Hi Tim
I am interested in how the Forum Advisory Panel works. I have sent the original postings asking for applications but can’t seem to find out what happened next. Were enough applications received to actually set up this Panel and if so what have they been doing?
With regard to the ideas posted on this thread – have you taken note of them or are you expecting individuals to email them to you as a separate item? Will you let us know of any decisions made in respect to our ideas?
I am finding it hard to believe this forum is read by staff and trustees – because if they had been doing so why hasn’t something been done about the core values of it – so many people have been reading it and then switching off – maybe that is what the staff have been doing???
Can I ask folk to keep posting on here with ideas/ views etc or the depth of feeling (of course I am assuming there is some) will not be shown to us all.
Thanks
Breeze
I used to read and post quite avidly, but found it took up too much of my time. Also, candidly, I got fed up with posting much the same information time and again in reply to new members. A better search engine would allow the new members to tap into past replies rather than repeat earlier queries.
I still dip in occasionally, because the debates are wide-ranging and often quite well-informed. I found the Q&A sessions on specific topics really good.
I do find the bickering that breaks out from time to time tiresome, but have learnt to live with it, because beneath the aggression is usually some emotion and passion.
When I was on the Forum more regularly, the thought that some posters had created multiple identities designed to stir things up was more worrying, and sometimes made me doubt a few of the postings.
Overall, the Forum serves a useful purpose.
I still dip in occasionally, because the debates are wide-ranging and often quite well-informed. I found the Q&A sessions on specific topics really good.
I do find the bickering that breaks out from time to time tiresome, but have learnt to live with it, because beneath the aggression is usually some emotion and passion.
When I was on the Forum more regularly, the thought that some posters had created multiple identities designed to stir things up was more worrying, and sometimes made me doubt a few of the postings.
Overall, the Forum serves a useful purpose.
Hi Breeze
I do actually agree with your comment "I feel that the information available from PDUK should be clearly available on the forum page - a list of terminology - of medication - a quick reference guide." The signposting to hard information on the front page needs to be more explicit. As soon as I had posted that the links were there I remembered that at first (goodness knows why) I had not realised that you could click on the ones at the top. The number of times people have to be urged to try the helpline etc is witness to the fact that people often stumble across the forum and don't always fully realise what they can access from PD UK . It takes time to find one's way about the various forum threads and still you often can't find stuff which you know is there.
I do actually agree with your comment "I feel that the information available from PDUK should be clearly available on the forum page - a list of terminology - of medication - a quick reference guide." The signposting to hard information on the front page needs to be more explicit. As soon as I had posted that the links were there I remembered that at first (goodness knows why) I had not realised that you could click on the ones at the top. The number of times people have to be urged to try the helpline etc is witness to the fact that people often stumble across the forum and don't always fully realise what they can access from PD UK . It takes time to find one's way about the various forum threads and still you often can't find stuff which you know is there.
I don't know what the welcome procedure is when a new member first visits this forum because I joined this forum back in 2007 and its probably changed since then. It would be a good idea to send newbies a welcome email explaining how to use the site and forum to its full potential. Like others, I feel a lot of forum users aren't aware of what this site has to offer ~ it is actually a fantastic site full of very useful information. I often post links to different sources of information throughout this site and most people are very thankful and say they wasn't aware such information is available.
Some people never join and only visit ~ maybe it would be a good idea to put a note at the top of the forum explaining how to use the forum to its full potential. I know there is a top and side menu, however, a lot of people seem to not use these and need visual prompts to do so.
If you click on forum help on the side menu to the left of this page it takes you to a whole page of useful information on how to use this site effectively. It even mentions forum etiquette!!!
http://www.parkinsons.org.uk/default.aspx?page=8686
Some people never join and only visit ~ maybe it would be a good idea to put a note at the top of the forum explaining how to use the forum to its full potential. I know there is a top and side menu, however, a lot of people seem to not use these and need visual prompts to do so.
If you click on forum help on the side menu to the left of this page it takes you to a whole page of useful information on how to use this site effectively. It even mentions forum etiquette!!!
http://www.parkinsons.org.uk/default.aspx?page=8686
Would it encourage forum activity if to view the forum you have to join and login?? Would this stop posts being brought up in goodle search?...Yes this still does happen!!
I also feel a chatroom would discourage arguing and encourage respect and social interaction, a much more friendly forum environment. Do you agree??
I'm off to bed now, night night! x:)
I'm off to bed now, night night! x:)
My opinions are:
The problem with the helpline and the information is that in some cases the information and help is not available because its provided by people who don't have pd and don't understand the situation.
