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I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Ronny Allan (RonnyAllan.NET) has numerous social media outlets and platforms. The private Facebook group is only one of those outlets but in some ways is integrated into the others. Thus why Ronny will often post a blog post in response to a question.
The private Facebook group can be found here. This is a chat site for discussions about Living with Neuroendocrine Cancer. It’s for patients and/or their primary caregiver/carer/supporter. The primary caregiver/carer/supporter must ensure the patient is aware and has agreed that they can join to fulfil this role.
The group is for any type of Neuroendocrine Neoplasm (NEN) – a term combining Neuroendocrine Tumours (NET) and Neuroendocrine Carcinoma (NEC). The site owner will advise if the group is not suitable once details of the diagnosis become clear, sometimes offering alternative groups.
** We get a lot of people trying to join in addition to the patient and/or primary caregiver on the basis they want information about the cancer. If you are the patient or primary caregiver/carer/supporter, please do not invite others to join unless there is a special reason why an additional support person is required (contact Ronny Allan to provide more info).
This is the wrong medium for those joining just for “information” – it’s a discussion group and therefore a very unstructured array of data/information. If this fits your profile, please go to the following sources of information which all contain many authoritative links to expert guidance:
Newsletter – see subscription at the bottom of this page. Sign up with an email.
Public Facebook Page Technical Info (blogs) – Click here and Like
Public Facebook Page Awareness Info (blogs) – Click here and Like
Public Facebook Page Ronny Allan’s main page but mainly contains anecdotes about living with cancer including travel and hikes etc, warning contains humour! – Click here and Follow
The owner may also invite carefully selected medical professionals to join. Regardless of who posts or comments, nothing in this group should be considered medical advice, even it a healthcare professional says it. Pharmaceutical company representatives are not allowed to join.
Disclaimer. Check out the disclaimer which is applicable to all – click here.
What we do and what we don’t do
What we do. This is a educational support group. It’s not designed to run like a standard Facebook patient forum. This is a group where people can feel ‘information safe’ and not be bombarded with unsubstantiated information and unrelated ‘Facebook tat’ you may see elsewhere (these types of posts won’t make to the group content). We focus on important things that really matter to patients and their supporters. Posts without a question or something of interest may not suit the purposes of this group, please word them carefully.
What we don’t do. We don’t do the zebra/unicorn/peacock thing, we are people in this group and many people see this as dehumanising. Nor do we do the ubiquitous junk mail stuff such as quotes/memes/GIFs. This group also discourages the spreading of cancer myths including those specific to Neuroendocrine Cancer.
Just to emphasise the above, if you have come to this group to call people by the name of an animal and you want to see masses of Facebook ‘tat’ and cancer myths, then you’re in the wrong place and should leave.
I would also emphasises that if you have come to this group to promote your own site and/or poach members to your own site or once you are affiliated with, then you’re in the wrong place and should leave (people who are owners/admins/moderators of other groups take note). If you are found doing this, you will be removed, banned and blocked.
If you have come to this group with the sole purpose of undermining the group’s purpose and rules, you will be removed, banned and blocked.
Please also note we are not counsellors, financial advisors or lawyers. These types of questions are beyond the scope of this group.
Neuroendocrine Neoplasms (NEN) is a term covering all types from low-grade low stage well-differentiated Neuroendocrine Tumours (NETs) all the way up to high-grade high stage poorly differentiated Neuroendocrine Carcinomas (NEC). Additionally, there are people from all across the world and who are in widely different types of healthcare systems (public and private/insurance-based). So please remember the audience when posting as this regularly causes confusion.
The Detailed Rules.
As of 1st November 2023 – ALL MEMBERS MUST READ
Due to limitations on the Facebook group setup (abbreviated 10 rules), further expansion of the 10 rules is given below:
3. Healthcare professionals who are also NET patients are in the group as patients. Healthcare professionals (patient or not) must remember that any contribution made reflects the fact that they do not know the detailed medical circumstances of those asking questions.
