Well being diagnosed with Cirrhosis 22/09/2022, I had my first 6 monthly HCC scan 07/03/2023 I was strangely excited to see the hard work it had taken to lose 3 stone, completely abstain from alcohol, endoscopy exam clear & not a single symptom of my diagnosis! I was met with a STUDENT and the most uneducated nurse I have ever been unfortunate to meet huh ( pay rise) I wouldn’t pay her in chocolate buttons! Did not ask who I was, no date of birth check no address check could have been anyone. I Sit on the bed all excited about the following findings! Student at desk and opens the screen to begin! Nurse sitting over her shoulder and says in the loudest voice Ooooh that’s cirrhotic isn’t it! WTF, sat up on the bed and said WHAT did you just say! Could you have been a little more diplomatic FFS. I then said are you telling me my condition has got worse! No she exclaimed! I DONT know what I’m looking at as I don’t have your information! Well if you turn your lazy arse around there is a computer behind you, firstly you can identify me, then gain an understanding of why I am here Ahhhhhhhhhhh! This damn NHS and country! The only potential slight positive to come out of it, as opposed to prominent course echo texture on previous US, the STUDENT exclaimed!!! That’s smooth isn’t it? the so called experienced body requested to switch to LS mode ( I assume a more intensive setting ???) and said it’s quite faint)???? Can anyone shed light for me?? What a devastating experience and I am furious what can I do about this as to patients charter?
NHS failing : Well being diagnosed with... - British Liver Trust
NHS failing
I live in another country, but I have suffered similar situations. You have to complain.
Sorry this happened, if it makes you feel any better. Over here in the U.S, they're terrible as well. Most doctors and nurses are burnt out of their foreigners who came here to make money and not actually treat patients well and try to save lives. Medical system everywhere seems to be failing and lacking on professionalism. I feel like we're starting to go backwards as a society.
thankfully the posters experience is not indicative of the NHS as a whole. Yes this government is trying to crush it but most nurses, doctors, porters and so on do it because they genuinely care and are incredibly professional even in the most challenging of circumstances. And thank god for ‘foreigners’ who are without doubt the backbone of our NHS.
Do not judge an entire institution by one bad experience, my partner would be dead without doubt if it were not due to the care and compassion of a whole army of NHS staff many of whom were foreigners
Makes sense what you said, also the NHS.and the U.S are totally different. Our problem is people come here to make money, not really treat patient's. If you look at some of the schooling requirements and curriculums of schools outside of the U.S, many are less rigorous, makes it easier to get accepted into U.S medical school because thr Stata on paper look better. Again, where you're at, doctors get paid a fixed rate, I believe, could be wrong. The U.S is a glorified corporation, it harbors a culture that makes people want to come here to get rich and not treat patients. All of these variables combined are causing the U.S health system to self destruction. Doctors and nurses here are very cold to patient's and the government and insurance companies created so many barriers to research and care. For instance, disc replacements were approved in Germany in like 2002. They just approved them here and you can only do 2 levels, 3 levels just got approved in 2021. Artificial mensicus, that has 10 solid years of research in EU and Israel. America, they're doing a study that doesn't end until 2033. A lot of my health issues come from the military. Hard to stay healthy when your back, knees, neck are destoyed. There are treatments out there but the U.S takes 20-30 years to approve items that already showed they can work. Outside influence and greed is killing people in my country.
agree entirely although I would use the term human race as this creeping crumble of our civilisation seems widespread. I couldn’t have picked a worse time to develop a new illness and hold little hope of swift diagnosis and treatment.
Humans in general are terrible, I agree with you, unfortunately, it seems like things aren't going to improve. NHS is different than the U.S. People come here to get rich, not help patients. Doctors here get kick backs, get free vacations and cruises from pharm and medical device companies. They also make a lot more than in other countries. Doctors who go in for monetary gain are always worse than those who chose to go into medicine because they have a passion to help. That's why I chose biomedical research instead of becoming a doctor, because I actually wanted to cure illness, not get rich. It's a terrible time for anybody to be sick as the infrastructure globally is failing. Here in the U.S our food is poison, but the medical companies and government gets rich off illness, so they will continue to keep low standards, very sad state of affairs. I won't even touch the Veterans Health Care, us vets rather die than go get help at the VA. Another ding at the U.S's faling Healthcare System.
Are you getting any improvements with your medical conditions? I read your bio and hate that you're going through all of that. Life isn't fair, dealing with disease since 17!
thanks for your reply. Yes you’re right getting ill so young completely changed the course of my life but I’m lucky enough to have had some good times in life as well. I had a successful career in media sales, I have two adult sons and have been happily married for a second time for the last 13 years. I have two gorgeous grandchildren who know grandma has sore stiff joints and can’t do things sometimes 😝. This current cancer scare is in the early stages just waiting on the next round of results and referral. I hold the belief we are each only dealt what we CAN deal with in life. My personal life history is very sad and far worse than any cancer diagnosis, even that of only a few months ....... so I’m not afraid, well at least not yet.
I fear the NHS reached the point of no return years ago and the pandemic/ brexit combined with economic downturn has hastened the era of a very different NHS. I suspect it will morph into a tiered system of paying!
My step Dad died in hospital recently at 0705 with my aged mother having spent the last 48 hours at his bed side. Shockingly by 0715 staff had ushered her off the ward saying get a taxi home!p without so much as bereavement leaflet!
