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British Liver Trust
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Concerned about expert patients on forum

Mmmm, reading some of the replies of late to members posts have me a little corncerned?

1. In particular two members of the forum seem to use LTC “talk”. Are their spies amongst us 😉

2. I’m also concerned that particular indivus are acting as expert patients when giving “medical advice” to members, especially new members?

I consider myself an “expert patient” however would never dream of “advising”. I can share my experiences and share how and why I did or didn’t do certain “things” but I know my boundaries?

I would ask tbe moderators on the forum to, perhaps, remind us and or individuals that this a support group and not a outpatients clinic.

22 Replies
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Hi Poobear69

We often post reminders to members that this forum is not a medical one and cannot give direct medical advice.

This information can also be found on our pinned community guidelines.

Best wishes

Trust1

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Hi Poobear.

Great name.

A lot of the time when new members join it is because they have either just been diagnosed and are looking for advice and asking question. They are looking for people who understand what they are going through and reassurances. The Trust often put reminders up to let people know this is not a medical forum. However I’ve always understood it to be that we can give advice and support based on our own experiences or our partners experiences.

Have a good new year

Julia

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Hi Julia,

I agree with you. I rarely see anyone telling someone to do something, it is more of a "this is what my doctor does" and almost always followed by check with your doctor first - don't do anything without checking it.

Wishing you a Happy New Year,

Mary

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I think we all need to remember that the only expertise any of us can offer is based on our own experience. This varies enormously given the complex nature of an organ like the liver and the huge variation in medical treatments across the country and beyond.

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What's 'LTC talk'?

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Yes I would like to know what LTC talk is and also what exactly do you think the "spies" might be up to? The idea of there being spies is quite exciting admittedly. :)

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It was completely “tounge in cheek” . LTC’s are Livrr Transplant Coordinators at all the transplant centres across the UK. There purpose is to support and a lot more pre and post transplant individuals.

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Does LTC talk involve using acronyms that no one else understands..?

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Gary has, i very happy to share with you, because it’s not medical advice, that LTC means Livrr Transplant Coordinator. Please, please do not hesitate to ask me if any other acronyms confuse you and I’d be happy to explain. Best wishes for. 2019.

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Excuse grammar!

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So no spies then? That is disappointing. I also was replying "tongue in cheek". However, whilst for the most part people do only relate their experiences, there are occasionally posts which verge on medical advice, but then this is inevitable when sharing information. I always say "as far my understanding goes" or somesuch phrase. My biggest concern is that some of the posts detail what happens when people have advanced conditions and they are being read by newbies who have the proverbial scared out of them. A little less detail would be nicer I feel, but this is my preference (and I'm not a newbie).

However, no system is perfect and I think by and large it is mostly right. :)

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Hey MC1189. I just sent a newbie your way yesterday that was looking for advice I just didnt have. Not sure if she got a chance to messege you. And btw how ru?! 😊

As for the post I agree fully. Though sometimes I have to admit its almost impossible when someone comes on the site to say their dad or mom is in decompensated liver failure and is still drinking to not tell them the truth that it will only end horribly. But I dont even see that as medical advice as much as it is a truthful eye opener born of pure common sense. But I do agree that for the most part when I see a newbie that comes on the site and says they had a frightful scan (especially when alcohol is involved it seems) that they get a verbal bare bum spanking by our members and are told they are fools for drinking and their only fate is a dishonorable undignified doom show of a death. Especially when it comes to members who seem to have a mindset even if they dont say it aloud that any and all alcohol consumption is the "devils work". I get really pissed about that. We have no right to be telling anyone one what an outcome can be or will be. (Again barring the comment I made above). For the upmost part I think our members are very very very good at following the guide lines and being respectful and kind and considerate to the new folks on the site. I mean it must be true as so many new members write posts on their own accord to simply give us praise and compliments for our help and support. We all may push though boundaries sometimes but I dont think anyone is trying to be a doctor more as some are just really friggin knowledgeable and for all of us it hits home as we live it and though we CANT do it it's hard not to tell someone who has been very misinformed that they have been misinformed. I have my hepotologist tell me often when I start in a "question path" to her that I'm tapping her out of knowledge and shell have to look into it. Which is only natural since we probably read more about liver related stuff in a given day then they may read in a week because it's on our front steps we dont get to leave it at work. Let's also never forget we are only human. I can admit even myself that when someone posts a picture of the pristine white sclera of their eyeball who is convinced they are dying of jaundice that it's hard not to tell them they dont have yellow eyes in the slightest measure of imagination. Instead i word it as we should " I do not see any yellowing of your eyes and in my opinion they are white but I am not a doctor and if it is worrying you please talk to your doctor as soon as possible." We all are doing our best and with good intentions. Sorry for the novel everyone but I felt I needed to say that. I'm sorry if I have ever crossed the line and if I did it was unintentional and only meant in good faith and love toward a fellow member in hardship.

