im so cross this thread all it has done is make more people wonna leave,i was neally one of them ,but now a dear friend who has helped somany people on this forum includin my self when ive bin the lowest of low,has now said enough is enough as well,it flamin gets on my swed,we ment to be keepin people askin more people to join us ,not flamin get rid of more ,and the good kind hearted ones as well
I think it's highlighting the problems on this thread which need to be dealt with.
Enough is enough folks. From what I can see this thread was set up because of a suggestion I made - it was to ask past forum users why they had left - so their experiences could be passed on to PD UK to see if these reasons could be addressed.
There has been a great loss of experience over the last year or two with people leaving the site - people that had previously enriched this forum with their wit, care and knowledge.
If people leave now because of what is happening - that is their choice but how I see it is this is an ideal opportunity for us to get this forum once and for all sorted out. I am hoping that PD UK will grasp this opportunity and this could be a good time for us all to get involved.
It's time to be positive about what is happening so I ask of you all to try and stick with it. And for those that might be wondering what I'm about - I have no hidden agenda with my actions - I just want to try and get this forum back to being welcoming and helpful and I think others do as well.
The Breeze
There has been a great loss of experience over the last year or two with people leaving the site - people that had previously enriched this forum with their wit, care and knowledge.
If people leave now because of what is happening - that is their choice but how I see it is this is an ideal opportunity for us to get this forum once and for all sorted out. I am hoping that PD UK will grasp this opportunity and this could be a good time for us all to get involved.
It's time to be positive about what is happening so I ask of you all to try and stick with it. And for those that might be wondering what I'm about - I have no hidden agenda with my actions - I just want to try and get this forum back to being welcoming and helpful and I think others do as well.
The Breeze
I joined this forum shortly after diagnosis looking for information/support/help etc and hopefully to be able to help others along the way:
All I ever found here was insults, constant confrontation and even hatred - and with a total lack of any 'moderation' whatsoever 
.
IMHO Parkinson's UK should divorce themselves from this forum, which I think does far more to distress newly diagnosed members than to help!
Fortunately I found another site * to which I now regularly contribute which is friendly, offers great support, and is very well moderated
- all the things that this supposedly 'official' forum SHOULD have been!!
* don't ask me to name it - we can do without the spoilers from here trying to wreck that site also.
All I ever found here was insults, constant confrontation and even hatred
- and with a total lack of any 'moderation' whatsoever .IMHO Parkinson's UK should divorce themselves from this forum, which I think does far more to distress newly diagnosed members than to help!
Fortunately I found another site * to which I now regularly contribute which is friendly, offers great support, and is very well moderated
- all the things that this supposedly 'official' forum SHOULD have been!!* don't ask me to name it - we can do without the spoilers from here trying to wreck that site also.
i have just logged on and probabley missed half of whats going on but i can tell you that all this has got to stop Now!
this is certainly not what i joined a forum for but now you have turned the wheel and stopping it will be harder.i will certainly be thinking now wheather to keep posting!
this is certainly not what i joined a forum for but now you have turned the wheel and stopping it will be harder.i will certainly be thinking now wheather to keep posting!
It`s ok, Nick. We know the name of it.
First of all when experiencing distressing symptoms I looked to my GP, who admitted he knew very little about PD.
So I was relieved some 2 years later to be referred to a neurologist
Since I can only get to see the neurologist on average about every 10 months, I was relieved to be referred to the Community Neurological Rehabilitation team.
When they withdrew their services, because I was "doing well" (lack of funding?), I was relieved to be given information about PDUK & from there I found this forum.
Now it seems I must look elsewhere, but it won't be another forum
So I was relieved some 2 years later to be referred to a neurologist
Since I can only get to see the neurologist on average about every 10 months, I was relieved to be referred to the Community Neurological Rehabilitation team.
When they withdrew their services, because I was "doing well" (lack of funding?), I was relieved to be given information about PDUK & from there I found this forum.
Now it seems I must look elsewhere, but it won't be another forum
this is great ant it ,janine dont wont to be here,jennie neither ,angel as well now ab ,allmy friends are goin and its all thanks to this thread and the rotern ones that have made people feel that low that they feel they have to leave or look else wer,thanks puk for ur surport,dunna see the point me hangin around now either cus i got no one to talk to
Ali you have come into the cafe I'll be there waiting for you.
Sorry to mess up your thread but I am trying to keep my friends not lose them.
Yes friends that I shall probably never met. In the short while I have been here people seem to just disappear...
Why can this not be a happy haven for all, we can't all be the same in how we are or react to something or even think the same but you all either have PD or are carers.....
We can't fall out with each other just because he/she does not like what we say or how we say it....
Do you know what if and I sure that there are hacks reading this they would have a field day.
Get a grip and pull together for everyones sake
Radz
Sorry to mess up your thread but I am trying to keep my friends not lose them.
Yes friends that I shall probably never met. In the short while I have been here people seem to just disappear...