Hi thank you! I do feel for the student I really do! But the body behind her has the experience and knowledge to be diplomatic and not come out and say Oooooh that’s cirrhotic, we are all built different and I cried for hours after that appointment, I am so proud of my achievements and to have it come crashing down in a fowl swoop was so hard to take! I can’t leave this I have to take it further and demand another scan??? Please advise me guys!
Hello fella...I had a very similar experience with a sonographer doing my ultrasound. Generally i can't fault the medics in the nhs I've seen since my cirrhosis diagnosis was given ...been some lovely nurses etc.
But yes this lady sonographer was equally as rude and impertinent as yours....I just couldn't believe what she had said to me.....and also like yourself, I was so proud of what improvements I'd made to myself, by myself, no aa, or anything. I realise we all have off days...but no excuse for that...I also went back to my car and got upset.
I reported her to 'pals',at the hospital I usually go to.....I never want her to do an ultrasound on me again . She was the first and only one to make sarcastic comments out of all the ultrasounds I've had done. They are not there to be judgemental, but to help us.
My best.chris
Hey Spence. I’m glad to hear you quit drinking and lost some weight. Those are both great achievements and even though I don’t know you I’m really proud of you! Don’t let any ignorance of others tell you otherwise.
I’m in the states and I have to be honest. Depending on which facility you go to you can can experience the same thing here. I’m not saying it’s typical but it does happen often. It’s very upsetting to experience something like you did. I have personally experienced something similiar but not quite as unprofessional as you did. It’s pretty awful that you had to go through that and I’m sorry. I have found that many gastro specialists don’t even know much about cirrhosis here which is why many immediately refer you to a hepatologist if they stumble across the common signs.
I really hope your next check up goes much better. My first one was pretty intense and and mentally taxing.
G.
Firstly you overheard a conversation that was between student and teacher.Neither person is qualified to make a diagnosis or relay that diagnosis to you, that will be done by whoever ordered the scan at a future follow up appointment and looked at alongside other tests and your symptoms .
You have cirrhosis, and always will have and no scans tests etc are going to change that but your freaking out because a nurse mentioned your liver looks chirrotic.
Your in for a rough time every six months if you expect nurses and doctors not to just be matter of fact about your condition.
The HCC scan is to check for cancer NOT to look for improvement or grade how bad cirrhosis is.
Go ahead and complain if you feel the nurses discussion effected your treatment but the senior nurse can't pass on her knowlage without opening her mouth!
A few of my scans were done by a qualified doctor and (at my request) he talked me through them as he done them, now that IS scary!
i am asked details about every five minutes which is bloody annoying but at the same time vital to know who they are dealing with
Hello from Ireland. It’s the HSE over here. Our health system is a farce. The lack of care and mistakes made is just shocking. At my recent ultrasound the radiographer didn’t say one word to me. As regards information about my decomp cirrhosis, it’s like pulling hens teeth. Very bad experience with endoscopy. It is down to our government and how they are running the health system. Can barely get a bed in hospitals now. Patients are not being cared for due to overworked staff which makes them seriously grumpy too. Patients left waiting on trolleys in corridors all the time. It’s certainly not making this disease any easier for me or any other poor patients. All our Irish staff tend to leave and work abroad.
While I can’t help you I really can relate and sympathise with you. We think the care in the UK is better than ours. Try to stay positive
From what you've said, it's exactly the same here in UK!!
Hi lovelyPar for the course I'm afraid, a lot of these nurses are burnt out to breaking point, aren't even necessarily working in their field of expertise and it begins to show. It's not excusing your poor experience however and I would contact PALS about that. In the meantime I'd say you absolutely do need to speak with someone about your current state of health (especially after working so hard to get where you are, well done!!). Are you under a consultant, can you contact their secretary?
The nurses here are fab, maybe give them a call to see what they recommend?
Take care.
Hi Spenc
Sorry you had that experience my Husband as had the same treatment from his liver nurse twice now at his last appointment with the specialist I requested to see the other nurse as my Husband could of died due to her incompetence!
My Husband was rushing into hospital a month ago after seeing the Liver nurse for his Cirrhosis on the Monday he yellow, his Hands were shaking slurring his words, Drove to the appointment and don’t know who we got there in one piece he was all over the road and driving at 20 MAH the appointment was to his to check that the new water tablets which he’d only been on for 2 weeks but had lost 40kg. The appointment was to make sure the Tablets were not having averse reaction on his liver and Kidneys. Fast forward to Thursday he was in hospital with Liver failure Kidney failure HE extremely low blood pressure. He spent two days on a corridor in A&E every corridor was head to foot with beds with patients I know the NHS was bad but it was like a third world country. Hope your next experience is better🤞❤️😘x
Hi, I’m sad to hear that, I feel lucky hope the recovery is speedy 🥰
Hi Spenc
Hope your you manage to live a health life and Look after your Liver 😍, as My husband never drunk alcohol or Smoked and he’s been given 5 years at his last appointment with the liver specialist ❤️😘 Take Care and I hope future appointments are less stressful!
Hi Spenc
Sorry I didn’t mean to come across that way that was the farthest from my mind and you are far from being pitiful anyone how is going through this disease needs support and a caring ear to listen to you, and I hope you have that with family, friends and The British Liver team and it members where all here to help and support one another weather we’re new diagnosed or been have been living with this terrible disease years
I am so very sorry if I caused you an offence it was my intending we’re all in this together ❤️😘xxxx
thanks Spenc you looking after your self and don’t be scared to questions on your appointments wishing you Good Luck Cheers Deb❤️x
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