'Eastenders' set to run a Cirrhosis st... - British Liver Trust

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'Eastenders' set to run a Cirrhosis story line

AyrshireK profile image
24 Replies

I've just been reading on the Radio Times website that they are due to run a story line whereby character Phil Mitchell gets diagnosed with Cirrhosis. The character has had a long storyline of drug and alcohol abuse and now they are now having him diagnosed with cirrhosis. radiotimes.com/news/2015-12...

Seemingly the producers/writers have been working closely with Andrew from the British Liver Trust for the story and whilst I applaud getting more knowledge out there it will AGAIN - in a high profile way - propagate the liver disease = alcohol message/stigma which many of us battle against every day.

I hope they don't go all the way to him getting a transplant unless they really put him through the mill and and realistically show how poorly someone needs to be, what the criteria is and the assessment procedure and what it is like to wait. An unrealistic portrayal of alcohol - cirrhosis - transplant really would set back the liver transplant cause because millions still watch and wholeheartedly believe these soaps. I've heard on various debates people saying they wouldn't donate their liver after death because it is only going to an alkie (the George Best effect!).

It really annoys me, this constant publicity of cirrhosis = alcohol especially when so many of us or our loved ones are affected by liver disease having never touched alcohol or drugs or engaged in 'risky' lifestyle behaviours known widely to put one at risk. Those who have found themselves battling an illness they obtained either by accident or genetics or just because their body suddenly decided to attack itself. Grrrrr, it really does annoy me and it isn't just ordinary members of the public who see these programmes, see the high profile campaigns and such and then jump to the very wrong conclusion.

My hubby is lifelong tee total and his most risky behaviour was climbing mountains alone and walking thousands of miles a year and yet he's had doctors come up to him in a high dependency unit when he was getting blood transfusions and drips following a massive internal bleed and say "Let this be a warning to you, you need to moderate your lifestyle", a GP's who has said "Are you still off the drink?" and nurses post endoscopy asked "Can you manage to stay off alcohol for 24 hours after your sedation?".

Sorry for the rant it is just one thing which really gets on my goat. None of these shows ever show the young child who is living with liver disease or the non-alcoholic needing a transplant. 'Casualty' did it again last week with an alcoholic mum having burst varices. Whilst some claim they don't know the correlation between alcohol and liver disease it seems to be the only liver related message that ever gets widely promoted.

Going to sign off now, i've had a good rant.

Katie xxxxx :)

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AyrshireK profile image
AyrshireK
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24 Replies

Totally totally agree 😘

I was asked recently by our new GP 'is rob drinking again ?' Because his LFTs were all over the place 😫😫 NO he doesn't drink alcohol and hasn't since he was 23 he is now 49 - that's a fair amount of abstinence 😁😁 his HCV was put down to tattoo or piercing when he was in his 20s before they all became 'sterile' so to speak - I remember my first tattoo around 92/93 and bloke didn't have gloves and was having a fag whilst doing it 😂😂 have no idea if he changed needles or anything !!!!

I wonder if Phil will have HE or will they cut that out because it's probably to horrific for the Gen public to see - I might even watch it now to see how they do it - I didn't watch casualty but when nursing I remember a lady 34 with varices and it was horrendous 😓😓😓 she bled out and didn't make it - it's so weird really as when I was on one ward I always remember someone saying to me 'look up 'portal hypertension' it's unbelievable' - so I did - little did I know 10 years later it would become something I would really needed to know about !!!! perhaps there is such a thing as 'fate' xxxxxx

Bolly profile image
Bolly

I so sympathise with the frustration with the link between alcohol and cirrhosis especially as we bang on here a about the other 20+ causes of liver disease.

I wonder if this inclusion in a soap (which I don't watch) is connected to the NHS 5 year plan where they want us to focus on what they call "preventable" diseases that threaten to swamp NHS resources. In its plan the NHS says it "backs hard-hitting national action on obesity, smoking and alcohol...."

There have recently been Doctor in the House programmes looking at binge drinking (the conclusion of that being that the Royal Free were to recommend daily intakes were to be re-assessed) and a real life case where diabetic patients reversed their diabetes purely with lifestyle changes.

So although it's frustrating to feel "overlooked" again, perhaps it's not those of us with variants of autoimmune liver disease or paediatric cases who place the main burden on NHS resources.

Interestingly I was just saying to my hubby this weekend that in 30+ years of liver disease no medic at any of the 4 hospitals I have attended nor any of my 6 GPs nor any of the countless medical staff who have taken bloods or imaging or prepped me for examinations or patched me up after have EVER suggested I must have drunk alcohol to get where I am.

ballie52 profile image
ballie52 in reply toBolly

The stigma that goes with hep c is even worse..I found many people even in the medical field looking at you before they even read their notes and you get the impression your being judged. .I have never touched alcohol or drugs in my entire life..my hep c was caught from my husband many yrs ago due to vaccinations they gave to the population of Egypt and used contaminated needles. .

