The lack of action to tackle liver dis... - British Liver Trust

British Liver Trust

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The lack of action to tackle liver disease in the UK is "scandalous" according to a group of MPs.-just posted on BBC

briccolone profile image
46 Replies

The lack of action to tackle liver disease in the UK is "scandalous" according to a group of MPs.

In a report, the all-party Parliamentary Hepatology Group says deaths from liver disease in England have risen 40% between 2001-2012.

It argues continuing complacency is leading to a "shameful waste of lives".

Liver disease accounts for the fifth highest number of deaths in the UK, but is the only one of the major killers that does not have a national strategy.

David Amess MP, who co-chairs the Parliamentary Hepatology Group said if the rise in liver disease continues to be ignored then "before long every one of us will know somebody with cirrhosis, end stage liver disease or liver cancer."

The main causes of liver disease - alcohol misuse, obesity and viral hepatitis - are all preventable.

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briccolone profile image
briccolone
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46 Replies

In many respects it is a lifestyle choice.

All choices come with consequences, good or bad.

jenniwren profile image
jenniwren in reply to

Many liver diseases are not caused by lifestyle choices- please don't use such sweeping generalisations.

Sue50 profile image
Sue50 in reply tojenniwren

I really do think you need to look at the figures jenni, of course non lifestyle illness cause liver disease too, diabetes is one but that can be life style too. There a literally 100's of liver disease. Everything we put into our body has to be filtered through the liver, albeit long term medication too. X

jenniwren profile image
jenniwren in reply toSue50

Hi Sue,

I feel that your response was unnecessarily aggressive. I was merely making a polite request for acknowlwdgement that there are many liver diseases not caused by lifestyle choices. This is not incorrect information. I am well aware that there are a huge number of factors that influence liver disease. I also find that there is a severe lack of information surrounding ALL liver disease but that the information that is out there and the areas that the government tends to focus on are aimed at lifestyle related liver disease which only puts more of a stigma on all types.

I agree wholeheartedly with PCBnPBC that we should be here as one to improve all areas of information that ia available.

Sue50 profile image
Sue50 in reply tojenniwren

Sincere apologies Jeni, I did not intend to come across aggressive. I suppose that is the the thing when corresponding via e-mails. I was just merely making an observation, during conversation, so once again apologies and hope we can continue to Join in putting our opinion, thoughts and in some cases experience too.

Good day to you x

jenniwren profile image
jenniwren in reply toSue50

Thanks Sue, the internet can be a difficult place to communicate! Hope you have a lovely evening :-) x

Sue50 profile image
Sue50 in reply tojenniwren

Glad we sorted that out Jenni ☺️X

Sue50 profile image
Sue50 in reply tojenniwren

Hey jenni was I that bad purple all the 6's tore into big time

jenniwren profile image
jenniwren in reply toSue50

Absolutely not! I'm confused about what purple666666 is contributing to this thread...

Sue50 profile image
Sue50 in reply toSue50

Thanks. I was beginning to think I was doing wrong x

purple666666 profile image
purple666666 in reply toSue50

what do you think of indivduals who persue dangerous sports, or young people who go into the armed forces.when they are hurt do you say '' well they choose that life style'' it appears that you have never had to deal with someone you love being very ill. if you have come onto this site to express negative opinions i suggest you go elsewhere, you seem like a troubled person.

Sue50 profile image
Sue50 in reply topurple666666

First can I say you do not know anything about me, my opinions are merely that, and I am in no shape or form negative. And as for "well they chose that life style" you really don't know me, I will tell you that I drank all my adult life apart from being pregnant that is. I have chronic liver disease almost lost my battle 2 years ago, and have remained abstinent. It's also obvious that you are not a clairvoyant as I have plenty of friends a loving husband and 3 beautiful daughters. So I suggest before you carry on bad mouthing me please read what I say carefully purple66666 oh and I am not going anywhere

Sue50 profile image
Sue50 in reply topurple666666

My answer to your Question above, is mind your own business it has nothing to do with this site

in reply topurple666666

Dear Purple

I suspect you believe many of us are not in sympathy with your opinions, but in life we have to take chances. we also make choices, unfortunately some good some bad ones. People join the forces not to get killed or injured. but know that they might. People do dangerous sports not for the intention of getting injured, but realise they might. People do these things because they are human beings.