This applies in particular to the DA OCD situation. They have created forms to fill in etc.. and gone through the motions of involving PWP but missed the point entirely.
ie you can have all the procedures and forms you wish but until the person suffering from the ocd problem puts their hand up the ball doesn't start rolling
Identifying and gaining the confidence of sufferers with a view to getting them to seek professional help seems to be something that only someone who has been through it can do at the moment. Suffers tend not to want to divulge their problems to medics at the end of a short consultation when probably accompanied by a spouse / partner.
However, I think we can develop and train the relevant people but this requires discussion etc..
We have tried helping people on PDJ with some success but a bigger impact would be on here. Especially with the links they have to neuros etc.
There are other things that can be dealt with too like timing of meds etc.
Like it or not this is a self medicating illness. We have to work out what's best for us.
We need to have the facility and in some cases the backing of PUK to achieve this.
At the moment it feels like we are a commodity, that we are patronised rather than involved. The PUK is more interested in corporate image and award winning than direct help.
This forum highlights the problem.
I'm sorry to keep having a dig at the moderators but there isn't any moderation to be found. Intimidation and threats by members on anyone who doesn't agree with them are rife, both on the site and through personal messages.
Its not appreciated,by the PUK, how this form of bullying affects pwp otherwise, surely they would have addressed it before now.
Multiple identities are accepted as a matter of course as is constant regurgitation of the same topics for members own reasons rather than to help.
I have written to the moderators asking them to make the OCD issue into a closed topic so that only new information is debated. Answer was its too hard to do.
This situation has been going on since the very start of he forum but in the last 2 years has deteriorated rapidly.
There is supposed to be a forum panel with pwp on it. Does anyone know who they are?
This forum is not a joke to us. To many its a lifeline. It needs to be treated as such.
Leyther
The problem with the helpline and the information is that in some cases the information and help is not available because its provided by people who don't have pd and don't understand the situation.
This applies in particular to the DA OCD situation. They have created forms to fill in etc.. and gone through the motions of involving PWP but missed the point entirely.
ie you can have all the procedures and forms you wish but until the person suffering from the ocd problem puts their hand up the ball doesn't start rolling
Identifying and gaining the confidence of sufferers with a view to getting them to seek professional help seems to be something that only someone who has been through it can do at the moment. Suffers tend not to want to divulge their problems to medics at the end of a short consultation when probably accompanied by a spouse / partner.
However, I think we can develop and train the relevant people but this requires discussion etc..
We have tried helping people on PDJ with some success but a bigger impact would be on here. Especially with the links they have to neuros etc.
There are other things that can be dealt with too like timing of meds etc.
Like it or not this is a self medicating illness. We have to work out what's best for us.
We need to have the facility and in some cases the backing of PUK to achieve this.
At the moment it feels like we are a commodity, that we are patronised rather than involved. The PUK is more interested in corporate image and award winning than direct help.
This forum highlights the problem.
I'm sorry to keep having a dig at the moderators but there isn't any moderation to be found. Intimidation and threats by members on anyone who doesn't agree with them are rife, both on the site and through personal messages.
Its not appreciated,by the PUK, how this form of bullying affects pwp otherwise, surely they would have addressed it before now.
Multiple identities are accepted as a matter of course as is constant regurgitation of the same topics for members own reasons rather than to help.
I have written to the moderators asking them to make the OCD issue into a closed topic so that only new information is debated. Answer was its too hard to do.
This situation has been going on since the very start of he forum but in the last 2 years has deteriorated rapidly.
There is supposed to be a forum panel with pwp on it. Does anyone know who they are?
This forum is not a joke to us. To many its a lifeline. It needs to be treated as such.
Leyther
i would like some thin to be set up about fund raising, not just a thread so it can windle away ,imean a section so it is set up proper by the correct person from puk and keep everyone in touch with wot is actually happinin with money resorces,i for one no when ive fund raised we have to give puk a certain percentage of it for resurch and the rest is then put into our funds for the group to servive ,alot of groups over the country are only kept afloat by donations and people like me donating or doin fund raisin to keep afloat.
Hi
I would like to thank each and every one of you for taking up my offer to put down feelings and suggestions about this forum and the way forward.
I now hope that PD UK will action the solutions suggested or come up with their own to the most common complaints and put into place the great ideas for making the forum an easier, better and safer place to visit.
The Breeze
I would like to thank each and every one of you for taking up my offer to put down feelings and suggestions about this forum and the way forward.
