Hi All, just wondering what people think of the above. I am becoming concerned that my cirrhosis monitoring is being dumbed down. I know my consultant works in the private sector, as do most, so I am thinking I would be seen more regularly if I was paying for it. Maybe I'm just being a cynic, or does money rule healthcare these days? What does the team think?
David
David,
It is a fine balance because you want the reassurance that you are receiving regular care and checks, which you can pay for privately.
Under the NHS you have to trust the opinion of the Consultant due to limitations on resources and the demands on them caused by more sophisticated medical advances and the increasing life expectancy.
I was diagnosed with a Pancreatic Psuedocyst and at the time, my job provided private health cover.
It was not in place when I was diagnosed with Cirrhosis and I saw the exact same Consultant under the NHS, the hospital was next door to the private one. She carefully explained that there would be no difference in my treatment whatsoever, the only thing that changed was the furniture.
Best of luck with your decision, it is your health.
Thanks Mark, I think I maybe just need a change of consultant, to one who shows more empathy.
David
I was offered a choice by my GP, I had to get her to nudge me in the right direction. You are entitled to ask for an alternative, as I understand it.
Good luck.
Hi Dave, l hope your cirrhosis is still behaving it's self.
All the private sector treatment and test are all done using NHS equipment, so any future MRI'S or fibroscan etc are all done on NHS equipment. In fact a lot of money that is made from the private sector to pay for this, is used to cover maintenance costs of the equipment. What l'm saying, is that you could end up paying to see the same consultant, who uses the same equipment just to give you the same results and advice. You may get faster appointments, but blood test results will still take the same length of time. It's ver much a choice thing.
If your cirrhosis is behaving it's self, l believe you should only be seeing a consultant twice a year, and have annual MRI's just to watch out for any possible tumours. Nothing to be concerned about, as this is merely a preventative measure. Good luck
Hi Richard, thanks for your reply. I was concerned with the occurrence of ribcage pain on both sides, but haven't had an answer for that. I was told at my last appt in March, that a further fibroscan was unnecessary, even though i asked for one ( the machine was sitting right next to be.... so near, but so far). He then told me he would see me in a year's time, as I had no new symptoms (what about the pain) No bloods, no US, or gastroscopy,( I used to have these 3 tests before my appt, but not this time), and I have never been offered a CT scan or an MRI. I just feel that I'm being sidelined, and that I should stay on 6 monthly monitoring as before, not annually. I don't want to go private, not least because of the cost, but just feel the consultant would take me more seriously if I was paying him.
David
Hi David. I mix the two. I am NHS but if he is way behind and I am waiting for my NHS appt I pay to see him privately. I get all the scans bi-ops etc on NHS. Hope this helps. Jacquie
A word of caution, having been caught out by this myself! If you are covered privately, and if you have been honest about your history (alcohol wise) previously with your GP/Consultant, when you phone to make a claim or request private treatment, as its Liver related you'll automatically be passed to the insurance claims 'Liver Police' who will scrutinise your history/condition thus far. If there is the slightest hint that it might be alcohol related (however many years back) then they won't authorise treatment! Personally I would pay a monthly sum into a separate account and switch between NH and Private as Jacquie said. ie: if you feel you want a 'proper unhurried' Consultation, select a private Consultant and book and pay for that, then see where it goes. Liver issues and Private Health are a total minefield. Good luck x
Hi Erica, Many thanks for the tip off. I have already found that with travel insurance, they want your money, but only if you don't make a claim. Just as I don't travel to North America because of the ridiculous premiums, I won't be getting health insurance, but, if I don't feel I'm not getting enough "bang for my bucks", I'll consider getting private tests done where my present consultant has refused. I will obviously not choose the same consultant for private treatment. I bet my consultant would be more than happy to charge me for a another fibroscan, but refused me one on the NHS.
David
That's so wrong, and when I got 'clobbered' I was furious. It was my Private Consultant who dropped me in it! He should have known the consequences of writing a letter to my insurers with the line 'this lady came to me with a history of excessive alcohol intake'. Apart from the obvious throwing of a spanner in the works, I genuinely didn't think 2-3 beers a day or 2 glasses of wine a day in my youth to be excessive, or label me a heavy drinker, but he used those words and they could not be unsaid. I did contest it with the insurers, as following the investigations, bloods and scans (at that time), he further reported (and copied to insurers) 'there were no signs of fibrosis or cirrhosis, I had a normal liver and spleen', but they kept referring back to my 'heavy drinking past'. I asked, 'if I was a 50 a day smoker with respiratory concerns, and asked for a private referral what would be their take?' Apparently that's completely different, and I would get an unequivocally paid referral! Its pants! The sad outcome was that I didn't feel I could be completely honest with my NHS Consultant (who I have complete faith in), because everything is documented. The saving grace for me is I've taken my latest episode extremely seriously, and have completely stopped alcohol, and my bloods are already reflecting this, so although I've 'stretched' the truth for the last few years, I really am now on track, and intend to stay there, and pray I've caught my problems in time. I wish you well, follow your gut feelings, and take care, Erica
Oh Dear Erica, that consultant should be sued for defamation of character, nevermind data and confidentiality breach.Unfortunately, what's said can't be unsaid. The amounts you were drinking were not that excessive so why would he say you had an alcohol issue. It's great you are now off the drink now. I have been drink free for 2.5 years now, and found giving up very easy when given the F4 cirrhosis diagnosis, a no brainer😁😁 There's no way I will pay £2000 for a 2 week trip to the USA. You have a very good chance of improving your liver health, and even mar reverse some of the damage that might have been done. Just keep dry, eat well, low salt & sugar, and exercise, and you will notice the difference.
