I'm having to choose how best to approach this subject without professionally treading on someone's toes.
I happen to live in an area that has a very high mortality rate when it comes to liver disease. I am presently supporting the "Love your Liver" roadshow coming to my area later this year. To try and do something about this plight, I've written to all three of our MP's highlighting the fact that a lot of their constituent's are dying each year unnecessarily due to late diagnosis of liver disease. Sadly their response has been very disappointing.
I wanted to try and be a lot more pro-active. While the "Love your Liver" is a wonderful opportunity, it is only a one day event, for 6-hours. I wanted to try and do more.
I was recently totally in awe of the efforts made by Hazel Allen at Bournemouth hospital who has helped raise and implement the £70,000 cost of a mobile fibroscan device, which now enables them to travel all over Dorset offering Liver fibroscans: bhcharity.org/projects/live...
I wanted to emulate this success in my own local area. I wanted this machine to be able to reach out to the whole community. Because it's mobile, it can be used in prisons, it would also be invaluable within the local Punjabi community (they have a problem with alcohol which is often hidden and never talked about).
My local hospital have turned this idea down. They are instead going to be rolling out a doctor/GP led ELF testing program, as they see this as being the way forward. I am totally gutted. There are an increasing amount of people out there who have little or no faith in their GP's as it is. Most GP's don't even know this test is available, and even if the results are such, a fibroscan at the hospital will still be required.
I am just a small voice, but feel I can't stand up or contest a senior doctors opinion and must respect their decision, even though I feel it's totally misplaced.
I feel this is such a missed opportunity for the people of my city. All I can do is sit back and watch the high mortality of liver disease to continue to climb.
To start with can I just say I havn't got the engery for a long winded debate and this is my opinion of dealing with the NHS over the last four years, ie chasing up blood results, scan results appointments been put back.etc
I don't really think the NHS could deal with a influx of people seeking medical help after having a fibroscan.
Hopefully in the future this won't always be the case.
I'm glad you written this .I agree with you fully .more needs to be done Richard ,making everyone aware of what help is out there and getting it.NHS MAYBE struggling and gps often are useless ( sorry thats my opinion) However many people's lives could be saved this way and I'm all for awareness and getting these issues with cancer or liver diagnosed .Good luck mate. We all are going to need it xx good for you 😁😘❤
With regard to saying GP's are useless, I have to say I totally disagree. I have used two different practices where I live and have been very fortunate that the GP's have all, with one exception, been totally excellent. I have encountered problems, not getting phone call appointments when I asked for them, but.... I wrote a letter of complaint to my GP, detailing the dates when I had asked for appointments over the phone and why and the fact that I was rarely called. He checked into my dates and found that I was correct and they have now changed the system. I'm not suggesting at all, it was as a consequence of my letter, but at least it was taken seriously and the matter was looked into.
I realise I have been very lucky with my GP, but I have to say it has not all been plain sailing. I realise others have negative experiences, but I genuinely think that most GP's are really and truly trying their best. With falling numbers of GP's and not enough being recruited I feel they are fighting a losing battle.
Anyway, that's how I feel about it and I shall now take cover in case there are people who take issue with what I have said
I'm pleased you have a good gp experience.As you say yourself we are all in different situations .my last 3 GPS have been horrendous.Though I've also had two fabulous ones in earlier years for several yrs.Maybe one day I shall find one as good as yours.i have no issue lol with people's opinions.we all have our own personal opinion .I can definately take that on board.Im very happy for you .😁
Sorry to hear that you are having issues with your GPs. Hopefully you will find someone soon who was much like your old ones. There was an interesting article concerning GPs and how once upon a time, they would see generations of families and thus recognise problems in their patients without the patient actually saying what was really bothering them. Like everything else though, this picture has mostly disappeared for a variety of reasons, which is a shame since not only was it beneficial for the patient, but much easier for the GP too who actually knew their patients. I wish you all the very best for your future health and glad that we can listen to others' opinions wothout taking it personally
Thank you. I totally agree with you about the GPS used to know an recognise much more in families.i too hope your future health is on the up an up too.much respect to you x
Don't agree, I have cirrhosis 10 yrs now only once did I ask to be refferd to QE hospital liver unit, I now have a new dr since moved home and he has been very thorough..plus QEHB @Richard 64 has the right approach, a fibroscan does no more than a LFT blood test,
I'm curious Richard as to why you think the implementation of a mobile fibroscan would be so useful? I have AIH, so just a tiny branch of those affected by Liver disease I know, but the message that came from the last AIH meeting (held in June this year) was that at the moment they are still trying to find a role for the fibroscan test. The people speaking at the meeting are the leading consultants in AIH in the UK and are very much engaged in the progression of treatment for patients
Not only are they trying to find a role for the fibroscan testing, but they went on to say that too much emphasis should not be placed on the fibroscan results for several reasons.
