Hi I've been reading past posts and read that nurses can be quite dismissive of you if you have cirrhosis due to alcohol. Just concerned that I'm going to be treated terribly .
How does the medical profession treat ... - British Liver Trust
How does the medical profession treat you?
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I had alcohol related cirrhosis, that resulted in a liver transplant. Not once did I feel judged by anyone who offered me nothing but world class support, treatment and care with compassion and understanding.
If you respect the people who are looking after you and respect their professionalism, hopefully you will have the same experience as myself.
in reply to TT-2018
Thankyou for that
asked the nurse why the woman was so ill and she said that, oh Cirrhosis of the liver, it's her own fault for being a f🤬king alchy and a druggy! Then a rant about them not deserving pampering chuck them 😤 out to die and keep the beds for decent people 😳🥵🤯🥺😡🤯.
Things HAVE to be addressed. 💪🙏💪
I refer mainly to this post which I find quite shocking . It's about a month old
It was a post by charlie legs
When my husband was dying of alcoholic liver disease in ICU I was taken into a side room by a nurse and his consultant and told my husband needed a liver and kidney transplant to save him. I said "But they don't grow on trees do they ? And why would you waste these precious organs on someone with a self inflicted illness there must be more worthy cases?"
The nurse held my hand as the consultant looked at me and smiled saying" We don't look at it that way, your husband is a very sick man and it's our job to try to save him regardless of the cause."
Instantly my opinion changed, if the NHS staff have this amazing dedication to the care of my husband and others like him, then who am l to question them? He received round the clock care and that same nurse sat with me with her arm around my waist when the time came for my husband to slip away.
Thank god for these angels. Where would we be without them ? ❤🧡💛💚💙💜💖
in reply to
That's good to hear Laura . I'm really sorry you had to go through that with your husband .
in reply to
Thank you. It was very tough at the time but life is lovely now but memories of the happy times in my previous life will always remain with me. We don't dwell on the bad times but l use the experience to help others who come here in similar situations. Our Gps were very much on the ball (14 years ago) recognised HE so knew he had major liver problems, they called the hospital to let them know l was taking him straight in where he was detoxed ( the first of 2 ) If you are polite, show interest and ask questions you will receive the same respect in return. Behave like a drunken arse, that's how you will be treated.. and quite rightly too 😉
All the best
I have alcohol related cirrhosis and all the NHS staff have been nothing but lovely to me . Now I’m 5 years sober and honestly the nurses to to the consultants seem more chuffed with me than I am to myself . I still have terrible guilt about what I’ve done but realise that it’s an illness and some people are far more susceptible to getting cirrhosis than others . Best of luck with your treatment and don’t worry the nurses and everyone involved in your care will not judge and just want you to get well .
in reply to Lilliebell
Well done Lilliebell xx
Well, I think it depends on the individual. Medical stuff is mostly professional, so you're not confronted with their opinion.Other than that I've experienced some unfriendly and harsh comments. The term liver cirrhosis itself has such a negative connotation that I don't use it anymore.
Just some examples:
"Liver cirrhosis? Wow!!! I just don't see you being one of those homeless drunkards on the street!"
"How much did you drink?!??? My grandfather had 6 beer each night for fifty years and even he didn't get cirrhosis!"
"I'm so sick paying for people like you! Party all the time and when the party is over, society has to pay the bill! Because of your care there isn't enough money for sick children!"
And yes, those are real statements by real people. So, I never talk about my disease in real life anymore.
in reply to
I must say when you are put in this position your viewpoint changes somewhat. I for my part am too unwell now to mix or socialise so comments will only come from a health care setting.
I will only tell people I know . .
in reply to
Times are changing. There isn't the stigma attached to alcohol abuse these days. It can affect anyone ...... rich and poor. It's the reason behind the addiction which has to be addressed in order to cure it. Sadly for all too many who don't seek help soon enough, it becomes a death sentence.
TT-2018 in reply to
But I expect that none of the comments came from the medical profession?
Liver cirrhosis is one of the fastest growing illnesses and these days, the most common cause is poor diet, it has taken over alcohol as the leading cause.
You are also more likely to suffer from cancer due to alcohol, than cirrhosis.
It is definitely time to educate people.
in reply to TT-2018
Well, I remember two rather surprised questions from medical stuff, once at my dentist, other time my gynecologist. At the dentist I mentioned that a tooth extraction could get tough as my platelets being low due to my cirrhosis. First question: "oh, you didn't tell us you are hepB?" I responded I'm not. She cringed, but didn't say anything.
At my gynaecologist, I still had ascites at that time. The doctor told me to clarify that. I told him that I know what's causing it, liver cirrhosis. He looked at me in a shock: "but you're not an alcoholic, are you?!"