If we were all on this site with negative opinions or insults there would be no point to it or to reasonable debate.

I assure you I do know illness, I worked amongst it for many years as a registered nurse. I considered myself a good and sympathertic nurse who cared deeply for my patients and people I dealt with, and still do.

purple666666 profile image
purple666666 in reply to

why are you even on this site! remember those in ivory towers are as vulnerable to any illness. i feel sorry for you, your friends and family, if you have .

in reply topurple666666

You do seem to wish to comment and insult, and jump to conclusions without knowing any details of them or me. Please do feel free, I am not offended. However, if you have something to say, indeed do say it, that is what this site is for.

Please don't finish your sentence with ''If you have.'' If I have what?

If you wish to know why I am on this site just ask.

As for living in Ivory towers you obviously know the meaning of it. I have never come across a person living in one. Unfortunately, I am unable to comment on that matter.

It appears you are unable to accept amiable discussion on a topic with out getting heated.

If comments on these sites were not in some way controversial, there would be no point in discussing them, That is how one gets debate going, and how eventually one gets attention drawn to them by the people that matter. If you are only in sympathy with the good comments

I personally would be totally Hypocritical If I said what I dont mean.

However, I do still stick with my comments.

I do not think they were biased to people with Liver disease (after all, I do have liver disease myself, That is why I am here on this site)

I suggest if you are so mortally offended by me or my comments, then please do feel free to report this to the community regulator.

Yvi1960 profile image
Yvi1960

I agree it may be because many presume liver disease has been caused through lifestyle choices that it continues to be stigmatised and therefore attract little media attention and funding unless it is to sensationalise the disease caused be alcohol.

I did say in ''Many Respects'' not ''All Respects''. please read carefully.

If you look at statistics, Liver disease is becoming more common because of the increasing problems with alcohol dependence and Obesity. weakening the liver by such acts only leads to other problems. If we think of the liver as a filter and cleaner for everything taken into the body. We must realise it gets a lot of hammering. Obviously, some diseases are of unknown cause, or can be led back to certain infections..

but many liver complaints are preventable.

pwbr profile image
pwbr in reply to

If, Owdsod, you had said in many "cases" that would have been true but you said "respects" which carries a different connotation.

Liver disease is terrible however you become afflicted by it but you must know that some causes have nothing whatsoever to do with lifestyle choices and if you are one of the poor unfortunates in that category it must be galling when generalisations like this are used

It is all about education and those who have read or posted on this forum for any length of time should know more than the average man or woman in the street about liver disease

Pwbr

Sue50 profile image
Sue50

Lack of education in schools still so poor,I have said this for a very long time. People should be made aware that your liver is so complex and vital to every day living, after all look at like you have just bought a brand new car with a Diesel engine, would you go and fill it up with petrol? The answer as well we know is no. So why fill our body with contamination that is going to destroy you liver and life. End stage liver disease is one of the worst deaths I have ever seen, and should be made more publicly TV/ news, adverts etc. x

Bolly profile image
Bolly in reply toSue50

At the risk of being shot down I don't feel strongly that education in schools would make a huge difference. I have liver disease (caused by a virus) and my university age son is therefore well educated about liver disease and the consequences of liver damage, but it has made little or no difference to his alcohol consumption at uni!! (He only drank rarely before, and usually with a meal). I think many young of his age feel partly that their health is 'invincible' and partly subject to peer pressure when it comes to drinking. I think a change in the availability of alcohol, and a change in the cost of alcohol would make a difference. Many young students now 'pre-drink' cheap supermarket alcohol in their halls before going out to continue drinking in bars and clubs, as they can get drunk faster and cheaper that way! If alcohol wasn't so cheaply available in supermarkets they might reduce the drinking to excess to cheap student nights in bars and clubs which are more often restricted to one or two days a week.

