I accept your explanation and thank you for taking the time to reply.
I do understand the forum is a valuable resource and agree it should be open to everyone.
I still believe that if joining the forum prevents anyone from reading conversations on google searches it is worth it.
A" guest" would only have to provide an email address and give their name to access the site as a member. The "guests" when joining maintain the right to block private messages and not post messages.
My personal view remains unchanged. The slight inconvenience of a person wishing to gain information having to provide a few details to gain "read only" status is outweighed by the safety of posts being made public on google searches.
Every member has the right to block private messages and choose not to join in any conversations.
The results on a google search whilst amusing are often out of context with the question asked.
I am assuming if everyone was a member, posts remain private, no google search ?
PD UK could make it clear to people accessing the site that they can explore the site on a "read only" basis and this should not act as a deterrent to those seeking support, but would protect members privacy.
I think I have thrashed this issue to death now. I ask that further consideration be given to the issue of privacy, its not all about identity its credibility.
I put a drug name in the google search engine and got one of my own ridiculous posts quoted back at me ! I am convinced out of context as one post, as the saying goes neither use or ornament to anyone.
I am so sorry, forgot to challenge the comment made about it being important to let people see what the site is like before joining ? Why, its not like joining a gym and paying a years subscription and not using it ?
PD uk could address both issues maintain privacy, allow people to join and if not for them, delete their accounts.
I agree TeeHee with all you have brought into this conversation, at first I did not know or realise this was happening on the forum, and I for one do not agree about what is happening. Well said!
I've been a member of this forum for 9 years this month and the one thing I've learnt over those years is ...........be very mindful of what you write.
There are lots of unscrupulous vermin that are trawling the Internet forums gaining intimate and sometimes very revealing information about all sorts of vulnerable people.
PwP's often open up their souls on this forum not realising that all and sundry can read it!
As Joanne said, the forum is a public place and can be seen by others browsing the internet. We advise you not to include any information that might identify you when you post on the forum for this reason.
Not everyone will join the forum without getting to know the place first, some people don't feel comfortable and we understand how difficult it can be for some to reach out. It's a public place to ask for advice, share information, join in discussions and feel supported. If that means that someone just wants to read through threads and take advice, then they are free to do so.
Most forums are public unless otherwise stated, so bear this in mind if you use any others.
If there are things you'd like to discuss privately you can use the private messaging system or talk in the social forum. And as always, if you feel that something poses a security risk, just let us know!
Thank you for clarification, I understand that posts are available in the public domain please would you make this clear to all members.
I do not think it is sufficient just to say do not put your name or email address on the site.
Has PDUK done any research on whether providing a name and email address would actually stop anyone seeking information from the forum members? Have they considered public access to professional advice being public and non professional members forum being private?
This does not require an answer as duplicate statements have been given but no one has evidenced to me why members cannot be protected just seems to revolve around an assumption that people seeking information will not be willing to give an email address or name to PDUK.
I assume people who state they are nervous of joining a forum may mean getting involved in posting, taking an active role.
I assume people are not nervous of joining and just reading posts.
Has PDUK done any research on why people are nervous and prefer to in your words look around the forum first "as guests" it may be that fear stems from not wanting their posts plastered around the world.
AAH BET YARRA REET HEED BANGER WEN SUMBUDDY XSES YI LITTLE TEE HEE, A WOZ GANNA TRY IND SMOGGLE,, (( SAME AS SMUGGLE BUT DONE ONLY IN THHICK FOG )) ONE OF MY SINGLE MALT VARY RARYEEY SCARY, BOTTLES THE ITEM IN QUESTION IS WORTH £123.63P AND IS ONE OF THE LEAST EXPENSIVE ,I HAVE OVER 150 BOTTLES IN THE LOFT AT OUR HOME BUT DONT TELL ANYONE AS THEY ARE BETTER THAN GOLD FOR INCREASING IN VALUE I PURCHASED SAID HAAPY JUICE 30YRS SIN FOR £18.46P SO THE RETURN IS PRETTY GOOD EH ESPECIALY AS i BOUGHT A SOLID HARDWOOD, REDWOOD DEADWOOD TRAIN IS COMMIN ON OVER THE HILL 12 TO A BOXX ,,SORRY SORRY I JUST LOVE SINGLE MALT, THOUGH i CANNOT DRINK THE LARGE GLASS TUMBLER AND ICE SELF MEDICATION ,,OH YES STRICTLY MEDICAL USE ONLY BUT IT IS OF IMPORTANCE THAT I SHOULD TELL YOU MY FRIEND THAT I VOWED NOT TO OPEN ANY OF MY BOTTLES ON PAIN OF DEATH, OR A VERY VERY VERY VERY VERY VERY VERY VERY SPECIAL OCCASION AND SURELY THIS IS SUCH A MOMENT, THE MEETING OF FRIENDS FROM ALMOST OPPOSITE SIDES OF THE WORLD AND FOR THAT I WILL CRACK OPEN THIS FINEST OF ISLA PURE SCOTCH BUT DONT LET JANICE KNOW AS I WONT IT TO BE A SURPRRISE.
I would still like to know why a Google search of a word or phrase brings up posts by members? It has happened to me.
I assumed that any forum owns the copyright of post made on that forum,(I have been told this by Admin. of another forum that I use), and, as such, if Google are just accessing the forum to swell their search results, then they are in breach of copyright.
