Forum Threads II

[Dandygal76]

Hi PCUK and nurse Diane

I note that there was no right of reply to the message stating that the 'non cancer chat' thread had been removed and so I created my own thread to allow such reply. I cannot recall now where PW posted but I hope it was in the 'coping with loss' section I have posted on because it is still early days for her loss and so I considered it a part of what she needed right now. Perhaps it could have been moved there if not?

I was wondering... do you still keep a copy of the thread or has it been deleted for all time? I would really appreciate a copy sent to me if that would be in accordance with your protocols. I have been in a place several times whereby I would like to write to PCUK to suggest that perhaps the rules in place may be a little draconian. This is in no way a slight at those (like you) that have to moderate the forum but more about the rules set at policy level that may need some updating? I am not saying the outcome would be what I think should happen but as a registered charity, receiving charitable donations and with the set policies they are encumbered by as a result of the regulations I think it is important that they are truly aligned not only with what they are trying to achieve for wider stakeholders but also that on the front line end users. Can you tell me when the forum rules were last reviewed and who agrees to the rules? Does this go up to committee level?

I am not sure in the slightest that the thread you deleted was causing any offence at all and I would appreciate you stating to us why it is not about 'coping with loss' and someones attempt to engage with the forum on a new comfortable level for this time. I am quite sure the thread would probably have petered out anyway. I know you e-mailed PW over this but I think it is not the highest priority in her shoes to debate with you over this matter. Could you please explain to us all why you feel this is not within the ethos and policy of PCUK and how it was affecting the status of the charity.

I could sort of understand it if you had hundreds or thousands of people you are monitoring but this is a small and somewhat self regulating group anyway.

I appreciate everything the PCUK nurses do but that does not mean that certain PCUK policies would not be subject to some scrutiny. I feel fairly certain I am not the only one wondering what I do. As a second interest, is there a process in which your end users are consulted on what you set out at policy level? I was also interested if you consult with each other over this as moderators or if the choice is solely down to the PCUK nurse at the time of review of the post?

I reiterate I would certainly be interested if you keep a copy of the thread so that an open discussion is more forthcoming over this matter for which I have had an interest before.

Kindest regards

DG

[Dandygal76]

I decided to look at the forum rules... would the post not have fitted under this...

5) Keep it useful and honest

Sharing experiences is at the heart of the forum, but please be careful not to give medical advice.

"Conversations on the forum can be wide-ranging, but if you post something that is completely unrelated to the original topic, we may remove it or move it to a more appropriate area. We have a ‘social’ area where more general chat or discussion of more light-hearted matters is welcomed."

[Veema]

I thought it was a nice idea...especially as I can't find anywhere within the forums or user area that allows private messaging to other members and should we want to get in contact on facebook or by direct email we've to go through the nurses to enable us to link up, and then there are always those that don't do facebook.

Chatting about general life, our hobbies and what we may be doing on a day to day basis with people that are going through, or have been through, or are likely to go through the trauma's that we as both carers and patients are going through has most definitely helped me. It's not all about the cancer, it's about how the disease has shaped us into what we are now...and lets face it, we don't want to be talking about THAT all the time!

I was a member of a forum for a heart charity when Phoebe was younger...I actually still am...and we were allowed to talk about things other than hearts on that forum and I consider some of the people I met virtually on that forum as some of my closest friends, even though I've never actually met them.

I understand there are rules, I understand that such a thread could become something that it was not really intended to be and that moderating the boards can be a tough job, but we are all adults.

Anyway...that's my twopennorth.

I can be found on facebook as Victoria Alletson if anyone wants to look me up...and I'm happy for the nurses to pass my e-mail address onto anyone who might want it.

Vx

[Proud Wife]

Morning lovely people.

Thank you so much for finding and posting that rule DG. I didn't think I was doing anything wrong or I wouldn't have started that thread obviously. I do hope it's been kept as the opening post was all about

my need to move home and how I'm coping after hubby's passing.