I think no matter what the cause everyone should be treated with respect regardless of how they became ill!...yes sadly liver disease does still carry a stigma!

MisterX profile image
MisterX

Oh excellent! So that will be all of 2016 leading up to an End-Stage Liver Failure Christmas Special next year presumably....

I've been saying for years that they've never truly managed to outdo the abject misery of the "Arthur's Christmas Breakdown" story after he stole the Christmas Club money but with this storyline I expect them to have a go....

It is a shame to reinforce the drinking/cirrhosis link in the public mind - but it is an absolutely huge number of cases so if it has any effect on behaviour it might be worth it....

..... but there should be easier and less cruel ways of educating people than making them watch Eastenders...

dckimberly profile image
dckimberly in reply toMisterX

falls on floor laughing..WELL.. it could be Antiques Roadshow tackling the subject?? lol

I don't like how they portray hep-c patients as IV drug users or alcoholics. I contracted it through blood transfusions and always lead a healthy life. Every time I am in emerg. The first thing they ask have you drank any alcohol or are you an IV drug user? It is so humiliating how they treat people like me. My liver specialist always tell me they are just ignorant interns but it maked me avoid going to the hospital when I need to go. Has Any one else who's like me experience this problem?!!!

dckimberly profile image
dckimberly

nods..I agree..if they are going to do it, lets hope they do it right.

They did a story line on Nashville and I thought it was a huge disappointment. But, maybe It was just too close for me..you know? ¯\_(ツ)_/¯

On Eastenders..will they send him to one of the only 2 hospitals in the UK to actually do the transplants (I believe its 2? I was at Addenbrookes)

Your also right about the soaps and about stigmas.Not all people with cirrhosis are drunks. period. but, many of them are. I don't know the statistics?

Another reason while its so important to get it right..especially if it involves alcoholism is that sooo many drunks don't take care of themselves to begin with..and if the show does not portray it right..some poor mother or partner might actually believe the soap, and not the doctors, and not know to pay attention to the real signs. Cirrhosis is often around for many years before it really does any damage, and the sicknesses associated with it are varied..and yes, they are debilitating..

thinking a good thought anyway..especially if they are working so closely with folks who know.

We could get lucky..meaning..maybe one of the producers has dealt with this, has a family member, etc..and really wants to see it done right and to help people. Alcoholism is a very serious issue in this country. in all countries. Ad so is Cirrhosis.

oxoxoxxo

cheering you on! :)

kimberly

AyrshireK profile image
AyrshireK in reply todckimberly

There are 7 liver transplant units in the UK - Addenbrook's (Cambridge), Royal Infirmary of Edinburgh, Freeman (Newcastle), King's College (London), Queen Elizabeth (Birmingham), Royal Free (London) & St. James's (Leeds).

Just for info.

Hope you are on the road to recovery Kimberly.

Katie xxx

AlexandriaUK profile image
AlexandriaUK

I know where you are coming from, I have raised gamma gt and have been told not to drink, er never drank more than a glass or two of wine and haven't touched even a sip of alchol in nearly a year and because I don't drink I now get strange looks even from my family, do they think I drank secretly? My consultant even had the nerve to say in a letter he believes me when I say I Don't drink, how rude and patronizing, I also hope they get it right and thatthey make it clear liver ddisease is not always about life style

I feel your pain sister

RodeoJoe profile image
RodeoJoe

Let's prepare for the worst. As far as I'm aware (as I have to watch it because of my other half) Phil has only been drinking again for a few weeks. He was abstinent for years. As liver disease was never mentioned before then how did he mange to get it in just a few weeks?

Just a load of nonsense and unfortunately not doing any of us any favours. Because you do not have to be a drunk to get Alcoholic Liver Disease, and there is a progression and you don't just wake up one day with it after a few weeks of having a bender.

Also yes, it's just going to cement the point of view that liver disease is always caused by alcohol. Like many of you have said, I was also constantly accused of heavy drinking. I remember when I was first diagnosed at 27 a nurse said you're a bit young aren't you? Making assumptions my disease was caused by alcohol. And that's from medical staff, what do they think the general public will take away from this?

Dear Katie and all

Please know that we always do our best to highlight all causes of liver disease but on this occasion it was Eastenders who contacted us as they were running with this storyline and consequently I wanted to get the most correct information to them. Unfortunately we do have a major issue with alcohol related liver disease in the UK which undoubtedly increases the stigma and misinformation about liver disease so any opportunity to at least try to get the message 'right' is very important. Although I'm not sure if it will ever be taken up I have suggested they have a storyline about a person with a genetic or autoimmune liver condition. We will keep trying and ensuring any opportunity to raise awareness of all causes is used as effectively as possible.