I would really appreciate it if my posts can be shown on media so that more people become aware of the difficulties that PD sufferers and the people who care for them are faced with on a daily 24/7 basis.
You have set up your own pages to do Just that, If i wished to do that I would, but I appreciate the Choice not to have my thoughts Broadcast beyond the realms of where & whom it was intended to be heard By those who may not have our best interests at heart because those such people do actually exist.
Just found this. It would be interesting to know where the T&C's of this forum can be found.
On the one hand:
Copyright is the automatic right of the creator from the point that the first 'recorded' the work in a tangible manner. In this case, from the point you type it in on the keyboard. So this would mean that as the 'creator' of the post, you are the copyright owner.
However....
In posting on the forum, you will have accepted the terms that this type of publication implies. In posting you are accepting that your content will be published by the site owner, and also that the site owner has the right to edit or delete your post as he sees fit.
Apologies for the delay in getting back to you! The forum rules can be found here. Our website, including our forum, is public and so everything that is posted here and on the rest of the website can be found on search engines.
This means that people searching for Parkinson's, Parkinson's symptoms or our events will be able to find the right information about them on our website and resources to help them. This will also be the case when people are searching for information about a particular topic when there is information about it in a forum post.
We're happy for the results to show up on the search engines so people can find information and support when they need it. A lot of people won't have heard about Parkinson's UK or what we offer so it's important for them to be able to find us! Our website content is protected by copyright laws and there's more information about this in our website terms and conditions. The search engines are linking to the website content, rather than reproducing it illegally.
If there's any posts in particular you are concerned about showing up on search engines, please do let us know.
I would urge members to read the,'web site terms and conditions,' highlighted in blue above and particularly the section on,' Copyright'. I am none the wiser................'our website is protected by copyright laws,' as in the post above, and then, 'the search engines are linking to the website content, rather than reproducing it illegally.' Surely copyright is just that and that highlighted section says that permission must be sought before using the material.
Seems contradictory to me.
I understand that PUK needs and wants a high profile when people Google but why are our posts not sancrosanct and copyrighted. You contradict yourself Joanne by saying with one hand that the PUK website content is protected by copyright laws and then saying that the search engines are linking to the website content, which you just said was copyrighted.If it is copyrighted then they are reproducing it illegally.
I give up on a response that explains the situation in plain English. Plain English is high on the agenda now from researchers bidding for funding and I have read some dire plain English summaries that have been sent to me to comment on. Come on PUK, take on board what you are asking of your RSN and RIG members. Plain Engllsh please in explaining the situation that many of us are not happy with.
It appears to me and possibly others that we are complaining about social interactions, baring of the soul, emotional outbursts , cries for help, jokes and utter rubbish that gets us through the day appearing in search engines.
It is not fair of PDUk to dismiss the concerns of members so readily with a response that does not match the complaint. The response is bland, unhelpful and patronising to the members who feel strongly about this subject
This is a charitable organisation to support people with PD , is it not good practice to consult members about what they need from the site? rather than just assume. I remain convinced there is a solution that will protect members it is not good enough to just keep repeating "the rules". This is a dismissive attitude.
I apologise if I missed a post on here, but has there been a consultation meeting on this issue? This subject appears to have been "squashed" by moderators at a clerical level rather than a serious debate to meet the needs of its members.
The site is evolving , I like to think it is a dynamic resource , there is more social interaction and clearly a need for this. Come on PDUK, a little more thought on this subject please.
I am new on here and confess that when I was diagnosed with PD my wife/carer did come on this very site to glean information. At the time I didn't join P UK as I wasn't getting the support from my local Nurse. Now I have moved areas I have made more of an effort and not only joined as a member of P UK but to suss out my local group with the intention of getting along to their meetings and to contribute my experiences of the disease. It is fair to say that I have had experience of forums. Whilst I appreciate it may be daunting to some to even come on here but we need to encourage these people so that they can feel welcome and comfortable in this community and be able to share what they are feeling and seek out advice and help. So long as people are careful in what they are putting on here then they have nothing to worry about, all I will say is think and check before you post
Some of us do NOT feel,'comfortable in this community...........to share what they are feeling and seek out advice and help,' with recent revelations of posts appearing on social media sites.
Some posts on here are very personal and sensitive, as you will discover when you have been a member for longer than a few days.I note that you joined on the 21/7. Try bowel and bladder control or constipation for starters. Add side effects of dopamine agonists, Parkinson's dementia.I could continue with more examples of posts where the poster is desperate for help/advice and gets it from other members,.
Sadly, in future, some of us will not be as forthcoming as we have been over the years, for me the last 10 years since I signed up to this forum.
I have always been mindful of what I have posted on this forum BUT my help and advice will now be very restricted to generalised posts with no specific advice on 20 years of living with Parkinson's, let alone on personal issues that the condition affects.
Benji, I stand corrected my wife/carer was told to go on to Parkinsons website to find out about going from DLA to PiP which she did and she saw that there was a Forum. The information gleaned was from P UK and not the Forum. I can understand how you feel about side effects/issues, yes, constipation I can relate to as well as memory lapse and balance issues.
L TO R YOUSE LAST TWO ME AND BELOVED FED4