Actually, I was inspired by Marmalade's "Carrying on" thread but didn't want to copy her, hence the general chit chat name. I posted if I remember correctly in the "friends and family" section, which I felt most appropriate.

I no longer want to focus on the negatives of hubby's passing, rather the positives which is why I closed my original thread.

However, I would still like a place on this forum (if allowed) to chart my own progress and as 'cancer' talk was banned in our home, unless absolutely necessary, whilst hubby was alive, I'd like to do likewise now. I would like to respect his views and continue now support others where I can on their own threads but equally so, creating a little cyber space where all of us in the same boat, no matter what side of the 'divide' can just have a few minutes of normality - an escapism from what we used to call the 'C BOMB.'

Having seen the relevant forum rule which DG very kindly copied and pasted, I feel perhaps my thread was appropriate after all. It fits my definition of light hearted matters, whilst combining updates of my progress which I hope would give comfort to those following in my unfortunate shoes....

I do hope Diane you would kindly reconsider - you caught me on the hop yesterday when you emailed and I was mortified that I might have done something that breached forum rules. I will always be eternally grateful for the support I was given during hubby's treatment from this wonderful charity.

Have a good day all. The rain awaits me in the Canaries. What fun! xx

[WifeampMum]

Oh gosh Dandy, don't you think PCUK have more important things to do with their time?

[Dandygal76]

Of course they have lots of things to do with their time... we all do in all of our jobs and work but part of that role has been determined by PCUK management to be the monitoring of the boards against the rules of the forum - this could be delegated to admin and medical stuff passed on. But PCUK have chosen this route. We all have better things to do at work but I have to work on the most mundane at times. This is not a huge resource pull. It can be quite upsetting when they do this and you are frustratingly censored for no reason really or a silly reason. This type of censorship should be subject to some scrutiny and different people need different types of support and all of them are legitimate to me, whether we disagree with them or not.

Part of the service that is provided is this forum. As a charity, there is nothing wrong with highlighting what stakeholders want and to challenge elements as any individual see fit. Management could wade in at anytime! The policy has not been updated from what I can see since 2011. In terms of a value added service I think for any organisation it is important to look at that holistically and to continue to measure your policies against the times and the changing needs of the stakeholders. But more importantly, I do not believe it was a breach of the rules.

I truly believe that charities are accountable for all of their decision making, just like the public sector but I won't jump on that soap box today. x

[Didge]

Although I didn't get to read the thread as I don't come on here so much now, I do think that a non cancer thread where people can talk about other things is a nice idea and in fact is still relevant to the site as it provides a place to discuss other matters which can sometimes seem inappropriate on other threads. That would in itself appear to be a form of support for forum members.

[PCUK Nurse Dianne]

Thanks Ladies for your responses, and I do hope my response will answer some of the points that have been raised. Our forum guidelines are set within a framework of best practice for forums and it’s users. Best practice ensures providing a safe environment to those using and also viewing the forum, and a welcoming environment for those wishing to join in. Feedback form our stakeholders and services users on our services is incredibly important to us at Pancreatic Cancer UK, and we use this feedback to develop and improve our services. We have previously given users the opportunity to feedback via annual ‘Satisfaction surveys’, both on our Support service and also the Discussion forum. In relation to the Discussion forum this survey has included such subjects as access to the forum, registration processes, ease of use of the forum, forum threads (including topics for consideration) and also involvement of nurses moderation/other input. We have recently reviewed our feedback mechanism and have made this available as an ongoing part of the service rather than just having an annual survey. This is the link to the feedback mechanism: http://www.pancreaticcancer.org.uk/information-and-support/get-support/support-line/feedback-on-our-support-line-service/

From a perspective of rules and guidance these are reviewed on an annual basis. We have been working on updating the forum with a more ‘user-friendly’ forum page and alongside this are working on a review of the Rules and Guidance. The update of the forum has included input from service users. The updated forum was due to be running by November, 2016 however the company setting up the technical component of the forum have notified us this will now be the beginning of the new year. Our plan is to update the Rules and Guidance section in fitting with the new forum pages and will take into consideration any feedback received on these. The guidelines will be reviewed by our Head of Services, Sarah Bell, myself and approved by our Director of Operations, Anna Jewell.