Reasons given were, confusing numbers; it measures stiffness which could arise from a variety of reasons, including eating; it can't distinguish between inflammation and scarring.
Maybe this is the reason why you're meeting with resistance, rather than a lack of knowledge or interest. Certainly in the AIH community, the message is that the fibroscan testing is not something that should have a lot of reliance placed on it. Perhaps this is the view held for other causes of liver disease?
I agree. Fibroscan scores are most useful when considered alongside other types of results. Fibroscans can be less helpful when liver inflammation can influence scores but this is not seen as significant. They of course remain very important within this context and have made it so much easier to raise concerns about the state of someone's liver... but so many people define their diagnosis on the fibroscan F scale (1-4) confusing this with cirrhosis stages which better take into account big symptoms and structural changes. The ELF test has much to recommend it too - as does Richard's passion for raising awareness. I simply believe it's worth further clarity and greater consistency in diagnosis and critically, prognosis. BTW I'm also a fan of the overstretched GP practice we enjoy here but naturally struggle with too.
Thank you so much for your input on this subject, it's very much appreciated. There are local areas of concern in the city where I live. There is a rising problem with alcohol abuse amongst the Punjabi community. Here because of the shame factor, this problem is never spoken of outside of the community, not even to a doctor. Here a mobile scanner could be invaluable as it would be open to anyone and everyone. It could be handled in such away as not to not mention alcohol, but just checking for liver disease. Once their in the system, they can then receive all the medical services available. I really believe that early intervention is the key to dealing with this silent killer.
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Thank you for your reply. Firstly may I say how sorry I am to hear that you have this condition. The Fibroscan is a quick and simple test to measure the thickness of the liver. It is a noninvasive early warning of liver damage. As you'll be aware, some people can have even cirrhosis and not be aware they have a serious condition. In my opinion, early identification can be not only beneficial for the patient, but prove cost effective to the NHS if spotted earlier enough.
A person who has a alcohol or drug-related liver condition may often be in denial of their problem, but by just having a quick scan (after all, they have nothing to lose) any problems can be identified earlier and further treatment and investigation ordered. This is one of the things I like about the BLT's "Love your Liver" campaign. These roadshows are doing two main things, firstly they are raise awareness of Liver disease, and secondly, during our 2017 roadshow we screened 872 people, scanned 774 and referred 134 (17%) to their GP for a follow up because they were showing signs of liver damage. While 134 may not seem a lot, that is 134 people who now know that they have a problem. The Bournemouth Hospital mobile fibroscan has proved to be a much valued item, and is used to cover all over Dorset.
Chronic liver disease is Britain’s fifth biggest cause of premature death behind cancer, heart disease, stroke and lung disease. Liver disease is the only one of these major causes of death that is growing year on year. I firmly believe that this Mobile liver Fibroscan device should be up there along with breast screening, bowl cancer screening, Cervical screening etc. Yet when it comes to the liver, we do nothing in the form of prevention.
Maybe your right, about not holding much credence in this mobile scanner. But surly doing something is always better than doing nothing.
I agree that awareness needs to be raised and I guess there is a variety of ways of doing this. However, the fibroscan can give people a score that might suggest they have a problem when in actual fact the score was raised that day due to what they had eaten or an infection. This could alarm people unnecessarily, since in actual fact they don't have an issue. Equally well, I have had a fibroscan done and the result was much lower than my consultant expected. Also, the scale can only be interpreted in the context of knowing what the underlying issue is since each cause of liver disease has its own scale. I agree with chrisw, the results have to be taken in context.
I am all for raising awareness, but am not sure that this is the answer. I don't actually know what the answer is either. When the issue of making it compulsory to donate your organs upon death, was raised in England, many people reacted badly to this and thought it was one more way that the "state" was taking control of their lives. I read many people saying that they would remove themselves from the list (that they have opted into) if it was made compulsory.
I am also aware that the biggest objections to donating organs comes from the Asian community. This objection comes when the person has already opted in, but the family won't give consent after death. Sometimes it is not just knowledge that people need to have, but a difference in approach brought from their culture. How do we acheive this? Having taught many Asian children in my time, I am aware of the many barriers that they face. I could go on, but it would take too long and I might put things in such a way that I upset people unnecessarily since it may come across one way, when my intention is otherwise.