Sue50 profile image
Sue50 in reply toBolly

I wouldn't shoot you down ha, it's nice to see what other opinions are out there. Sorry to hear of liver illness. So true teenagers think they can last forever, I did too. However I feel it doesn't matter on what the charge of alcohol is, they will still do it, and drinking before going out is very common too. Personally I don't feel it's because of cost, I think it has become apart of their culture, after all look how much cigarettes have increased over the years, yet I still youngsters smoking and more of them are girls too. Cheap alcohol should not be sold full stop, my opinion anyway.

PCBnPBC profile image
PCBnPBC

""In many respects"" is OK, (I am here through PBC - and it is irksome that many <not all> assume self inflicted harm)

So self inflicted, - it would seem some can drink (lets take that self induced route of a number) say 15 pints on a regular basis and get away with it for longer, when some drink more moderately and get liver failure. Better and realistic education, and more screening would mop up a great deal, so self inflicted or not the issue remains, testing is much less expensive than any other route - lets make a noise here as one group, and not get politically correct about semantics ?

Ph1ldad profile image
Ph1ldad

My lifestyle choice was to give blood in a third world country where, unbeknown to me, they reused the equipment. What a choice that was. I think that, given as much information as for the dangers of smoking most people wouldn't make a conscious, informed choice to risk liver disease. The messages we get from the Government is that an amount of dangerous substance is ok; pah!

harrogatesanctuary profile image
harrogatesanctuary

My area of expertise is alcohol misuse, so forgive me for being specific. In an ideal world I am sure everyone would agree prevention is always the best course of action. However, because of the stigma and taboo, few of my clients will confess to drinking too much to their GPs, fearful that results of LFTs and their honesty will be recorded and shared. So imo, there has to be a change in appropriate care that does not involve judgement and the shame and consequences that come from that. My clients are not drinking alcoholically, but they do drink habitually, professional women, many working in the healthcare sector. Without this change, the tragic results that we are seeing will keep escalating, the emotional and health costs are vast, the financial cost just as epic. This is such an ignored vital organ, the factory of our bodies, and it is scandalous that most people are so unaware of it's importance.

blaenguy profile image
blaenguy

I am a health care professional and had worked in high risk areas for many years, I contracted hep B twice (once subclinical) I now have cirrhosis which has been attributed to heavy alcohol use - however, I was always careful not to exceed the recommended daily units, which of course no health professional of any stripe believes.

So I put my condition down to the exposure to Hep B. In as much as to take up a caring profession that is a lifestyle choice.

Sue50 profile image
Sue50 in reply toblaenguy

It's very true what they say some people drink excessively and have no liver problems. I knew a woman who was in her Kate 40's started to drink and died 2 years later of liver problems. You should have been told if you have ALD or NALD, I WOULD WANT TO KNOW X

nbee profile image
nbee

When people talk about lifestyle choices and especially alcohol I think there is a lot of generalisation. They don't ask why they drink, lots have problems or mental health issues and can't cope and use alcohol to self medicate not just because they want a jolly up. People shouldn't judge others when they don't know the reasons behind it.

Sue50 profile image
Sue50 in reply tonbee

Do you drink alcohol née x

nbee profile image
nbee in reply toSue50

Not anymore, got help for my problem and the issues I had which caused me to drink. A few months after I stopped I got rushed into hospital with an upper gastric bleed and was diagnosed with cirrhosis. Things are a lot better and under control now so count myself lucky. Been sober for over a year now and going to stay that way :-)

