Rules for the Forum

Rules?

by AgentX86 - 2023-01-12 14:32:45

The only rules that I know of are the Ts&Cs under the "CLUB" tab.  None of are speaking as doctors[*], just fellow travelers who have experiences to share with others. 

[*] A doctor couldn't offer information to a non-patient, sight unseen.

answering posts

by new to pace.... - 2023-01-12 14:55:36

As AgentX86 said above.  I know i am not as techical as others, so i answer what i know.  I find it helpful if the bio's are filled esp. as to where they are located as their are different answers for each location.

of course i hope after at least i answer that the person who queried responds.

new to pace

Understood !

by Penguin - 2023-01-12 15:32:07

AgentX - Yes, I noted the T&C's when I joined but will refresh my memory - thank you. 

New to pace - Yes, a bit of feedback helps too and a bit of personal info, although privacy can be an issue. 

Reason I asked is that it's such a technical subject that there's a margin for error. No one wants to steer a poster in the wrong direction!  I've learned not to be too put off by the technical aspects when dealing with the doctors and techs, who clearly know so much more than us, but the power imbalance can be difficult to deal with and I have had references made to 'stupid questions' and rolling eyes at times.

I suppose that all of this makes me acutely aware of how posters and people answering might feel on a forum like this, where none of us know - initially - who knows what and who might be most helpful.  

I really value the knowledge on here, but want to feel like I can ask the 'dumb' questions without feeling inhibited and answer a few posts without too much trepidation that I may have misguided someone on a subject that I may not have grasped too well myself. 

I wondered if there were any 'rules' which guide people as to what is and is not acceptable in terms of comments and whether there are any key people who offer specialist knowledge on a range of topics.  

Perhaps I'm over-thinking it! 

responses

by Tracey_E - 2023-01-12 16:06:09

Never assume what you read on the internet is completely accurate. This forum is for support, not medical advice. None of us are medical professionals, and our advice is based on personal experience. Anyone can register and answer questions. 

There may be some medical professionals here, but giving medical advice over the internet is a bad idea so they tend to keep quiet about their qualifications. 

If I see advice that is way off base but not dangerous, rather than call the person out publicly I have been known to message the recipient of the advice to let them know I disagree and why. 

There are a few of us who are moderators. We don't step in often, and when we do it's not usually because a response is technically incorrect but because it's not polite or violates terms of service. As long as the children play nicely, we don't do much but keep an eye on things. 

We're all here to help and support each other. Please don't be shy about chiming in when you have something to say.

what a thoughtful post

by Gemita - 2023-01-12 16:09:51

Penguin what a thoughtful post and I can see that you are going to become a key member of this group in no time at all.

Have you read the Club’s Terms of Use guidelines:  Go to Club, Terms of Use which gives info on things like Conduct, Submission of Content.  Might be worth a read.  Primarily, Pacemaker Club is an online community for pacemaker, implantable cardioverter defibrillator (ICD) and cardiac resynchronization therapy (CRT) recipients. Our purpose is to help implantable device recipients meet, share information and support each other.  With the emphasis on Support (my own comment).  Founded in 2000 by a veteran pacemaker recipient, Pacemaker Club continues to be operated by recipients, for other patients and their loved-ones.

No one has been vetted Penguin to my knowledge. We all try our best to help others who may be less able to help themselves.  Of course after several years answering the same questions about battery end of life, lead dislodgement, pacemaker infection and the like, we may all begin to sound like experts and members in authority in no time at all.  

We are perfectly free to hold another member to account if they say something out of place, inappropriate or make inaccurate statements about a health condition and remember a research link to back up any comments we may make, is always useful. 

There is no general guide of how to answer posts, except to keep our responses courteous, caring and helpful, without trying to impose our will on others, or to assume we can make a diagnosis for a member’s difficulties from the comfort of our own home.  When I answer a post, I usually want to find out the medical history of the member and to learn about their condition if I am not familiar with it, before answering.  It is a learning process for us all.

We are free, within the rules, to say whatever we wish but of course we should not try to diagnose a particular problem but direct the member posting to seek advice from their own doctors who will know their own condition best.  Of course it can be difficult when a New Member is specifically asking for help with a diagnosis and new and established members continue to do this.  All we can do is to give support and our own personal experience, if we have one, which counts for a great deal in my opinion. 

Personally I feel most of the support that is sought here is for the emotional problems that a pacemaker may bring, the fear for example of living with a pacemaker for the rest of our lives, how it might impact on our relationships and quality of life. 

Although there is no requirement to complete our Bio, it would help us to respond to new posts from new members if they took the time to do this.  It would also be nice if we always received feedback to our comments on a New Post.  This doesn’t always happen.

I have read your posts Penguin and I like what I have read so far, so go ahead with confidence and post any comments that you feel will help reassure other members.  

there are no dumb questions

by Tracey_E - 2023-01-12 16:11:46

It's insulting and disrespectful when doctors respond with an eye roll!! I've always been fortunate to have doctors and reps who respect my desire to understand and have been great about explaining things to me. 