If I have concerns, then perhaps the GPs that you contacted have concerns also. It might be worth talking to their Patient Participation groups and try to gauge what the general feeling of the patients who attend that surgery feel about it all. The PP group could get feedback from the patients and then this could be discussed with the GP who sits on the group committee. This may gain you a more sympathetic ear and start the ball rolling. Just a suggestion
I am not saying do nothing, but merely trying to raise other issues. Good luck with your endeavours
Well said.. I had my first fibroscan in Feb last year, hepatologist only did it as it was my first appt to confirm I had cirrhosis, upon telling me my read was 27kpa f4 end stage fibrosis I immediately panicked, my sister was with me at the time so naturally I thought i had end stage cirrhosis, where now I know is incorrect.. as for other ethnic communities, they are no different to anyone else, infact they are the majority I see in a GP waiting room and my local hospital 🤔🤔...
Sorry to hear you had a scare and thankfully that has been cleared up. Hope you are doing well now. The phrase "end stage liver disease/ cirrhosis/fibrosis" is truly frightening and as it turns out misleading. Our consultants are aware of this in AIH and are having a think about alternatives. All the best to you Millie09
Thank you MC1189, I wasn't expecting it at the time so obviously I went round thinking my dsys were numbered..but no, my liver is ticking over nicely 🙏🙏.so far, just have my regular 6 monthly check ups .yes I totally agree there , hope all is good with you tc .😊
Having a good year so far! Last year was more challenging. Some blips in the road, but with 3 monthly check-ups , so far so good. All the best and thanks for your responses
Fibroscan wasn't available in the USA when I first got sick, so I started looking into algorithmic patterns in commonly available blood labs. The combination of GGT (into triple digits) where a substantial De Ritis (AST/ALT) inversion also is seen is a remarkable red flag for alcoholic disease in active drinkers.
Ferritin also spikes high in active drinkers early on in nearly every case of ALD I have seen. These are all dirt cheap labs, but it is rare to see all of these included in routine labs in drinking populations.
We also have Fibrosure (aka Fibrotest) algorithms in the USA, which are remarkably accurate. I can't help but think if drinking populations (and their doctors!) were made more aware of these initial red flags for ALD, they might be included in routine labs in drinking populations more often.
Fibroscan machines are expensive, and thus few and far between, but most everyone has access to blood labs. Until we have easy access to fibroscan, education about the red flags of ALD in easily available bloods may provide a bridge towards better diagnostics.
Totally agree with that -my first indication of liver issues was a blood test in Italy where ggt was included.
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This is very interesting. I didn't comment on the alcoholism aspect, since I am not familiar with this aspect of hepatitis, so it is interesting to note that the labs show very specific results- not unsurprisingly. Since many people are not totally truthful about how much they drink, it can be difficult for doctors to ascertain (I am guessing here) which patients are drinking what they say and which patients truly have a problem. I guess this might be why these bloods are not done as a matter of routine. Also, I know through someone I know, that not evryone wants to know if they have a drinking related issue, even when it seems highly likely. Anyway, I'm rambling a bit here, so I'll just say I was interested to read the above about bloods
I got the love your liver posters and leaflets and took them to my GPS and they said they would ask the manager and they never went up. I’m so frustrated.
I agree with you Richard but fibroscan can give false readings if the person is an active drinker but it can save some people lives. In America we now have ASH fibro.which will pick up on current drinkers. Also, in the USA, bloods are very good because we have ALT/AST and I have noticed in other places in the country, only ALT is measured. Most doctors, also look at the ferritin levels, and in drinkers, they are almost triple from being normal. Ferritin cannot leave the body so it sits there in the liver and other organs. Some doctors will run a ferritin test and will tell you to give blood to get the levels down or they will draw blood from you weekly or monthly to get your ferritin down in a healthy range. I hear people say all the time they stopped drinking and their ferritin went down, that's not exactly true, you stop drinking and have less inflammation in your organs but you have to remove excess ferritin. There are some meds. that can help with some of the iron but most will sit in the body until it is removed. I have read that LFT is no good and people have advanced liver disease, just look at their labs, you will see a decline in platelets and GGT is high even later in their sobriety.Richard, it would be good if they could do both, bloods and a quick scan, I wish they would do it in the USA, it will also save a lot of lives. They need people like you, I know in my country, I am trying to promote testing with a mobile in poor areas where people don't see a doctor on a regular.