Sue50 profile image
Sue50 in reply tonbee

Well done if you look above I have just explained myself to purple 666666, who seems to have taken in instant dislike to me, but if I can survive chronic liver disease then am sure I can get over that. I too was taken into hospital I was convinced I was fine and was so yellow my consultant said he hadn't seen anyone with that stage survive, it will be 2 years beg April for me. I still am not fully recovered I get very tired and don't sleep much I also have anxiety and panic attacks which happen very suddenly. I am new on here and seem to have got on a bad start though

nbee profile image
nbee in reply toSue50

lol don't worry about it everyones entitled to their own opinion, not that I thought you said anything offensive. Suppose everyones case is different so feelings can run a bit high. Glad to hear your getting better, hopefully more so. It was panic attacks that started me off, alcohol seemed the perfect cure at the time how little i knew. You kid yourself you'll get it sorted before it becomes a problem but before you know it your stuck in a vicious circle. So glad im out of it and things do get better, just got to stick with it as im sure you know. You can always give me a shout if you need to talk, thats what these groups are for.

Sue50 profile image
Sue50 in reply tonbee

Thanks, the same goes here too, I do believe once it's got hold of you it does become an illness, Iam watching my friend killing herself, in and out of hospital it's unreal the amount of times we've been told she isn't going to pull through, anyway she has been in hospital yet again for 7 weeks this time and is die out, so fingers crossed again x

nbee profile image
nbee in reply toSue50

Yeah i'm sorry to hear that, some people can't seem to be able to kick it and its sad to watch. Suppose all you can do is hope that this time is different.

PSCMartine profile image
PSCMartine

I have an autoimmune liver disease not caused through 'lifestyle choice' - Primary Sclerosing Cholangitis, and it is frustrating when society automatically attributes my liver disease to alcohol.

The fact is though (whether we like it or not) that most chronic liver disease has a preventable cause. That doesn't mean the people are aware at the time that their lifestyle is affecting their liver. Imagine finding out you have a liver disease caused by something you did 20 years ago, or from having a poor diet because you don't have access to information about healthy diet (or the money to have a healthy diet), or from having a poor diet just because you thought a low fat diet was healthy when in fact sugar is the problem?

The government should listen to the BLT and the All Party report. The government could and should do so much more to inform and educate people about keeping their liver healthy, they could introduce vaccines, and improve liver services so that people can be screened earlier etc. People getting preventable liver disease affects me: my liver disease has no known cause and no known cure; the only hope someone with PSC has when they get end stage liver failure is a liver transplant. There are not enough organs to go round for people needing liver transplant and many die on the waiting list.

I want less people to have liver disease (and ultimately, less people needing transplants). I want the government to help prevent 'preventable' liver disease, so that NHS resources can be used to treat patients like me and others, however their liver disease has been acquired. To me, anything to prevent 'preventable' liver diseases is good for us all. Like PCBnPBC said above, we should shout as one group.

briccolone profile image
briccolone in reply toPSCMartine

absolutely-education is the key

I'm waiting to be tested for auto-immune PBC, I too used to think all liver disease was caused by bad choices and/or alcohol. I now know better. I'm Tea total by the way and have been for about 40 years. I also have RA, sjogren's Syndrome, Osteopenia, Bronchiectasis with pseudomonas colonies, and am being treated for Breast Cancer. So to be told I might have PBC is a worry I can do without.

gamesmaker profile image
gamesmaker

It makes me so cross when people generalise about lifestyle and liver disease. There are lots of us with liver disease who have led lives without risk - I am tee-total, only minimally overweight, exercise well (swim half a mile a week and several walks a week), have never used drugs (except for prescribed drugs / medications from my GP) , never participated in other questionable activities - but now I have NASH cirrhosis, as does my sister. We have been told it is inherited. People deserve health care whatever the cause of their illness (I have worked in the NHS for all my working life).... but please do not jump to incorrect conclusions about lifestyle.