As a charity we aim to be open and inclusive, and value constructive feedback from any of our service users. Through the feedback survey we would also be happy to have suggestions for new topic areas that people would like to see included on the forum and we can then consult on these ideas with a wider group of service users. We want to make sure that the forum meets the needs of everyone affected by pancreatic cancer and will consider any new suggestions and how they fit with the role of the forum in providing information sharing and mutual support around the experience of pancreatic cancer.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Team

[Dandygal76]

Many thanks for that Dianne, it was really informative. I will look into providing some constructive feedback myself and hope that others do the same to help support PCUK to maintain progressive and user friendly services surrounding the forum. I think it is important that stakeholders actively engage with these processes whilst understanding the need that PCUK have to satisfy multiple other stakeholders and that sometimes the conflicts between the different requirements are a delicate balance to achieve.

Thanks again,

DG

[J_T]

Hi all

I am a user of old. I think this forum is primarily for support and information during very difficult times. It was certainly a life line for me and my family.

Of course, during the time I used the forum I made some very good friends and we, seven of us, are all still in regular contact and meet up occasionally. The thing is though, we took ourselves away from the site and formed our own private group on Facebook so as not to distract from the prime purpose of the pcuk forum, but we were still able to discuss how we were feeling etc as well as develop our friendships and talk about the ordinary every day things.

My husband died just over three years ago and I kept returning to the site quite regularly to try and give support and advice where I could whilst still continuing my relationship with the friends I'd made here on our FB Group. I now post less but am still reading threads, probably because I still like the connection with such a special place. I'm sure the time will come when I don't come back though.

I agree it's good to talk about non cancer issues but this is a cancer charity and forum, it's what it's here for - talking about pancreatic cancer. Once one non related thread is started, another one may begin and so on, so that it becomes a 'chat forum' and more important threads may get lost in the chit chat.

If you have made special friendships that's fantastic and I would urge to connect privately if you can. The friends I made here are friends for life.

From the heart

Julia x

[Guest]

Julia, I completely agree, it is all about PC on here and thank goodness there is somewhere like this for us all to go.

I am glad we have the 'coping with loss' section as to go from full on 100% supported posting during our loved ones final journey to nothing when everything else around us is hideous and frightening and scary would be awful. There are so many things that have to be coped with following a death and precious little support once the patient has died. I'd like to see far more posts, information, help and support in that section. We may not have pancreatic cancer but we have come closer to it than most will.

The only real issue I have with a chat section which excludes cancer related posts is that someone would have to moderate it and I don't really see why it should have to be specialist cancer nurses who already have enough to do. Different moderators for different sections seems overly complex so on balance, I think that a private arrangement on one of the many messaging apps would work better for those who want it. There is a system of passing on personal details for this purpose in place so it should not be too difficult to achieve.

Love to all,

Marmalade xx

[Justamo]

All of the above goes to show that you can please some of the people all of the time, and all of the people some of the time, but you can't please all of the people all of the time. I think Abraham Lincoln said that.

I liked the chat, but don't do Facebook or Twitter because I don't have a smart phone and I hate typing on my tablet. I might think about signing up to Facebook so that I don't clog the forums up with inane chat. I can understand people getting withdrawal symptoms when they stop using this as a safety valve - that's why this particular forum is so helpful.

Take care, Love Mo

[Dandygal76]

I would agree with you Julia and Marmalade if this was a rather large user group and I was in no way suggesting multiple moderators.. just perhaps that it does not necessarily have to be the PCUK nurses that moderate. A bit like our fraud referrals at work, find a suitable person that sift through all the rubbish referrals and pass on the ones the professionals need to look at. This would save the PCUK nurses reading all about our lives that have been put in other threads anyway. The main thing for me is that there was nothing in PW's thread that was anything different than in our own threads. We have all discussed matters, decorating, floods, teddies, cats, bedding etc etc and actually having one thread doing that may have saved a lot of the cancer threads getting clogged up. I really couldn't have seen multiple threads launching and I think it would have confined to that one.

