I really hope you don't mind me making the point below about criticism of the trust and one of their primary 'terms and conditions'
The reason around why some photos are not allowed is simply that this is a peer to peer support group and not a medical forum. The idea is that members share experience and provide moral support - almost so there's a 'virtual hand holding' and people feel less alone on their journeys.
The wonderful Clinical Nurse Specialists (The BLT 'Liver Nurses') are not allowed to give any advice that could be regarded as an online diagnosis. This could be seen as gross misconduct and would NOT be covered by their Medical Indemnity Insurance.
When members post pictures asking for diagnostic feedback, both The Trust and healthunlocked become legally exposed because of the risks around giving the wrong diagnosis ...and therefore have to be removed. This is true even if other members try to diagnose each other as The Trust is still held responsible for the nature of the conversation.
This place can still be a safe and encouraging space, where the vast majority of the questions and answers don't breach this necessary rule.
Whilst the trust cannot make too much of this and overplay defending themselves for fear of alienating this merry band - we should do so on their behalf. They are a charity and we are adults (all be it adults who can be understandably emotional) and I believe we should cherish and respect them and their work.
With all good wishes
Chris
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chrisw740
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13 Replies
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Chris I believe the subject was aired and forgotten, I appreciate your good intentions but feel this post is simply pouring fuel on a fire that was dying out.
I would ask an admin to lock this thread as there is no need to see further comments that might cause any rifts. We do not need any more unnecessary upset. And should let sleeping dogs lie.
Dave defended you when you called me the poster boy for the British liver trust. He said no not Chris you probably read it wrong. He was also the one who was upset about the trust when continually being advised against having a meet (not me) after putting the work in. You were one of the people who I was getting the bad vibes from. All adds up when all your fears are starting to leave you from actual death. Sorry everyone that is why he left to try and stop me from writing this.
Because of the worrying increase in criticism of my NHS colleagues, I feel it's important to speak up in their defence... including our fantastic BLT nurses.
Also. I meant the compliment I gave you about being the poster boy for positivty (in other words a wonderful example of good humour) you truly are and it's great to have you back.
Anyway, I really hope you're less sore today and your recovery continues well.
Alright ChrisI had got emotions going off left,right and center. Felt bad for being happy, some comments (not yours) came across as though I was being analyzed. Didn't know what to think or do about posting a picture whilst in pain. Couldn't get a hold of the transplant team.
Anyway I'm sorry for being a little annoyed with the trust (that is not me, at all) Dave n I was actually going to chat about fund raising and things.
Let's just have a good Christmas (the best we can) and forget about it.
Thanks so much for this reply Danny... (and for more of your typical kindness and honesty)
I imagine that you will experience some intense feelings moving forward, it's incredibly understandable. Your naturally sunny outlook will help you so much but you're allowed to also be vulnerable and upset. You've been through so much. Wanting advice was absolutely normal. As you say, let's ignore the negatively and stay afloat together.
Also I think a fundraising drive for BLT is a brilliant plan. The UK's not for profit organisations have suffered enormously in the last 20+ months. Opportunities for charity events have been hit by lockdowns and social distancing, whilst the need for our charity's services have never been higher.
I know Richard has previously reminded people that use Amazon - that they can nominate BLT as their charity of choice if they shop via Amazon Smile.
It would be great to come up with some more suggestions to raise money for the trust.
I asked a question about my dermatitis and I was asked to take it down.- I'd already figured out what it was, I didn't want a diagnosis I just wanted know from others that had experience with this.
Quite aside from any particular incident that this comment referred to, I completely agree about the ultimate purpose of this group, and the dangers of diagnoses and actual treatment/medication recommendations from non-medically qualified posters. Yes, not everyone receives good treatment and/or help from their medical professionals, whatever the specialism, as I am very well aware, but there is a line to be drawn between describing personal experiences and giving medical instructions. I have great reservations about one of the HU groups I follow, because instructions, yes, instructions are given regardless of the impossibility of knowing the complete health history of the person being "advised", and if you do not follow this "advice", or, even worse, have the temerity to disagree with any advice being given, you are immediately taken to task and criticised. I even had my political stance unpleasantly brought into question following one post I made!!! I do dislike it when the admins trot out pages of instructions, and links which are not always medically based or truly independent. This group, like most others, came as a welcome relief without feeling you were constantly standing outside the headmaster's door.😁 Rules are clear and fair, and admins are supportive, not critical. Members are great: friendly, encouraging, informative, and, in so many cases, simply inspiring. Reassurance is here in spades for anyone who needs it, with correct medical links given when necessary. Admins and all group members, give yourselves a well-deserved pat on the back! Best wishes for Christmas and the New Year to you all.🎄
Hi Chris I don't feel you should have to even start your message with "I really hope you don't mind" good on your for posting and help to balance the BLT bits and bobs. Occasionally people read things the wrong way ie messages have no emotions unless you bung a few 🙂's and a few 🥴's or even a 😴
Well done for being a proper gentleman and keeping it grounded. "Grounded" is a good word, I like that. So I'll leave it there and if anyone comes back at me for this then they can jog on!
Being an ear for people that are scared stiff, or just a bit of encourment and to know others are there to talk to makes SO much difference. I was scared stiff the first time I posted and it was one of the best things I every did. I really appreciate this site, this forum, I have learnt millions more than any medical person could tell me (NO DISRESPECT MEANT, THEY ARE JUST TOO BUSY)..so long may it last and if that means a quick balancing post then good.
There is too much negaitivity in the world as it is, as others have previously posted.
Be gone foul negativity, I'm going to post a picture of my bum to see if there is anyone that recognises the anchor tattoo on my left cheek! 😂 NOT REALLY! SORRY 😁 😁😁
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