Never feel like your question is too basic. If you want to know, then it's a good question. 

There are, however, questions that have been asked a gazillion times. There is a search bar at the top right which is easily overlooked. That said, it's not a requirement to start there. If you have a question, go for it. We are all newbies once. 

questioning

by new to pace.... - 2023-01-12 16:13:03

in answer to some of you queries.  If you just fill in the bio with the basics that is ok.  If you want to add other information that is your choice.

The only way to learn is to ask,  The only dumb question is the one you did not ask.

Many   have had their  pacemakers or Icd's for many years..  They really know how things go.

You proably are over thinking, just relax ask away.  

Have seen your answers to some of the others who have posted.  Found them quite helpful.

new to pace

Thanks for the Guidance

by Penguin - 2023-01-12 17:10:40

Thank you for these responses Tracey-E, Gemita, New2Pace, 

Tracey-E - I wondered about moderators and who they might be. Are the moderators listed anywhere? I ask because it's helpful sometimes to be able to contact a moderators if unsure about whether or not to post something and what is/is not acceptable. 

I'd appreciate a PM if anything I post needs to be revised.  You don't learn if you're not told! 

Gemita -  Thank you for the guidance to the Terms of Use. I had read them, but they were a little looser than guidance on forums I've used before and with the subject matter being 'cardiac' I wanted to be sure about what is/isn't permissible.

New to Pace  - Yes, I gathered that there were people with years of experience and others elsewhere on the spectrum. I fall somewhat in the middle to lower end of that having spent my first years of having a PM in denial and trying to ignore it's presence, then deciding that I really needed to find out about it.  I'm somewhat further along now after 10 years or so, but it still feels overwhelming at times. 

I'll try not to over think it! 

Penguin

by Gemita - 2023-01-12 17:37:35

There are no formalities here and we do not approve "New" posts before they are posted as happens on some forums.  Perhaps our rules could do with an upgrade to protect us from spam messages which sadly still occur? 

Tracey_E and I are active moderators working quietly in the background.  I am unaware of anyone else Penguin, although you could always write to Admin for guidance too.

Ah!

by Penguin - 2023-01-12 18:13:35

 I understand better now. 

It's good to know who does what and where to turn for advice. 

Thank you. Your advice, as always, has been helpful. 

moderators

by Tracey_E - 2023-01-12 18:38:38

There used to be 5 of us but Gemita and I are the only ones currently active. It is not listed anywhere because we really don't do much. The biggest thing we do is kill spam posts/users. I can't even remember the last time I edited or deleted a post due to content.

You're overthinking! We are pretty laid back here, I doubt you are going to ask anything we'd have a problem with. But if you ever have a doubt or a question you don't want to post publicly, feel free to message me any time. 

Thank you!

by Penguin - 2023-01-13 06:43:43

Thanks Tracey-E. 

Got it! 

Who should comment?

by Gotrhythm - 2023-01-13 15:51:27

I don't have anything to add to the comments above.

Since now you know there are no qualifications, I just suggest if you see a post that seems to be talking about something you have had experience with, and if you think you have something to share about it, then do.

There are no dumb questions. Are there any dumb comments, you may ask. Well, I don't think so. Some comments will be more useful than others, but you never know who else is reading the comments. I lurked for over a year before I asked a question and then a long time before I dared a comment. So often something in a comment answered a question I didn't even know I had.

Who knows? What you say might be useful to someone, somewhere.

Give it a go.

Angry Sparrow & Gotrhythm

by Penguin - 2023-01-13 16:27:35

Thank you very much for your replies. 

I particularly relate to your 'lurking' before daring to post GotRhythm.  I've felt like that, and I'm sure many others do too. 

Angry Sparrow, thank you too, you make some really helpful and encouraging points. 

Perhaps we should all ask more questions? I'd love to see more posts from people - particularly about settings for example and what they mean / do.  Having fairly recently received a new device I'm like a novice all over again, having taken years to get to the point where I understood the last one.  Technology moves on...too fast! 

This forum's best point (for me) is the coming together of so many people who may have the same pacemaker.  It's a great opportunity to short circuit the usual questioning of pacing techs which always leaves me a) confused and b) needing a layman's explanation and to ask about how things work from other patients. 

Thank you. 

Penguin

by Gemita - 2023-01-13 19:36:41

Your suggestion that we should all ask more questions, particularly on the subject of Settings is an excellent one, since the right Settings are so important for a comfortable pacing experience.

I did at one time consider trying to set up say a monthly Settings Clinic where we could all bring our questions and get them answered but it would require input/commitment from members who could answer questions on a wide range of different Settings across different manufacturers.  I am not sure how many members would be prepared to do this, but I think it could work and be successful.  It would certainly stimulate interest.  I even thought about setting up an ECG reading clinic too, but that would be more challenging.

Anyway, I thought I would post these thoughts Penguin in case anyone wants to take up the challenge or offer any thoughts about how we could get something like this to work?  It doesn’t have to be only on the subject of Settings;  it could be on any subject?  We could then provide dates for your diary when you could log on and get involved by asking or answering questions on a particular topic.  