I now hope that PD UK will action the solutions suggested or come up with their own to the most common complaints and put into place the great ideas for making the forum an easier, better and safer place to visit.
The Breeze
I think that the multiple identities problem could be resolved by only permitting full membership to the forum by inserting your PD’UK membership number on the application.
As the forum is an important first point of reference for “newbie’s”
they could be allowed accesses to a limited part of the forum.
Without however, the possibility to post until becoming a full member.
I also think that threads on a particular topic should stay in their place and that members should not be allowed to invade other topics dragging them consequently off topic.
Sadly this is the case with the DA’s thread causing a lot of the problems that are today now being discussed.
I understand that a thread does often go off topic and that it gains if you like a life of its own.
That’s where a moderator’s role comes into play bring order back to the thread.
As for members constantly threatening to leave this appears IMHO
away to gain attention that does not resolve the problems of the forum.
It is clear that of late a situation has arisen which is cause for all members to be concerned.
Now is the time to be untied and all pull together to construct a safer and happier forum for all; be it newbie’s or old members.
This can only come about if we offer constructive view points and are at the same time willing to accept new rules and abide by them.
In not accepting change we are missing an opportunity and IMHO;
risk selling ourselves cheaply.
As members with PD with have an enormous wealth of knowledge and information regarding Parkinson’s but this wealth needs to be used to the best of its possibilities.
As the forum is an important first point of reference for “newbie’s”
they could be allowed accesses to a limited part of the forum.
Without however, the possibility to post until becoming a full member.
I also think that threads on a particular topic should stay in their place and that members should not be allowed to invade other topics dragging them consequently off topic.
Sadly this is the case with the DA’s thread causing a lot of the problems that are today now being discussed.
I understand that a thread does often go off topic and that it gains if you like a life of its own.
That’s where a moderator’s role comes into play bring order back to the thread.
As for members constantly threatening to leave this appears IMHO
away to gain attention that does not resolve the problems of the forum.
It is clear that of late a situation has arisen which is cause for all members to be concerned.
Now is the time to be untied and all pull together to construct a safer and happier forum for all; be it newbie’s or old members.
This can only come about if we offer constructive view points and are at the same time willing to accept new rules and abide by them.
In not accepting change we are missing an opportunity and IMHO;
risk selling ourselves cheaply.
As members with PD with have an enormous wealth of knowledge and information regarding Parkinson’s but this wealth needs to be used to the best of its possibilities.
Where did this story of people having multiple IDs and having conversations with themselves come from?
I know of people who have CHANGED their names in the past, but I've never heard so much as a rumour of anyone running more than one simultaneously.
Whoever introduced this scare tactic should name names (and IDs) or zip it.
I know of people who have CHANGED their names in the past, but I've never heard so much as a rumour of anyone running more than one simultaneously.
Whoever introduced this scare tactic should name names (and IDs) or zip it.
Hi Breeze and all
I joined this forum in August 2008 and at that time found it very useful for getting answers to the numerous questions that i had re PD. I made several friends. Unfortunately, it became apparent that some posters werent genuine. I got to the stage where i didnt trust who was who anymore and so i stopped posting. Persons with and affected by PD need to feel 'safe' to share. I lost faith in this site and up went the barriers again!
I think that there should be some way of verifying that a person is genuine. How you do that i dont know. Profile photos would be helpful, although i do appreciate that some people genuinely prefer to remain anonymous, particularly in the early days of diagnosis of themselves or a loved one when they may not have shared their situation with family, work etc.
I am now a regular poster on another site. There i and others can chat online if we wish to, post photos, music etc aswell as join in healthy discussion and debate re topics to do with PD. Also, on that site, the person that runs it has a face to put to a name. For me that makes a difference.
I still look in on this site from time to time, usually if im researching something in particular eg a drug, alternative therapy that may be of benefit to pwp's. There is a lot of very good information to be found on this forum but it can take a bit of finding.
Best wishes to all
Carrot
I joined this forum in August 2008 and at that time found it very useful for getting answers to the numerous questions that i had re PD. I made several friends. Unfortunately, it became apparent that some posters werent genuine. I got to the stage where i didnt trust who was who anymore and so i stopped posting. Persons with and affected by PD need to feel 'safe' to share. I lost faith in this site and up went the barriers again!
I think that there should be some way of verifying that a person is genuine. How you do that i dont know. Profile photos would be helpful, although i do appreciate that some people genuinely prefer to remain anonymous, particularly in the early days of diagnosis of themselves or a loved one when they may not have shared their situation with family, work etc.