-Phoenix

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Hi Phoenix, as yet am I unaware of anyone coming to look for advice, but I shall look out for them. I must admit that I don't tend to read the posts regarding alcoholism since I have no experience of this either first or second hand. I am aware that with AIH (my condition) for instance little emphasis is put on the fibroscan scores and yet the fibroscan seems to be much more widely used with people having other forms of hepatitis. I know why they don't use it for AIH, but don't know why then people seem to rely on it so much for the other forms. Clearly a large gap in my knowledge and since this is the case, then I know there will be others, so I choose to avoid commenting as I could well be misleading people.

Am currently fine, with a few issues(haha!!), many thanks for asking.

I agree with regard to the yellowing of the eyes scenario. What concerns me is that many of the people asking seem to be very young and I wonder what has prompted them to ask. I agree that many people are well intentioned and their only aim is to help (when advising), but we must resist the urge to comment on people's results as I know I have results that are normal for me, but may well not be normal for others. I think very often people are very anxious about what the numbers mean and don't/ can't wait to see the doc/hep/gastro for an explanation, so come here. Me, I prefer to wait and see what they have to say, ask questions and accept that if it was urgent, they would contact me.

Hope you had a great Christmas and all the best for the New Year. :)

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MC1189 yes the member i sent your way was inquiring about something to do with AIH and I hadn't the foggiest on how to answer her. I hear you on the fibroscans. The only writings I do on them is to let people know that fibroscans cant diagnose squat on their own. I'm not a fan of the machine personnaly though I have never said that publically as it would create a bias. But there are so many variables in them that I think they truly cause poteontially unnecessary fear and anxiety in their results. My advice on those to members is always that only a doctor can interpret them with the whole clinical picture included.

As for the yellow eyes I ask myself the same exact question. Why do such young people find themselves fearing things that we wouldnt of even thought of at their age. I do blame alot of that on the internet in the sense that I could be reading a junk tabloid article about "Why Hollywood wont cast Edward Norton anymore" and when the article is done I find myself looking at the next article and its labeled something like " ten signs of liver disease not to ignore" and it lists these symptoms that are so much apart of many illnesses including the common cold that everyone who had been at a party the night before reading it now thinks they have liver disease. ( dont ask why I was reading about why Hollywood wont cast Edward Norton anymore lmao).

But I can faithfully say that I almost if not always tell people that they should consult a doctor and remind them that I am not one. But I am in full agreeance about people commenting on others results and very much agree on why people come here to ask for interpretation. Its exactly as you worded it in that they get so anxious wanting to know what the results mean that they cant wait to see the doctor. I also believe that sometimes they are hoping to find that we will have better answers as we are people with the disease or that they assume we all have the exact same blood abnormalities and they can gauge what they have and dont have compared to our numbers almost like a checklist.

I know you havent had the experience in the alcohol end of it as also I have no experience in the autoimmune side of it and to be honest I always feel most for people in your circumstance because you did nothing in your life to cause this to happen at all. It just did. I only mentioned the things I did because it seems as though some people are quick to make people who got the disease from drinking feel like pondscum as if we all intentionally did it to ourselves on purpose. Which is angering to say the least. Most frustrating when people forget that cirhosis in drinkers only happens in about 10 to 20 percent of them so in all reality the person passing judgment could very well drink just as much or more but since they dont have liver disease they make you seem like you over did it and they didnt because if they did they'd have liver disease. It's hard to deal with a disease caused by a disease and have people make you feel like a junkie for it. In my case anxiety and depression. I worked hard I did all the right things I'm well educated and a good family member. I only drank on the weekends while playing my music and hanging with friends until I made the mistake of treating my anxiety and depression with it. So I do get pissed when people out there and on here make people in situations like mine feel like crap and that we deserve it and we will die horrible undignified deaths. Its total BS. Especially since people seem to leave the people who have nafld from obesity alone even though it is also just as equally a " self induced liver ailment" and certainly dont bash them for slipping up with their dietary choices like they do with the folks that slip up on drinking. Not that ANY bashing should happen to anyone.