I think we're not really that far today... There's still so much stigma and lack of knowledge.
Take what you write about being overweight. People really underestimate it. My father is overweight. I told him to ask his GP about the danger of fatty liver. His GP told him to relax, fatty liver is "nothing to be concerned about".
I was told Scarring was spotted on a scan by a Consultant in a hospital corridor Totally shocked I asked his registrar for clarification and she said to forget it - it happens and its not effecting your blood results
Came home-Googled-went hysterical-ended up in Hospital after breakdown and still don't know much
Insisted on being referred to a Liver Consultant and 5 months later had a virtual appointment with him and he confirmed Scarring consistent with Cirrhosis but just get on with my life as Liver function is totally normal
Thank you NHS I only worked for you 25years
in reply to Patharrbon
So with your 25 years experience, where does the NHS need to be improved ?
Most with alcoholic cirrhosis will have experienced stigma from medical professionals. Not from everyone or all the time, but it's no secret that alcoholics face a stigma other patients don't. You even see it from some commenters here. Bias can also be implicit, such as when docs simply don't believe or dismiss what a patient says because of alcoholic history. Who believes an alcoholic, right?
You'll see the stigma discussed among NAFLD/NASH cirrhosis patients on various forums, who often complain of being mistaken for alcoholics when they receive treatment, and being at the receiving end of caustic remarks.
The stigma perhaps is slowly being recognized as wrong and counterproductive, but it's still very real and widespread. There is variance among medical centers as well. Transplant centers obviously have elite liver professionals, and their behavior reflects that. Here in the states, my treatment at a transplant center (not being evaluated for a tx, just to see a hepatologist) was a world apart from how I was treated at my local hospital.
in reply to Str8jacket
It's also worth remembering, when someone is alcohol dependant they become paranoid and anxious, think the world and his wife are judging them, looking at them and talking about them.... it's the nature of the beast ... it's what alcohol does to the brain, so in many cases the way a certain look or the way something is said, may only be the way the patient is interpretting it.
Str8jacket in reply to
Not many (any?) of the folks here with an alcoholic past strike me as particularly paranoid or anxious. To suggest alcoholic cirrhosis patients imagine poor treatment is absurd, and another example of the stigma people here describe. Even those with no alcoholic history are targeted by it and have brought it up. No one here is qualified to deny anyone's experience.
Hepatic encephalopathy, on the other hand, can cause dramatic personality and behavioral changes for *anyone,* recovering alcoholic or not. And nothing causes anxiety like coming down with end stage liver disease, alcoholic or not. Ask around, don't take my word for it. That anxiety never warrants treatment with any less dignity than what is owed to any human being.
in reply to Str8jacket
I've had far more experience with alcohol dependants than you have. Believe me they suffer with paranoia and anxiety more than they could ever admit to because they can't recognise or see it in themselves. I don't need to ask around l have seen it face to face .... and not just with my husband. Remember, l spent a lot of time visiting my husband over the course of 4 years, surrounded by other poor souls in the same boat suffering the same symptoms. It's all part of the condition and those who have been through it will know and understand exactly what l am saying. And you have only been on this forum what ......? A few months? Like you said. If you don't like whats being said .... scroll past !
in reply to
Hi laura I fully appreciate you had a horrible horrible unimaginable experience with your husband over four years . I do not doubt your testimony is true for one second .
However what is clear from what I have been reading is that you dont have to be a raging stereotypical alcoholic to wind up here .
The majority of us have no difficulty giving up alcohol and dont have to go what your husband wrote through interms of detox.
I have great respect for the medical profession I have good relationships with my consultants . I don't think it is helpful to say that any us would behave like drunken arses. It is offensive and I am already in a vulnerable very frightening position I dont think anyone would ask for.
Str8jacket in reply to
You responded to my comment. Good grief.
I have stage 4 cirrhosis. When I vomited blood at home, the first question from the paramedics was how much did I drink. They didn't believe me when I said nothing. They asked my friend the same question when she arrived and the doctor in resus asked the paramedics the same question. I always clarify that I have non alcoholic as people do look at you badly if you say you have liver cirrhosis x
in reply to Scrags64
They HAVE to ask the question in order to rule out particular causes and establish the course of action to be taken. So an initial alcohol detox will not be required... happy days, no tick in that box needed.
Scrags64 in reply to
I think it is more their disbelief that my liver could be so knackered that I was vomiting blood and clots at home and that I had never touched alcohol. My friend and I independently reached the same conclusion that they assumed I had to be an alcoholic because of the state I was in.
