Let me start by acknowledging fully that Corona Virus and the disease covid-19 are quite possibly one of the most important health issues we have ever seen.
It is wholly understandable that everyone needs and wants to ask for help, to discuss, to consider everything about the issues.
However, on our forum if we allow general Corona Virus discussion, it could within hours drown out everything to do with liver conditions
Further, there is no knowledge or experience here which is in any way deeper or more helpful than appears elsewhere.
Can you therefore please refrain from posting links to blogs, social media etc as it may indeed cause unnecessary worry and may be factually incorrect. Any existing posts will be closed.
The situation is changing on a daily basis and we will try to keep you all informed of any direct or specific guidance. In the meantime please follow government/ public health instructions. Here is our link to this:
But Boris etc said just now not to ring NHS111 unless you are in a bad way..... you can go on 111online but can’t remember seeing anywhere in there where you can ask questions?
Does Trust 9 know how many people who post daily on this site have received a payment from Health Unlocked to tell about how their lives are going? I do wonder because I was invited to get such a payment and I declined: it seemed a bit unethical to me for people to be unaware that they may be replying to what may be considered “bait” to attract a response for the benefit of HU’s “trusted sponsors”.
I ask because you have closed down discussions between people who honestly had a need to communicate with others at a difficult time. It doesn’t make sense to me.
Can’t say I fully understand your first paragraph but that may be because I haven’t been asked!
Re your second paragraph I agree we should be allowed to discuss the topic of the day. Despite several links we STILL haven’t been told how much at risk those of us who are on immunosuppressants really are. Have we? I haven’t seen it and we weren’t mentioned at the post Cobra debrief on telly this afternoon. At that debrief the Chief Medical Officer (I think that was his title) gave the definition of vulnerable as being (excluding age) those with Heart disease and those with kidney disease.....immunosuppressants were not mentioned.
Yes, liver disease was mentioned but not immunosuppressed, my son has Crohn's and us on azathioprine and infliximab infusions. He hasn't been told anything and cos he works at the co-op at present even if we have a lockdown he will still have to go into work. He said luckily he goes on his bike so isn't in contact with people going to and from work. Take care Lynne
Why not ask Trust to explain it to you how and why people get a payment from Health unlocked for diarising their experience of day to day living with a debilitating condition? I don't want to miss out any of the details by trying to explain it to you myself. I'm away now for 6 months!
I must say I feel a little uncomfortable at the thought that some people on this forum may be being paid to post. The posts of Ayrshire Katie, for example, are wonderfully informative and well written and I assumed that she was doing it out of the (very great) goodness of her heart. Am I wrong?
Agreed about Katie’s replies to others asking for info to be shared and many others too. It’s the posts that just seem to require people to make a response and trigger a thread. Perhaps a device for when a specific sponsor wants something and perhaps just when there’s a slump in activity on the site. There’s a lack of transparency anyway. I hope you pursue it!
There’s a big difference between posts and replies. Many people don’t seem to realise this. It’s the posts, not replies that concern me. I’d like to see them marked as being paid for by HU where they have been.In advertising it is required to be clear that it IS advertising so not to mislead people. Why wouldn’t the same be so here? For example if someone posts saying they’re feeling down and wondering, ‘just curious’ if anyone else is feeling the same and do they take meds for it? Then kind helpful people troop on saying what they take or don’t, that doesn’t seem just to me if they didn’t know how the post came to be placed.
Thanks for the clarification. I see now exactly where you are coming from on this and agree with what you say. Many thanks to all those who respond and are genuinely trying to help/advise/cheer up the rest of us.
I agree with you. These people are giving a great deal in a truly altruistic way. I’m very grateful for them and to them. As you say, Ayrshire Katie is a great example of someone who makes a huge and generous contribution here in her informative, objective, factual and referenced replies to people who need it. If we had a vote I’d say she deserves to be paid! And almost entirely, posts and replies seem genuine to me. I’m so pleased that someone ‘gets it’😅
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Please can you PM me any request from HU about members being paid to discuss their symptoms? The Trust have NOT been informed of this.
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Liver cancer and Covid- urgent request