I am now a regular poster on another site. There i and others can chat online if we wish to, post photos, music etc aswell as join in healthy discussion and debate re topics to do with PD. Also, on that site, the person that runs it has a face to put to a name. For me that makes a difference.
I still look in on this site from time to time, usually if im researching something in particular eg a drug, alternative therapy that may be of benefit to pwp's. There is a lot of very good information to be found on this forum but it can take a bit of finding.
Best wishes to all
Carrot
Remarks like 'zip it' are another reason i left. All members should treat each other with respect, whether they gel or not. We all join these sites for advice and support, not to be treated in a rude and derogatory manner.
I rest my case.
All members should treat each other with respect, whether they gel or not. We all join these sites for advice and support, not to be treated in a rude and derogatory manner.I rest my case.
The phrase "zip it" was aimed specifically at whoever is using scare tactics and spreading false rumours.
( post edited)
( post edited)
.
IMHO the best alternative forum is pduk.org/forum, which has many plus points:
1. One-man operator (John), who never censors anything;
2. Normal posting PLUS proper ONLINE chat, which all can use simultaneously;
3. Private online chat rooms;
4. Loads more emoticons;
5. Capability of posting photos;
6. Individual photo of each user against their name (non-compulsory);
7. Content is NOT open to the whole world: only registered members can see in;
8. The owner of any post can amend it or delete it at any time AFTER posting;
9. Post text can be any size, colour or font you like.
.
IMHO the best alternative forum is pduk.org/forum, which has many plus points:
1. One-man operator (John), who never censors anything;
2. Normal posting PLUS proper ONLINE chat, which all can use simultaneously;
3. Private online chat rooms;
4. Loads more emoticons;
5. Capability of posting photos;
6. Individual photo of each user against their name (non-compulsory);
7. Content is NOT open to the whole world: only registered members can see in;
8. The owner of any post can amend it or delete it at any time AFTER posting;
9. Post text can be any size, colour or font you like.
.
Ray, you are behaving like a bully. You don't recognise it. You are very well informed, clever, good with words, kind at times, funny, witty and you even have many good intentions.....but you are sometimes a bully on this forum. You are not the only one, there are others too. It's so sad because you all have so much to give, but it always ends in the same thing....there is only one right opinion, and that's yours. I, too, shall go elsewhere because life is hard enough without inviting in more aggression and unpleasantness. I expect this to open the flood gates of abuse.....maybe I won't read any more. It has made me feel quite ill at times. Shall I post it? ....here goes...
.
All I've done on this thread tonight are:
1. Challenge the myth that some members are operating more than one ID at the same time. I've seen no evidence of this, and no-one seems to be able to name names, so who suggested it in the first place, and why?
2. Suggest an excellent alternative forum which is already up and running and has all the features everyone wants - ESPECIALLY the ability to amend or delete ANY post AFTER submission.
post edited
No-one actually WANTS to move really, though - they'd rather just stay here and have a good whinge.
And they'd certainly never go anywhere suggested by ME!
.
All I've done on this thread tonight are:
1. Challenge the myth that some members are operating more than one ID at the same time. I've seen no evidence of this, and no-one seems to be able to name names, so who suggested it in the first place, and why?
2. Suggest an excellent alternative forum which is already up and running and has all the features everyone wants - ESPECIALLY the ability to amend or delete ANY post AFTER submission.
post edited
No-one actually WANTS to move really, though - they'd rather just stay here and have a good whinge.
And they'd certainly never go anywhere suggested by ME!
.
I wonder why, Ray ??
Quote" 8. The owner of any post can amend it or delete it at any time AFTER posting; "
Unquote
NOT A GOOD IDEA !
Because after the post has been replied to, the original poster can go back and edit thus creating a post/thread totaly out of context. Mischevious members then have field day creating even more confusion followed by arguements.
Here there is a preview button and the post button, once the post button is pressed the only person allowed to edit is the moderator, and thats how it should be
Unquote
NOT A GOOD IDEA !
Because after the post has been replied to, the original poster can go back and edit thus creating a post/thread totaly out of context. Mischevious members then have field day creating even more confusion followed by arguements.
Here there is a preview button and the post button, once the post button is pressed the only person allowed to edit is the moderator, and thats how it should be
I do not want "loads more emotions" from this Forumand I suspect neither do many of the forum users here.I want help and advice and hopefully give some to others when I am able.It is good that there are all kinds of forums, so that those who want"loads more emotions" and virtually no moderation can go to those forums and get what they want.This stops them trying to make all forums the same. This is, after all, a Forum that is the result of membership fees and the efforts of the many who do fund raising.