Btw love I'm just venting a bit and I am in no way directing this AT ALL toward you. I have had nothing but kind experiences directed toward me personnaly on this forum and I have met so many of you that I know care for deeply. But I do see some new member getting a strip ripped off them for being in the same place I was last year and my heart breaks for them because for most of them they come here for open arms not to be judged. And that's how it should be 😊

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Your last paragraph really touched me, thank you. Who has the audacity to “stripp new members off”.Tbe more I read the more concerned that this forum is “led” by self opinentated tin gods? I can assure you I will rebustly challenge ANY individual that tries that bullying BS with me.

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So very well articulated. 👌🏼😊

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Amazing? Alcholics always get in the neck?

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I also think when not often thankfully we are graced with a troll type who insists they can carry on drinking heavily by their Dr, they are fair game to be answered back. , if they are not I fear newbies may think oh this is the best comment ever. The same for anyone preaching stop your meds, even after being hospitalised for 6 months, oh and consider themselves to be an expert in nutrition because they have a certificate! So many members jumped in to answer these two, not with medical advice but a reality check.

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There was already a lot of commentary regarding the second person that you refer to and I have to say from my own reading they were not preaching give up your meds, but instead stating that they had chosen to do so, and that they were still here to tell the tale. I have to say I was quite appalled at the way many people chose to give them a so called "reality check", because as I saw it they were only celebrating the fact that it had worked thus far for them.

Whilst you may find their approach shocking and clearly a lot of people also did, there may well be others who read the board (yet never comment) who are looking to see if anyone else has taken this approach, alien as it is to most people from a Western culture. Surprising as it may seem, there are many people who do not want to take any meds and indeed this is one of the biggest problems for many doctors to deal with as people refuse to take all or some of the meds. I have seen people asking for advice with regard to this. I did not see this person as a troll.

I have also spoken to more than one person in the medical profession who has seen the leftover meds when they go to a house after a person has died. Stacks of them from not taking them for long periods of time, yet still collecting them!

I am happy to accept that some choose to stay off meds for their own reasons and that whilst I may not choose to do that myself, they have made a choice and they are living with that choice. When I read their posts, I did not read it as giving advice to do the same.

I do hope that this will not start another round of unpleasant posts. I merely wanted to state my own point of view. Western culture is fixated on a medical response only, but for some there is another way. All the best to you :)

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I agree that some conditions seem to be not yet medically curable or treatable. One of the most serious in my humble opinion is mental health. some chose street drugs, some alcohol, not down to no 'cure' but a means of escaping their mental trauma. Arthritis is also a difficult condition to treat, I am currently relying on guided cortisone injections in my ankle and hip.It states very clearly in my letters, this is only a temporary relief. The sun helps my skin immensely, , a natural source of relief. Some conditions which are potentially life threatening come into a different sphere. I would not consider any alternative treatments unless okayed by my consultant. We are all free to choose but people need to make it very clear from the outset this is not in anyway a substitute for any Liver consultants advice. Always check before considering. CBD is perhaps the emotive alternative today. Momentum is gathering on this and at last its being scrutinised as a real potential treatment for many conditions. I was diagnosed with ME. My GP made it his mission to find things to help me. He researched so much. Told me to save my money, people with chronic conditions are easy targets, It is down to individuals but I fuly respected is opinion. Liver disease is a compex medical specialism.. I asked for a second opinion as I received no follow up appointments and no fibroscan appointment. It was well warranted and now I feel I am getting excellent care and advice. I intend to ask about CBD oil and cannabis use on my next appointment in 3 weeks time. The troll ref was more about the guy who is pro drinking and said his Dr okayed it! I would never have followed the second comments story. My concern was in case newbies read this and considered it sound.

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Not got time to respond at mo. Will do so when I have time. Thanks for taking the time to respond :)

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PS I sometimes put oats in a stocking leg, tie off and add to my bath, ease sore and itchy skin. I recently started a new med for my psoriasis. A weeks supply costs the NHS £500 per week. I will be returning the unopened box, initial doses were separate. I had a bad reaction to them had only taken 2 of the full dose.Likely they will be binned by the hospital as once meds are dispensed they have to be destroyed. I have also stopped taking paracetamol and ibuprofen. Not prescribed for my liver, so only take 2 paracetamol when pain increases, in joints.

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