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In the UK if you have LFT's done, they include AST and ALT, so it curious to hear you saying LFT is no good. Obviously the way bloods are examined in the USA is not quite the same as in the UK. There seems to be some variability on what is looked at. I wonder there is no uniformity on this matter?
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That's not what I said, I said bloods are very good, but I know some countries only examine ALT, and some countries don't examine GGT.
I would rather rely upon the results from a LFT and Ultrasound as opposed to a Fibroscan. My last Fibroscan result was 23.7 Kpa (F4) yet ultrasound showed only mild diffused fatty liver, no portal hypertension, no fluid, no inflammation nor any signs of nodules (however it was quite bright = fat). My last blood work was also all in normal range. I have had readings far higher than 30 Kpa in the past. I had my results investigated and was informed that the results from Fibroscan were false negatives and taking readings from my overlaying ribs. From my findings a Fibroscan is only as good as it’s opporator in taking readings from the right areas and using the correct probe head. Many specialists will agree with this.
Mark, thanks for your response, and I totally agree with you about the reads obtained from a Fibroscan. All I'm trying to do is to try and address the bigger picture. As you'll appreciate, liver disease is called the silent killer. Because people my have it, and not know about it. Where I live, has very high levels of premature mortality from liver disease. Yet no-one wants to do anything positive about this. I really wanted to follow Bournemouth's lead in obtaining a mobile fibroscan, and go out there into the community and run tests. The Fibroscan hopefully will at least identify a potential problem at an early stage. Just by measuring the stiffness of the liver. It will at least prompt for further investigation.
It would appear that those within my local hospital hepatology and gastroenterology departments don't think this a good idea, nor do they wish to engage in any fund raising activities. In my opinion this Mobile Fibroscan device should be up there along with Breast screening, Bowl cancer screening, Cervical screening etc. Yet when it comes to the liver, we do nothing in the form of prevention, and what is now even more alarming, is that certain Healthcare trusts just aren't interested.
I think somehow my original post has become lost. I merely wanted to highlight the need for us to have some form of advanced early warning of liver disease. It goes without saying, that by catching and identifying liver disease at an early stage, can be cost effective to the NHS, and preventing greater medical issues further along the way.
I’m in full support of what you aim to achieve and awareness is key. Fortunately ‘drinking to oblivion’ is going out of trend especially amongst the younger millennials mainly due to social media and the desire to appear fit and healthy on Instagram etc. I’m 42 and know my generation were by far the worst offenders of binge drinking, pre-loading etc. Ultimately as long as it’s short, unless a person knows they have something to worry about, they will do nothing to investigate. I’d suggest joining groups on Facebook such as Dry January, Club Soba Together, The Alcohol Experiment etc and post there to gain traction. There are thousands of member but only a few hundred whom are active... it’s those silent thousands whom you can easily reach out to whom know they have a problem but don’t know how to start to deal with it. Then maybe suggest setting up a ‘go fund me’ account and ask the moderators of these FB Admin pages if they would post a sticky to your Go Fund Me page. Just an idea... I’m sure it wouldn’t take long to achieve funds to finance a couple of Fibroscan units and mobile vans or trailers. Next contact local MP’s and, we’ll start the snowball rolling 👍
Hello Mark, I'm sorry for not getting back to you sooner. I liked some of your suggestions, and I shall be looking into these, thanks for the heads up. Getting the message out there in the public domain is my main objective.
Once again, many thanks
Hi Richard,
Thank you for raising this discussion.
If you have a FibroScan at one of our Love your Liver events and there is an indication of possible liver stiffness, then following the scan you would have a discussion with a health professional present on the day, given a letter of explanation and be recommended to visit your GP. Emphasis is then on the individual to discuss the result with their own doctors, who can then refer on for further investigation and tests.
Our Love Your Liver events are purely to raise awareness of liver disease and should not be used to diagnose a liver condition.
It is also important to state that a FibroScan should not be the only resource for making a diagnosis and your own doctors are best placed to order the next tests and referrals on to liver specialists.
Warm wishes
Trust1
Hi
Hope you are all feeling s little better.
Tslki g of drs, I thankfully had an appointment with a very Dr 2.5 years ago. She straight away took my pain seriously and went through my meds which no other Dr had done!! To cut a long story short I was diagnosed with Nash I'm November 2016 after a biopsy. It was caused by the meds my drs have given me these last few years!! She has been wonderful and also referred me straight away . There is another good Dr who has joined the surgery. Love and hugs Lynne xxxc
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