AyrshireK profile image
AyrshireK in reply togamesmaker

Completely agree with you gamesmaker, my 52 year old hubby who has been tea-total for life, never touched drugs and very rarely even prescribed ones, carries no additional weight 8 - 8 1/2 stone on a 5 ft 5 frame, very fit and active serious long distance walker doing up to around 2500 hillwalking miles per year as well as working full time in heavy engineering and yet completely out of the blue he vomits blood and we discover he has cirrhosis with portal hypertension and varices all with an auto-immune cause.

Even 3 medical professionals have rather put there foot in it as regards hubby's illness. A doctor visiting the high care unit after his initial bleed stated "Let that be a lesson to you, you need to moderate your lifestyle", a GP has asked "and are you still drinking?" and a nurse following an endoscopy has asked "can you manage to stay off the alcohol for 24 hours?". What hope do we have of removing the stigma if even medical professionals say that to patients whose illness hasn't been caused by a 'lifestyle choice'?

More information needs to be put out there about what to look out for in early stages, what things might be indicators that something is going wrong. My hubby only found out after the bleed but looking back he had what might have been indicatory signals before that and like they were saying on the news last night there is no screening programme for the liver and as the 5th biggest killing health condition more needs to be done to educate and test for signs of liver disease.

My hubby is now thankfully under the care of the liver transplant team in Edinburgh but isn't listed for a transplant yet but we'd dearly love him to have his life back to something like it was before, at the moment he feels like he's stagnating with no hope of improvement and only anticipating a worsening.

I urge everyone with any niggle now don't ignore it, get it checked out, who'd have thought the odd nose bleed, issues in the bedroom department, tiredness, funny shaped fingers and other odd symptoms were all signs of a serious condition developing?

Strength to everyone suffering or caring for a loved one, keep supporting each other and keep getting the word out to all - get the message out that you don't have to have done anything harmful to your own body, your liver can still become diseased/damaged.

Katie

AyrshireK profile image
AyrshireK

To be fair to briccolone, the post above is not her own words she has just copied what was reported on yesterday's BBC news and what was widely shown on the tv news. Sadly although the news peice had the aim of highlighting liver disease and the inaction on the part of the health system it also rather repeated the publicly held misconception about liver disease and its causes and chose only to concentrate on conditions which might be perceived to be 'self-inflicted' without going into the plethora which are not such as the auto-immune conditions,etc. etc. etc. Here is a link to the original BBC news piece. bbc.co.uk/news/health-26728867

Katie :)

Tatjana profile image
Tatjana

briccolone I suggest that you check your facts before you make such statements. I thought I knew for a fact that at least one of the 'main causes of liver disease' was NOT preventable before 1991 but, maybe you know different and if so, please enlighten me and tell me how I could have avoided liver disease. Thank you. By the way, just to let you know, I don't smoke, I don't drink, I have never done drugs but I have had a baby and after the baby, lost 14 pints which was replaced with HCV bearing blood and last year all that changed and culimated in me getting liver C.

briccolone profile image
briccolone in reply toTatjana

hi as Ayshire's kindly pointed out this was a post by the BBC that I posted as it may be of interest to this forum which it clearly is. There are many people on this forum who have liver issues from various caused-I'm nit taking a view on the matter-just glad it may force the health authorities to be more pro-active and maybe be the general public

Purpletop profile image
Purpletop

Going back to the BBC report and the 'preventable' point - maybe a program of regular screening of liver function blood tests or ultrasound, for example, every year or so (depending on how quickly liver disease can progress), maybe that would at least bring to the attention of the patient and his/her doctor that something is amiss. Therefore triggering further investigations, early diagnosis, earlier treatment, etc.

briccolone profile image
briccolone in reply toPurpletop

totally agree

Tatjana profile image
Tatjana

briccolone as I was responding to you I was looking at a letter which had just arrived and was addressed to my husband from the Department of Health, sort of apologising for a sweeping statement made about a couple of months ago in the House, by the Minister of Health who is a doctor, that all HCV is caused by -ex and is incurable. I apologise that I read it that you were saying this and not the BBC.

H1ghtower profile image
H1ghtower

That was quick! Halellujah my faith in mps is restored

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