It's not right that having an alcoholic past should make a difference in how patients are looked at, but it's the sad truth. And the broader stigma against alcoholics keeps those with drinking problems from coming forward and seeking help earlier. A vicious cycle.
in reply to Str8jacket
It may be in the States but not here
Hi I was treated appalling so, I still have night tremors and absolutely had no idea how badly Liver patents in The Royal Stoke can be treated My then consultant when I was admitted with upper GI bleed, blood transfusion that ended up in my abdomen and contracted COVID as they put me in a COVID Bay, in the presence of other professionals such as Nurses and Dr told me very bluntly that I was End stage 4 liver disease, she said I would not be suitable for a transplant and it will not regenerate, my next of kin were not contacted not even to of been present on a Zoom meeting, I was absolutely devastated, she abruptly left the room, I have always enjoyed a drink but didn't consider myself an alcoholic , many tests were done, I did not have any withdrawals from alcohol, jaundice, or club finger nails, the Alcohol liaison team did not feel I needed there support but could ring if I struggled, , in 1997 I had a road traffic accident, I remained on strong painkillers right up to being admitted November 2020, one Dr felt it would of been o contributory factor as they are packed with paracetamol which in turn damages the liver, I have not needed to be readmitted with acites since December 2020, my bloods are in the normal range, they informed me I am Coeliac which also can be contributory factor in Liver Disease, my Heptologist relayed it was a chicken and egg thing , which came first, my Consultant has since left the Trust and thankfully I have a new Consultant, I would not wish my experience on my worst enemy, my husband and grown up children are still very traumatized by the whole experience and fear a readmission and repeat of such unprofessional, uncaring professionals not that they tarnish everyone who works so hard and are so dedicated to the care they provide in the Trust.I hope you have a better experience and I hope my experience is an exception ,if that is at all possible. X Take care.
That sounds absolutely awful.
in reply to Tia2021
Should not be happening in this day and age 😠❤️
in reply to Tia2021
So sorry about your experience
I was admitted to hospital in 2018 with Cirrhosis and had paracentesis nearly every week until I had my gift of a liver in December 2019. Not one healthcare professional, and I still see them regularly pre or post transplant ever made me feel uncomfortable or undeserving! They have and are all amazing! I, on the other hand felt undeserving and initially refused the idea of a transplant, again they were amazing! You may get some unkind comments, but in my experience none from the NHS staff🙏👍
Was hospitalised 2 weeks ago due to atrial fibrilation which they believe was brought on my alcohol. No issues with doctors/nurses there, all friendly etc. Depends where you go I guess.
in reply to
.....And how you are towards them 👍
I like Annalucia and others have to stop myself saying the word cirrhosis as it does cause negative thoughts from others. I've had nurses ask how much I drink? How did I catch this? What is AIH? You must have done this to yourself ! People move away from me. I know say I have auto immune and it's complicated. It is hurtful and upsetting these reactions. In regards to nurses including specialist appointments for other issues, not just my own doctors, there needs to be education.AIH is autoimmune hepatitis. Also have PBC which until recently was primary biliary cirrhosis ( changed to cholangitis ).
Might be general thing.I've spent 8 months now going for multi blood tests, ultrasound, mris etc.. And still have no clear guidance from gp, specialist etc of what's going on, what test results mean, what l should be doing diet etc wise.
Only advice is no alcohol.. I hardly drink anyway! Diet does affect how l feel!
Given now a diagnosis blocked bile duct and gall stones.. Shouldn't specialist be able to give a link to very specific advice and explanation? They'd only have to that once across whole UK and give link to that info. Instead.. Silence.
hello. all. not posted for a while. while I was being treated at North staffs,the vast majority of nurses,ward sister etc were absolutely great. there was just a couple of the nurses that u could tell had some sort of problem with alcohol cirrhosis patients myself included,. which didn't seem quite fair,at the time,and still doesn't . but really couldn't fault them at all. my gastro consultant,was great....rather abrupt,and straightforward.but I liked that. u knew where u stood with her. but ultimately people should be treated fairly,whichever background you come from. chris
Hello, in my husbands experience, he's been met with a degree of suspicion at times, but as we all know, unfortunately the nature of the illness of alcoholism tends to sometimes include an amount of denial and lying. I respect that many times staff have been met with this. However, we have always been treated extremely kindly and seriously. They really respect you once they're convinced you are treating the diagnosis seriously. Thankfully in my husbands case, he hasn't suffered from any addiction but we did feel as though he had to kind of prove himself a bit.
I am closing this post to replies. There have been several reports from members. The stigma of alcohol related liver disease is very much at the forefront of the British Liver Trust campaigns, and I appreciate this is a very emotive topic, but this should be a safe space for forum members which is free from judgement .
Trust9
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