I recently posted in here with a link to a group I set up on Facebook for women from the area I live. I then received a message from Endometriosis UK to say it had been deleted because it was of a promotional nature and went against the guidelines. They explained that they can't be responsible for external content. I understand that, and wouldn't expect them to take responsibility for external content. But does that mean we can't post links to anything, to share with each other news articles on endometriosis or research or blogs? I have responded to the email to ask why my post was deleted, as I can't find anything in the guidelines about posting links. Unless I'm looking in the wrong place. But no one has responded. I also asked how it is best for people living in the area I do to communicate, as we have no local support group. There are a few other women who have joined and we are looking to arrange a meet up in January and it seems a shame that I can't let others know through here. I also don't understand why anyone would have reported my post to Endometriosis UK, when I was just trying to help and create somewhere to communicate with others who live near me. Has anyone else had their post deleted, and can anyone direct me to the guidelines where it states we aren't allowed to post links to external content?
Confused why post was deleted: I recently... - Endometriosis UK
Confused why post was deleted
That's bloody stupid you should be able to set anything you like up! Ring them if they don't respond it things like this that stop the awareness and communication grinds my gears. Wish you luck xxx
Understand your frustration. I have had a recent discussion with EndoMetropolis members as my post on health unlocked signposting to a few resources with experts was deleted. Carol pearson said she'd feedback. It is to do with red tape - what they can & can not say or advocate as a charity but o think someone at the charity is taking it far to far when they stop members from sharing between themselves - my personal view is that it has been very contradictory what posts they are prepared to get involved with and which they turn a blind eye. They have been happy to have someone assume the position of resident expert on here who is neither medically trained or an expert on up to date research into endometriosis - however they actively block attempts to signpost ladies to where there is access to resources from reputable experts in endo - it's a shame when the endo result is that they are effectively blocking access to resources. I am a strong believer in reading and researching as much as possible in order to make the right decision about our individual needs - i feel let down by Endo UK on this one - i am sure that with a bit of thought there is a more acceptable way forward than taking a big brother approach. Crikey we need to move forward not keep stuck in a rut but how do they expect ladies to do so without sharing experinces and resources? P.s anyone interested in a truely fantastic resource by a leading expert feel free to pm me.
I wonder whether it's because it's another support group? I once got done for that on another site years ago (although that was just an online thing, with no chance of meeting up in real life).
Thanks for your replies. I agree that we should be able to share information and resources. All it needs is for a disclaimer to say that Endometriosis UK is not responsible for external content. And clear guidelines. Because the only thing I can see in the terms and conditions about promotion was that of racial hatred. Nothing about posting links to external information. Which is why I was so surprised when I had my post deleted. It sounds like this is a bit of an ongoing problem, however. Let's hope Endometriosis UK can resolve it and find a way forward that works.
Thanks to all for your feedback which raises interesting questions.
Endometriosis UK encourages the sharing of links to verified resources. As some of the comments on this subject here on Health Unlocked say, the guidelines are broad. This is deliberate; it enables us to maximise the information and resources that can be shared, whilst providing a way to monitor the huge range of information out in the public domain. We aim to maintain the highest quality information and resources for the benefit of anyone wishing to find out more about all aspects of endometriosis and services available. We don’t think that adding a disclaimer would foster that process, because accuracy and keeping information up to date would necessarily be compromised. For clarity, the Code of Conduct endometriosis-uk.org/sites/... states: “If you would like to post a link to external content and you are not sure if it is relevant to users, please contact us in the first instance”.
In terms of supporting awareness and communication, we have up to date, accurate information and links on our website. On the Useful Links section on our Information page, there is a link to the BSGE website, with details of accredited endometriosis centres. The charity has a policy not to publish information that mentions specific health professionals because we are aware that one person’s experience and needs regarding consultants can hugely differ from another, and our aim is to facilitate and support rather than to direct. We recommend that women seek out institutions that have been peer reviewed by other medical professionals; again, a good source for this information is the BSGE website.
In terms of local support, Endometriosis UK champions self-management and peer support. Anyone wishing to set up a local support group can contact us by completing an enquiry form. There is also an online support group that is available to those people who either do not have a support group in their area or who prefer not to go to a face to face meeting.
I hope this provides clarity on Endometriosis UK policies around the publishing of posts.
Jane Hudson Jones, CEO, Endometriosis UK
Dear Jane,
Thank you very much for your reply. This does help clarify why my post was deleted.
I was looking at the terms and conditions of HealthUnlocked with regards to posting on here, rather than the code of conduct provided by Endometriosis UK, which is why I couldn't see anything about posting to external content.
With regards to a local support group - I am not in a position where I want to set one up, as I don't feel I could offer a regular commitment. However, I have found a need for one in the Basingstoke area which is why I created the Facebook group for other sufferers in my town to communicate. We are looking to meet up, and discuss organising fundraisers for Endometriosis UK. It would be great if this was something the charity could support. However, I understand that you may only wish to promote 'official' support groups, rather than those that meet on an ad-hoc basis, as is the plan for the one I have created on Facebook.
Emily
Laparoscopy shows little Endo growth but I'm still living with chronic pain. What do I do?
Confused!!
Post Laparoscopy pain
Post op....please help
