Repost re Corona Virus (COVID-19) - British Liver Trust

British Liver Trust

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Repost re Corona Virus (COVID-19)

Trust9
Trust9Administrator

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:

britishlivertrust.org.uk/co...

If you do have specific concerns or worries then please do contact NHS111 and also your own liver specialist teams.

Thank you for your ongoing understanding.

Trust9 and team

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28 Replies

Hi

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?

Miles

Hidden
Hidden in reply to ThreeSmiles

👍👎🙃

ThreeSmiles
ThreeSmiles in reply to Hidden

If you say so....

😀

Hidden
Hidden in reply to ThreeSmiles

Don't make me say it again! 🙄

ThreeSmiles
ThreeSmiles in reply to Hidden

If you say so....

😀

Hidden
Hidden

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.

ThreeSmiles
ThreeSmiles in reply to Hidden

Hi filly

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.

Miles

Hidden
Hidden in reply to ThreeSmiles

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

AyrshireK
AyrshireK in reply to Hidden

Weakened immune system including those on steroids etc. is now mentioned in the .gov guidance on Social Distancing. gov.uk/government/publicati...

ThreeSmiles
ThreeSmiles in reply to Hidden

Sorry to be pedantic Lynne but he did not mention liver disease.

Hidden
Hidden in reply to ThreeSmiles

If he didn't then it must hay been health secretary or someone being interviewed unless it's my brain fog. I have just read it it, now though

Hidden
Hidden in reply to ThreeSmiles

Rerun, take2. Don't mention LIVER 😜

Hidden
Hidden in reply to ThreeSmiles

It's on gov. UK covid-19

Hidden
Hidden in reply to ThreeSmiles

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!

ThreeSmiles
ThreeSmiles in reply to Hidden

You what! Where are you off to! Do tell!

Hidden
Hidden in reply to Hidden

Maybe the Artic .... away from everyone ?

Take care Fili xxxx

Hidden
Hidden in reply to Hidden

Suffer in silence. We are isolated already.

"For ye suffer fools gladly, seeing ye yourselves are wise."

Let's just bury our heads in the sand & hope for the best.

Poor communication has a profound impact on patient care.

Barriers to communication Fears Unleashing strong emotions. Making things worse.

TrustK 🙄 I almost ate my words. So gov. has just been updated today, bout time to. 🤔

ThreeSmiles
ThreeSmiles in reply to Hidden

But on the post Cobra debrief they didn’t mention contacting your doctor - they said go on 111online (and don’t ring 111)....

Hidden
Hidden in reply to ThreeSmiles

Correct if you can get through online!

Is anyone's internet already slowing down? Mines crashed twice!

Hidden
Hidden in reply to Hidden

Do you know Spike Milligan's post about infectious smiles? It's not about liver though, but it's still relevant.

ThreeSmiles
ThreeSmiles in reply to Hidden

Nope I don’t- when I was younger I never liked spike m but now I can see he was quite funny ....but I don’t know that one but can have a good guess 😀👍

alfredthegreat
alfredthegreat in reply to Hidden

It's a lovely and meaningful poem :-) :-)

gertrudestein
gertrudestein in reply to Hidden

Hi Fili,

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?

Hidden
Hidden in reply to gertrudestein

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!

Hidden
Hidden in reply to gertrudestein

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.

gertrudestein
gertrudestein in reply to Hidden

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.

Hidden
Hidden in reply to gertrudestein

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’😅

Trust1
Trust1Administrator in reply to Hidden

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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