Why can this not be a happy haven for all, we can't all be the same in how we are or react to something or even think the same but you all either have PD or are carers.....
We can't fall out with each other just because he/she does not like what we say or how we say it....
Do you know what if and I sure that there are hacks reading this they would have a field day.
Get a grip and pull together for everyones sake
Radz
Nobody should have to leave or look elsewhere for support, that was the point of this thread why people have left or want to leave and to sort out the problems. This forum is for everyone not just a chosen few.
sad to say that all this back stabbing goes on in life and on every forum, [u]we all[/u] do it ,its human nature,so what happens one day is this,its just what is needed ,,to get it out in the open and then start over again with whats left..........for some its a good thing because they realise that there is actually a life away from the pc,but then again some people thrive on this type of interaction ,its all they have ........a screen to vent there anger at ,i was one ,we are all big behind our screens but in real life not so..............
Bravo garyg, you make an excellent point.
There are 3 key issues that in my opinion contribute to the failings of this forum.
The first issue is as garyg highlighted, that of hidden identities. Running this forum as a public forum with usernames ( in some cases multiple usernames) and concealed identies, allows certain people to behave in a way they would not if meeting you face to face. Secondly having moderators who don't understand the complexities of parkinson's disease is not helping matters. Added to this is the fact PUK does not employ anyone living with the condition, thus leading to a situation of, the "blind leading the blind" when it comes to running the forum. Then of course there is parkinson's disease itself, a mixture of mood swings, a degree of anger and frustration at having it, along with a brain in many cases that intellectually still works.
So what's the answer, well firstly make it a members only forum, then maybe PUK should stop treating us as asylum inmates who must be controlled at all costs and start allowing the inmates to run the asylum, or should i say forum!
bluey
There are 3 key issues that in my opinion contribute to the failings of this forum.
The first issue is as garyg highlighted, that of hidden identities. Running this forum as a public forum with usernames ( in some cases multiple usernames) and concealed identies, allows certain people to behave in a way they would not if meeting you face to face. Secondly having moderators who don't understand the complexities of parkinson's disease is not helping matters. Added to this is the fact PUK does not employ anyone living with the condition, thus leading to a situation of, the "blind leading the blind" when it comes to running the forum. Then of course there is parkinson's disease itself, a mixture of mood swings, a degree of anger and frustration at having it, along with a brain in many cases that intellectually still works.
So what's the answer, well firstly make it a members only forum, then maybe PUK should stop treating us as asylum inmates who must be controlled at all costs and start allowing the inmates to run the asylum, or should i say forum!
bluey
I feel its a real shame that what i believe was a thread started with good intentions has caused such a reaction from some. Quite a few of the posts over the last 8 pages have not really been necessary. I think it would have been better for each person who wished to contribute to address the question put forward by Leyther, 'if you are someone who used to post here why did you stop' and then leave it at that. In that way, if the people in charge of the forum were reading the points made and opinion of users, they wouldnt have to pick through a load of irrelevant comments to get there.
It's a good topic and if approached by everyone who uses the forum as a positive thing, could be of value in making PUK a better place for everyone.
I stopped posting mainly due to people starting up new identities and bickering. I felt it was dragging me down. Everyone has off days and that is fine, its easy to press send when you have written something in frustration or anger. The occasional firing back after something upsets you is understandable. What upsets me with this forum is that some people do seem to thrive on continuing to reel others into arguments and slanging matches. Im guilty of having been drawn in a few times myself. It didnt make me feel good about myself.
just reading through all the comments on this thread is draining.
It would be so nice if everyone could be more tolerant and understanding of each other.
Carrot
It's a good topic and if approached by everyone who uses the forum as a positive thing, could be of value in making PUK a better place for everyone.
I stopped posting mainly due to people starting up new identities and bickering. I felt it was dragging me down. Everyone has off days and that is fine, its easy to press send when you have written something in frustration or anger. The occasional firing back after something upsets you is understandable. What upsets me with this forum is that some people do seem to thrive on continuing to reel others into arguments and slanging matches. Im guilty of having been drawn in a few times myself. It didnt make me feel good about myself.
just reading through all the comments on this thread is draining.
It would be so nice if everyone could be more tolerant and understanding of each other.
Carrot
I agree.
(Closest thing I can find to sincerity)
(Closest thing I can find to sincerity)
Personally, I feel that theres nothing wrong with this forum. I dont know what the fuss is about. This whole thread has given those pompous asses up the road a chance to have a rip at us.
Thank you for all the suggestions that you have made over the last few days.
Some of these are demonstrating a range of very different opinions and views of what an ideal forum should be like, so we will not be able to please everybody.
Three areas seem to be of particular concern: The way that the forum is moderated, the functionality of the forum and the behaviour of other forum users.
We will go away and look at these in more detail and come back with ideas for how you can get involved. We have made a number of attempts to get volunteers from the forum community to help us draw up the user guidelines, assist with moderation and to join the Advisory Panel but have not got a large response. I really hope that the energy that people have shown in this discussion will prompt people to come forward.