4. All posts will be filtered, authorised, and where time permits, scheduled to make sure people get time to react to each post if they wish. People do not need my permission to post but posts that are not in adherence to these rules will not be authorised and the poster will be informed which rule is not in compliance. There may be gaps due to time zones, please be patient, there is no need to repeat posts because you think they did not work.
5. The subject of any post and subsequent discussion is expected to be NET education including support for those wishing to learn from others. Venting and complaining need to be balanced against the purpose of the group and these rules. Just venting and complaining without a learning and support element is not really what I set up this group for. No personal videos or photos please.
16. The group owner and administrators/moderators work very hard to build and maintain this group. Anyone found actively or covertly poaching members away from this group will be removed from the group and banned. Members should be wary about receiving unsolicited messages from other members, they may not be what they seem and if concerned, report this activity to the owner or one of the other members of the group admin. Engaging in this activity may result in removal from the group, particularly when the member receiving a message out of the blue is uncomfortable. Our experience indicates members do not appreciate other members messaging them out of the blue, some describing it as ‘creepy’, even when they are told a message has been sent.
Owners/admins/moderators of other NET groups can join as a patient or the caregiver/carer/support person of a living patient needing support but any of the above activities will result in removal from the group (unless they have a pre-arranged contribution with Ronny Allan).
18. The Administrators and Moderators are there to help but they are also there to protect the integrity of the group and resolve issues. Anyone found blocking a group administrator or moderator will be removed from the group. We have settings in the group that provide us with an indication an admin has been blocked.
19. All posts are monitored, and admins will delete posts and comments that are out of compliance. After reading these rules, if you think this group is not for you, kindly remove yourself. If you remain, it is assumed you will adhere to these rules.
20. Please respect everyone’s privacy. Being part of this ‘closed’ group requires mutual trust. Authentic, expressive discussions make groups great, but may also be sensitive and private. No screenshots are to be taken and posted elsewhere – what’s shared in the group should stay in the group.
21. Summary of what is not allowed. As you would expect, this will be a group for support and educational purposes. These posts are not accepted:
A. Accepting lots of the usual ‘tat’ and ‘junk’ posts I see on other groups.
B. Drama – people arguing beyond what appears to be civil.
C. No Memes including those inspirational quotes that seem to pervade the internet.
D. No Zebra, Unicorn, Peacock stuff including inferring via a theme, emoji or internet link i.e. if you post an internet link (url) and it by default displays something against the rules, that will also be removed. This is a progressive group, not stuck in the 1980s, and is focused on what matters to patients. It’s not rare!
E. No myths – e.g. no unsubstantiated claims of what prevents or causes cancer (including NETs). e.g. miracle cures that have no scientific base for treating cancer and in some cases, have been scientifically debunked or banned from sale because they are dangerous – therefore do not post about this please. e.g. cannabis conversations due to the aforementioned ‘miracle cure’ claims, circular discussions; and legal situation in many countries.
F. No coloured or themed background posts please.
G. No politics.
H. Posts simply asking for prayers (i.e. soliciting prayers). In response to a post, if people want to offer prayers for their own validation, which is acceptable, but people should not feel pressured in doing to. Our experience is that people who want to offer prayers will do so without being asked. Others will offer other types of support. Please do not solicit prayers. People who want to offer prayers will do this; others may choose their own methods of supporting you.
I. No fundraising or ‘GoFundMe’ activities please, there are plenty of other places to do this.
J. Be careful with coronavirus or coronavirus vaccine questions as false information may result in Facebook removing the content and giving the group owner a warning. This is a support group, and these issues are clearly a discussion to have with your own doctor. You cannot expect any other patient or supporter to give you a 100% accurate answer in respect of your own situation. We want the support and the focus of the group to be on NET and not be superseded and taken over by controversial discussions. We review this restriction regularly.
I will personally monitor this group closely to make sure it stays on track for what it is intended to be and not turn into yet another unmanageable support group. There are many of those out there. I know this group isn’t for everyone, so I want to make sure everyone knows what we do here, and what we don’t. Remember, being part of a cancer group is a privilege, not a right. The following link provides some guidance to get the best out of this group – “How to use the group”