Unacceptable Levels of Forum Editing - British Heart Fou...

British Heart Foundation

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Unacceptable Levels of Forum Editing

Anahatta profile image
12 Replies

MANY THANKS TO THOSE PEOPLE WHO OFFER KIND WORDS AND HELPFUL REFLECTIONS!

I am New to this forum, which I believed was a support group. However, after my own period of posting and offering positive support to others I realise there are a disproportionate number of 'repliers' forcing their patronising comments, worse still their medically and pharmaceutically unsupported opinions specially about my prognosis.

These people are little more than school yard bullies, boasting about effectively stopping belching, designing their own future and owning the NHS.

Reporting narcissists is not, on this forum, properly policed, there is no way to delete or block unwanted threads. I very much doubt the BHF actively monitor this site.

I am very disappointed.

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Anahatta profile image
Anahatta
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12 Replies
skid112 profile image
skid112Heart Star

Hi Anahatta,

I am struggling to see this in any of your posts previously under this name I can see three.

The BHF do monitor the postings but only during weekdays and working hours as they are volunteers.

If you feel that you have been bullied you should report this to one of the BHF team, you can also contact any of the heart stars via PM as well to notify us.

Thanks

Mark

Prada47 profile image
Prada47

I am sorry I don't understand your post, I have been using this forum for a year or so and I don't find it as described by you. If you get upset by some ones comments either tell them what you disagree with or just ignore them. This is what it says on the tin, A forum for people to exchange views either on the medication they are taking, or symptoms they are experiencing, or just to offer support to someone going through a bad patch, which many of us do at times !!!

Best Regards from Someone who sees the Forum as a Friend.

bantam12 profile image
bantam12

As Mark has said there don't appear to be any bullying replies on your previous posts, that I can see anyway.

As with any forum there will be a variety of opinions so we just accept the helpful ones and bypass the unhelpful ones.

Everyone is different and what works for one may not work for another but experiences and information are passed on with the best intentions.

Milkfairy profile image
MilkfairyHeart Star

This I hope is a forum where we can safely with honesty voice our opinions. Offer support by sharing our varied experiences without judgement and with respect.

Griff-64 profile image
Griff-64

I can't say I've ever been bullied, or had any negative comments, just friendly replies offering advice, which I'm grown up enough to know what advice I want to take.

As for "medically and pharmaceutically unsupported opinions" where else do you go if your doctor or cardiologist is not supportive? This site has been hugely supportive to me and obviously others too.

And quite honestly, if I don't like what I see, I wouldn't be here.

I'm sorry you feel the way you do, but I see no evidence of it.

As for experience, one of the times I phoned 111 at 3am on behalf of my partner and found the operator had zero medical experience, and advised me to phone a doctor in the morning, even though I'd explained my partner had the markers for sepsis.

I told her to get someone medically trained to phone me, which she did. The head paramedic who phoned me back told me I was far more qualified than the operator, because I live with, and deal with my partner's illness.

In my view, people living with illness are more likely to give an honest answer.

Sorry for going on a bit, but this is an excellent forum.

Helen_BHF profile image
Helen_BHF

Hi Anahatta , I'm sorry to hear you've had that experience on the community. As a BHF admin, we do our utmost to keep it a safe and supportive environment but the community isn't monitored 24/7. Threads will be removed if they don't follow our community guidelines outlined here: healthunlocked.com/bhf/post.... Hope this helps.

isobelhannah18 profile image
isobelhannah18

This forum has been a huge support to me especially when I have been at a low ebb, emotionally. The kind people on here also provide links to some useful research. As with any research I check the credentials of the people doing it and who's funding it but I am always grateful for the links.

Qualipop profile image
Qualipop

I've been on here since having a heart attack in AUgust last year and found it extremely supportive. NO one has ever given advice on medication or problems if they weren't qualified, in fact most advise seeing a doctor because they are not qualified to give medical advice or to ring the BHF nurses which I have done a couple of times. I've had nothing but support so I am puzzled what's been said to you that could be construed as bullying.

Kristin1812 profile image
Kristin1812Heart Star

A pity you have found the forum like that. It would be a shame to reject the good bits, because you find some comments off putting. I have found it a huge support and mine of information, at a v difficult time.

However, I have also found some comments very directive or even diagnostic, and it puts me off too! I like to go to the up to date trained professionals for that!

I have commented to admin about fellow members giving medical opinions, or diagnostic views. Not sure if it had an effect, but it does still seems to happen, so I now just give the forum a rest every so often, or avoid those members posts.

I worked in the NHS for years, but I am v careful not to stray into advice in my own professional field, but try to keep my comments to my own patient experience,

Marco123 profile image
Marco123

I have been following this forum for several months and found it very enlightening and helpful. I cannot agree with Anahatta's comments at all.

So sorry this has happened to you. I personally have not felt any negativity or bullying. Some people consider themselves " medical experts". Ive found that some times people know what they are talking about and sometimes they dont. I try and scroll on when some comments are not helpful. Everyone on these sites has some sort of heart issue or lives with a person who does. We all know how stressful that is and the meds sometimes " make me feel worse so I can feel better!!!". I try to overlook comments that might be iffy as we are all struggling to make sense out of a complicated situation. I hope you hang in there and give this forum more time to prove its worthiness. 💜

Rosei profile image
Rosei

I have not had or seen any unsavoury comments on this forum, on the contrary I have only seen goodwill.

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