With regard to some clinicians and their lack of education, understanding, compassion etc we are currently working with the Royal College of GPs to try to improve things in primary care and I am keen to continue working with all the clinical training organisations inc: deaneries, medical schools, schools of nursing etc to provide as much education about all causes of liver disease and information about all of the liver conditions and the holistic problems they cause.

with best wishes to you and yours

Andrew

art4949 profile image
art4949 in reply to

Thanks for that Andrew. It is important that there is a balanced view regarding HCV...hopefully, the writers for Eastenders took on board all aspects regarding HCV that you have mentioned. There really is a huge lack of knowledge surrounding HCV even in the medical profession.

Yes, HCV has been more rapidly spread in the beginning through poor medical hygiene practices, drug users sharing needles and alcohol abuse. But HCV has been in the general population too long....anyone could have HCV today...that is the message I believe to be true.

Trying to curb alcohol abuse by showing the alcoholic yet one more result of their self-abuse will not stop them. But it might make a person who over indulges in alcohol think again about the consequences.

For those of us who have HCV the social stigma is part of living with the disease..and it is made even worse when those who are suppose to care for us cannot even empathise because of their lack knowledge.

However, some of us are being listened to and people are beginning to understand HCV better. But it is a long way off from the way it should be. Also, as each of us is treated and our stories are told a truer picture will emerge regarding HCV.

With new treatments for all genotypes and a vaccination on the medical horizon..perhaps HCV will be consigned to history.

Merry Christmas and Happy New Year to all !!!

cityman62 profile image
cityman62 in reply toart4949

Well said....

RodeoJoe profile image
RodeoJoe

Yes I do understand the dilemma. You can either help them with the story line or they will do it anyway without any guidance. Hopefully you can help them make the best of what could potentially be damaging.

Perhaps showing how drinking after diagnosis will stop you getting a transplant. And showing the full extent of the symptoms that go with liver disease.

Please do your best to help them get it right!

But we all know their priorities will be a story and viewing figures.

I think this community can use the storyline (however it manifests itself) as an opportunity rather than a threat, notwithstanding the very reasonable concerns that contributors have identified. Inevitably, the storyline will give us a way in to raising issues, by writing to national and local newspapers, writing blogs, tweets and using other social media. The more we expose people to the issues, the more opportunities we have to share our perspectives, including those of alcohol users who did not deserve cirrhosis or liver disease.

It will be better if the programme is accurate but let's not hold our breath on that one; rather let's commit to using every opportunity to tell the true story of liver disease.

jules45 profile image
jules45

Hi Katie, I totally agree with your post. Will it show him giving up drink for 6 months - no doubt he will be an "emergency" and have an instant transplant. It probably won;t show the gradual ascities, various trips for endoscopies, banding, etc etc. Muscle wasteage, vomiting or they will probably show a few bouts of him being sick. I realise that liver disease needs highlighting but it is a long long journey before transplant if you are lucky enough to get one. The make up department at the BBC will be able to do the jaundice without a doubt. Will it show Phils arms and legs like matchsticks and a huge tummy. I know cirhossis needs to come to public attention but I just have mixed feelings about such a complicated illness being dealt with in a few episodes.

It will make people think that a transplant is easy to get and get on with it.

best wishes

julie

RodeoJoe profile image
RodeoJoe in reply tojules45

I completely agree with you Julie. Let's hope they get it right.

Katherine1962 profile image
Katherine1962

I follow on Twitter a writer for Eastenders -think I will ask him his views on this.

Could t agree more Katie -sick of people saying (after I tell them my poor husband has liver damage due to haemachromotosis) -'oh did he like a drink then'. Grrrrrr what did I just say to you he has a genetic disorder but they hear 'liver' and that's it -= alcohol. 😥😥

AyrshireK profile image
AyrshireK

I see the British Liver Trust's Facebook page has gone mad on this topic too.

Quite a good debate going on.

Katie x

cityman62 profile image
cityman62

Absolutely,as a hep c victim,before 1990,the post mortem report would read-alchohol abuse,unfair/incorrect and an unkind load on left behind family.

cityman62 profile image
cityman62

I have very little hope of a trashy,hugely depressing soap doing anything- at all,to advance public understanding of the multi-faceted and myriad causes of liver malfunction.

bobbycat profile image
bobbycat

There was a mention by Phil that a bloke in his ward had cirhossis but not drink related....but not much info..I just wish that the alternative to alcohol cirrohsis was mentioned more generally. How about a documentary? Btw I have PBC that is in stage 4..ie cirhossis now

Jahida profile image
Jahida

EastEnders researchers actually got in touch with me quite a few months back about liver disease symptoms and how it affected my life. I've also recently written a post for their blog which hasn't been published and I did make a mention of different liver diseases. Not sure what the edited version will actually look like!

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