Suggestions

by Penguin - 2023-01-14 08:11:08

Gemita, 

I would be very interested in anything that helps me understand my settings better. 

Suggestion: This may require administration / structure 

Current Structure: 

Currently the site's sub-sections are structured by 'area of interest' e.g. Coping, Medications, Settings etc. This may work well and I'm too new to comment at length. However, I feel that the forum sections (particularly settings) would be more helpful if they had sub-sections which were manufacturer specific. 

This, as you will know, is because Medtronic have settings that Boston Scientific don't have and so forth. Each manufacturer has a different name for algorithms which may do fairly similar things, but with nuances / differences which become confusing to negotiate when communicating with members who have different devices.  The language, at least, is simplified when Biotronik members congregate together and Boston Scientific members do the same and so on.   There will still be differences between older and newer technology but at least some common ground and easier to find peer experience. 

The other suggestion would be quarterly web based Q&A sessions with a Manufacturer Rep for trouble shooting.  Questions could be approved and provided in advance.  Privacy issues would be a subject to consider, but this could build up relationships between manufacturers and patients and be 'sold' to them as a means of obtaining valuable feedback.  Currently their customers are hospitals, (particularly in the UK), but the end user should feature in the relationship too and to my mind should matter most! 

Any thoughts on this? 

So helpful Penguin

by Gemita - 2023-01-14 18:50:48

Penguin, thank you for your excellent suggestions.  I don’t think we can change what is set up here, even though it might make perfect sense to do so.  I think rather we should work with what we have got and focus more on getting together a handful of members who might be prepared to help answer questions on Settings on a regular basis.  To my knowledge we have a few members who could possibly help if we felt there was sufficient interest?  And of course I won't proceed without first speaking to Admin for his guidance.

We cannot of course cover individual settings for members since these will have to be discussed with their individual pacing teams but we could try to cover a number of different settings and to explain what the purpose of each setting is and where to go for further information.  For example, when I want to learn about certain Medtronic settings, my places to go to are:-

1. I read my Pacemaker Manual

2. I search online at Medtronic Academy for a list of technical support papers on many individual Settings:-

https://www.medtronicacademy.com/medtronic-device-features-2

3.  I phone my UK Medtronic BeConnected patient helpline:  00800 2666 3282 (free phone).  As long as I give them my pacemaker ID details, they will usually give good advice.  They also asked for my Hospital details.

4.  I phone or email my Pacemaker Clinic at my hospital and they are always willing to answer my questions.

5.  I try to avoid bothering my EP!!

Getting a manufacturer rep involved would be ideal.  It would certainly be good for the manufacturer, the Club and more importantly the patient.  I will make a few enquiries Penguin, without commitment and see what I can find out.  Manufacturer reps might even want to join the Pacemaker Club, some are probably already members, and they could then get involved in any Club discussions on Settings.  

Thank you so much for all your help and great suggestions

Better Suggestions Gemita

by Penguin - 2023-01-15 17:05:25

Your suggestions are probably better Gemita, and you know the forum, it's members and how things might work best. 

I really liked your first suggestion. 

BW 

RULES FOR THE FORUM

by Gail123 - 2023-01-23 02:03:27

PENGUIN, I AM SO GLAD YOU ASKED ABOUT THIS!  NOT ONLY AM I NEW TO PACE MAKER CLUB, BUT I  ALSO HAVE VERY LIMITED EXPERIENCE WITH FORUMS IN GENERAL.  SO I AM GRATEFUL THAT A COUPLE MODERATORS TOLD ME TO START WITH ASKING A MORE PERTINENT QUESTION AT THE SEARCH BAR.

Rules for the forum: kindness and understanding would be a good start

by Gemita - 2023-01-23 08:01:08

Gail, as you can see we are pretty relaxed here.  

I have private messaged you and explained that we are not able to post links which automatically open when clicked.  Not completely sure why, possibly security reasons, or a need for a software upgrade?  You will therefore generally have to copy and paste any link provided in a message, into your main general browser to open.  (Remember links may come and go, websites change, URLs change, so we should ideally test any links before we post to make sure they are still functioning).  It is only a minor nuisance hopefully. 

We are also not able to post pics of ourselves with any posts that we may create.  However, we do have a gallery where we can upload photos.  When you login, go to:  Members Only, Member Gallery and follow the instructions to upload (click on the Upload Image red sign to start the process).

Reference your comment here to Penguin using all caps, my personal feeling is that the use of all capital letters is not very pleasing to the eye and might suggest that the person typing such a message is demanding attention.  I know that this was not your intention but since we are discussing behaviour/rules, I thought I would mention this.  Nonetheless, the use of all capital letters is certainly not prohibited on this forum.

We will try to support you as best we can, although we are still learning ourselves about leadless pacemakers especially since trials on newer technologies, like dual leadless pacemakers, are still ongoing.  I wish you well with your implant