I have set up a facebook group and I am in contact with many people away from this forum and I think the fact that there is a lot of chatter on here does make it an attractive site to some from what I can gather from who I talk to and also the number of users out there who seem to read the threads without actively engaging.

I have been pulling away from here in terms of chatter because I find it a little frustrating and that is a shame really because people do follow the stories and I did find it therapeutic to post. However, I am of the view that each person should be able to use the forum how they feel they need to as long as they do not slander anyone or post specific nasties about individuals / institutions by naming them negatively, are not abusive / rude and that they do not dish out quack medical advice that will not require a professional medical professional to verify before treatment. I also think we should be able to show people where we have had positive experiences so that people can make their own informed choices based on user positive experiences. As I have said to PCUK, I am not saying I am right and that things will change. However, challenge does sometimes lead to change and what is today's best industry practice will only be so until the next best practice evolves, and evolve it should in this information age.

On the whole, I really do not think that PW's post was that big a deal and mainly, I still do not think it broke the rules.

Toodle pip for now. x

[WifeampMum]

It seems to me that the forum is very fortunate to have a small group of frequent posters who offer a lot of support to others. If some of them want a 'lounge area' for general chat, and if this doesn't make many demands on moderators' time, then perhaps it wouldn't be such a bad idea. If it turned out to be too costly, PCUK could pull the plug. As DG said, it might have the advantage of preventing personal threads from getting too clogged up with chit chat. This would make it easier for information seekers to find what they are looking for. Also I do wonder if the rather chat-heavy culture of the forum (compared to other cancer forums that I visit) puts some newbies off. If there was a dedicated chat area, the other threads might get more active. Oh, and I'm not advocating a policy of 'no chat' outside the lounge area, but just less chat.

On the negative side, a lounge area might make it more difficult for the bereaved to 'move on' from the forum.

[Justamo]

W&M, you have said exactly what I wanted to say, but couldn't find the words. Every time I hit the submit button on the Friends and Family Forum I want to edit out all the nonsense I have talked about the cat and the washing.

If space could be found for a chatty thread, that would be marvellous. And if it could even be self-moderated that would be even better. I would much prefer that our nurses spend their time on the phone lines or replying to individual enquiries than moderating chatty posts. We all understand that these posts may be visible on the internet; every time I log on there is a BOT of some description trawling around, but surely we are sensible enough not to libel anybody or use inappropriate language or otherwise offend ?

Having shared some of our darkest hours on these forums, it seems to me to be desirable to share other things as well, but I completely understand that a newbie could be frustrated by a lot of chit-chat that isn't about PC.

I hope a solution can be found that will keep most of the people happy most of the time.

Take care

Mo

[patrigib]

Chit chat, cats and other things are part of our lives too. It's hard enough for people suffering from cancer and their caregivers, so why not have a touch of humour, or daily life. That's part of our experience along this difficult path as well............

[Guest]

That's true! M xx

[Veema]

I also think that it helps newbies, who may be a bit anxious about posting anything, to see that we are a friendly bunch...and it also encourages us who have been through it all to keep coming back, meaning that there is always current stuff to be reading. I remember joining here when Nige was first diagnosed and there were hardly any posts and it discourages people from then posting because you don't think you're going to get a reply...I went over to the macmillan forums for ages because of that...and they weren't half as helpful as you lot on here really...just a bit more activity at that time.

Why can't we give it a go and see what happens? If it doesn't work out, or there starts to be loads of threads which are non cancer related then review it and maybe put a stop to it...or just have one thread available for non-cancer related chit chat.

Vx

[Proud Wife]

I think both W & M and Veema are spot on. Especially about not clogging threads with non cancer related stuff to help those find the information they need as quickly as possible. I don't know whether to be pleased or embarrassed to have started such a debate! xx