whole thread.

I don't know what the answer is, but I guess we have to have some moderation. By and large, the users of this forum are responsible adults who don't need too much "supervision", but occasionally things can get out of hand, as we have seen.....

I'm not a regular member of any other forums, so I don't know how things like this usually work, but the moderation on here doesn't usually seem too excessive.

Keep up the good work!

Kathy :smile:

I spent ages writing a post,took days deciding whether to or not.I felt had a right to have my side listened to,felt frustrated.Couldn't believe soon after posting thread was removed.I wrote how it had effected me,which it had especially over the last few months which I have had a lot of other things going on in my life to.Didn't even get email from admin or moderator,felt like the bad guy.

just how I felt and still feel,
Take Care Dot x

I fully understand that the moderators of this site have to remove posts occasionally, but surely the person who's post has been removed deserves an explanation about why it was deemed unsuitable to be viewed. If this is not done, how do people know what is suitable or not. I left this site for a couple of months not too long ago becasue i disagreed with the heavy handedness of admin and here we are yet again seeing posts removed without any explanation to the author. This is a disgrace, we are all adults and I for one will nort be treated like a child. My guess is that this post will be removed but if it is I will take this matter further because this is not freedom of speech.

Hello all,
Thank you for thinking about the questions we've put here over the past few days.

As I said, we have been looking at a number of moderation issues recently. Among those are the removal of posts. Just to address some of the concerns that we're hearing here:

We do have a policy of informing people who post when we remove their messages. But do remember, in most cases the reasons for removing the post will be sent by private email to the individual involved so the group may not know about the reason.

In very few cases would we not send an email saying why we removed a post. One of these cases is when there are duplicate posts. When we see the same post two or more times on the same thread, we assume that this happened in error and just remove the second post. However, it did happen recently where a forum member posted the same message 5 or 6 times. In that case, we did send a message asking if they needed help using the forum.

Another situation where we did not send out individual messages was the Alij situation. At the point that we removed the thread, there were a number of posts and removing some and leaving others would have been more unfair than removing it all. While we didn't send out individual messages that we'd removed it, we did post an explanation for all to see on the site. We didn't remove it because we thought it was offensive but we removed it because there was a great deal of personal information and controversy around one member. Consider, in the same situation, would you have wanted to be treated the same?

That said, Moderators are human and we make mistakes. The 'contact Moderator' is on the left for a reason. If you feel that your post was removed in error, or unfairly, then write to us. Let us know so we can offer an explanation and work on improving how we do this.