There seems to be an overwhelming desire for the forum to be a welcoming place where everybody affected by Parkinsonās can come for help and support. You are welcome to continue to share thoughts and discuss these ideas but please do follow the guidelines. These were drawn up by the community to help create a space which is welcoming.
Tim
Forum moderator
Some of these are demonstrating a range of very different opinions and views of what an ideal forum should be like, so we will not be able to please everybody.
Three areas seem to be of particular concern: The way that the forum is moderated, the functionality of the forum and the behaviour of other forum users.
We will go away and look at these in more detail and come back with ideas for how you can get involved. We have made a number of attempts to get volunteers from the forum community to help us draw up the user guidelines, assist with moderation and to join the Advisory Panel but have not got a large response. I really hope that the energy that people have shown in this discussion will prompt people to come forward.
There seems to be an overwhelming desire for the forum to be a welcoming place where everybody affected by Parkinsonās can come for help and support. You are welcome to continue to share thoughts and discuss these ideas but please do follow the guidelines. These were drawn up by the community to help create a space which is welcoming.
Tim
Forum moderator
It is fair to say that I only have a pop at someone if they have made derogatory remarks toward otherss which are totally beyond beyond the bounds of all decency.
I am doing so, because the mod won't tackle the protagonist who gets away with a vile and disparaging comment.
It's only a few short months to Christmas.
I am doing so, because the mod won't tackle the protagonist who gets away with a vile and disparaging comment.
It's only a few short months to Christmas.
Why do I come why do I not.
To post and share info with others,above all to encourage and support others like me with PD
What do I often find animosity and intolerance bullying and more.
My campaign is to live well with PD, to share and encourage in a positive way Here I see frequently attempts to indoctrinate and impose,views and opinions and blatant attempts to exclude contributions and posters who do not comply.I cant see how that benefits someone with PD and most certainly the resultant disrepute has a negative destructive effect on the very important issues presented in this way and effectivley prevents progress.
Vulnerable people want to be uplifted by the information they seek not terrified,education and awareness in all aspects of relevant pharmacology is a need for all patients . There is a difference between making people aware and making people afraid of medication side effects, by doing the latter you are not helping anyone.
Some posters become self appointed administrators/moderators, dominating,controlling making there own rules,[keep out - donāt post here].This is allowed to happen,and no rule appears to exists to restrict or to limit or review excessive postings
The site doesn't appear to have input on a regular scheduled basis[ from a management admin/leader and also Moderators are not very apparent,until they delete posts often inconsistently or without good reason. The content of the forum is of incredible value to all with PD but given the way it is run and controlled PWP appear to offer little of recognised value to the management of the organisation. Wake up listen we live it patients can be advisor's/ experts PWP are capable of much more than raising funds. Dont treat us with such condescention
As it stands little or no organised communication, taking place until something goes wrong and this results in the managements fire engine responses waiting for the eruption is never the best time for action or change
Rebranding.a fresh start,but PWP got left behind.It was an interesting exercise and an expensive one,is the charity now a business Credibility is lost to me the very people,this organisation was set up to help are not included as the valued commodity they are in future planning strategies
To post and share info with others,above all to encourage and support others like me with PD
What do I often find animosity and intolerance bullying and more.
My campaign is to live well with PD, to share and encourage in a positive way Here I see frequently attempts to indoctrinate and impose,views and opinions and blatant attempts to exclude contributions and posters who do not comply.I cant see how that benefits someone with PD and most certainly the resultant disrepute has a negative destructive effect on the very important issues presented in this way and effectivley prevents progress.
Vulnerable people want to be uplifted by the information they seek not terrified,education and awareness in all aspects of relevant pharmacology is a need for all patients . There is a difference between making people aware and making people afraid of medication side effects, by doing the latter you are not helping anyone.
Some posters become self appointed administrators/moderators, dominating,controlling making there own rules,[keep out - donāt post here].This is allowed to happen,and no rule appears to exists to restrict or to limit or review excessive postings
The site doesn't appear to have input on a regular scheduled basis[ from a management admin/leader and also Moderators are not very apparent,until they delete posts often inconsistently or without good reason. The content of the forum is of incredible value to all with PD but given the way it is run and controlled PWP appear to offer little of recognised value to the management of the organisation. Wake up listen we live it patients can be advisor's/ experts PWP are capable of much more than raising funds. Dont treat us with such condescention
As it stands little or no organised communication, taking place until something goes wrong and this results in the managements fire engine responses waiting for the eruption is never the best time for action or change
Rebranding.a fresh start,but PWP got left behind.It was an interesting exercise and an expensive one,is the charity now a business Credibility is lost to me the very people,this organisation was set up to help are not included as the valued commodity they are in future planning strategies
And this is the reason I dont frequent any pd sites anymore and the reason I wont rejoin the parkinsons uk membership....whats wrong with you?
[This post has been edited by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx]
[This post has been edited by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx]
am beginning to agree. some of us obviously just do not fit. shame.