Keep Well, David
This is a tricky one. It’s a matter of life and death that a heavy drinker sees their GP if they need help. This takes priority over any possible health insurance effects. But it’s likely to make some heavy drinkers hesitant to see their GP ☹️
I hope it wouldn't deter anyone from seeing their GP, but it might very well encourage a less than honest consultation. It certainly creates a very difficult issue....
And not one I’d thought about to be honest.
Without giving too much public info, I had to get a special check done to make sure I wasn’t a naughty person 😀 and this involved people speaking to family, friends, banks, employers and all sorts of people. I wasn’t asked for my GP’s details as somewhere on there it will say I had one visit to discuss my drinking. Maybe I should make an appointment with my GP to say I’ve stopped!
If I had my time again, I’d have seen my GP of course.
We find that cannot consult our overworked and overwhelmed GP and expect the same response that we received in the past.
Our GP is not a specialist in our ailments (both of us with cancer) and we therefore opted for private consultations in the first instance. We had to do the footwork. Our GP was very helpful in advancing our cause. How far you go ultimately depends upon finances/whether you are lucky enough to have insurance.
Hi,
I am a private patient at the Royal Free and have been for 5+ years. I was initially diagnosed with cancer there and have been treated there ever since.
I am due my 7th cycle of immunotherapy next week and this is how it will go:
Tuesday bloods, weight meet my Professor. As long as everything is as expected I return on Wednesday morning for my medication.
I am on Nivomalab fortnightly which I believe is not available on the NHS as it is hugely expensive.
When I got the call for my liver transplant, that all comes under the NHS. It was halted due to a massive haemorrhage I suffered and then I spent 12 days in a coma in ICU.
I was told I would never leave the hospital and even if I did I would live no more than 6 months.
That was 2 1/2 years ago.
I cannot say if that is because of private care, but I do know that without it I would probably be dead.
I am happy that any monies paid over go back into the upkeep and maintenance of the systems, but the ability to see my consultant as and when I need them is invaluable.
I can see my consultant quicker than I could see my GP, and he is an expert in oncology. My results are given to me straight away and I do not have to stress about anything, which for me is a lifesaver.
As you have been warned you must tell the insurance company everything or you are just wasting money. I am very fortunate that I have had BUPA for 35 years, and undoubtably it has saved my life.
Ray
Hiya David,
I'm in USA, totally different healthcare system, so can't comment on that. My father, however, was Canadian, which I understand is similar to NHS in UK. I will allow, I could be wrong.
IMO, he was deemed too elderly and expensive (he had heart, and ultimately, kidney disease) to warrant looking after aggressively. Upshot is, he died, when, if he had been treated for his heart disease in the USA, l believe he would still be alive instead of suffering through years of dialysis before his death. He kept saying how great it was he had free healthcare. His MIL same thing, she had cancer, not a priority to treat her aggressively due to advanced age.
Money is always going to get you the best healthcare, look at the Royal family! And the old politicians here, with their money, they can afford the best. I'm not saying it prevents all disease or sickness, obviously, but that money gives you the very best chances. It's unethical, that's for sure.
Hi Boots, I'm so sorry about the treatment your father had in Canada, that kind of ageism is just not fair. Everybody should be treated equal. I have been told that at 72 years old, my chance of a liver transplant is "unlikely", so in that respect the UK and Canada are similar.
It's true money gets you the best care in a capitalist system. Our Royals are definitely living a very, very long charmed life. I wish I had a butler to iron my newspaper for me every morning 🤣🤣🤣. They are, in my opinion, obsolete in today's world, and not value for money (sparks might fly for my sacrilegious comment 😆😆😆😆) Still, maybe I might win the Euromillions lottery, and declare myself King David of Buckinghamshire 😁😁😁.
David
Hi Boots, your last message didn't show up on the thread, so only saw a part of it.
I was a failed rock star, but I don't think that will count 🤣🤣🤣. I don't let it worry me, try to keep happy even if that means being naughty now and again, like my really hot curry last night 😋😋😋
David (aka Lord Lou, He He He)
Now David, less of this fail rock star feeling, I bet you we're ACE back then and you made loads of people happy with your music! Just think your still making people happy in a different way by being on this forum! I like reading your messages and replies and so do others ! So keep doing this 🤣🤣🤣🤣😁😁😁😁😂😂😂😂 and maybe a bit of this 😜😜😜
Thanks Trish, I guess I did make some people happy with my music, especially when I stopped playing 🎸🤣🤣🤣🤣🎸. Yesterday, I was in the garden, and was singing "World Without End" by Crowded House, and my neighbour called over the fence " you've got a good voice David" , I was very pleased for the compliment, but glad she didn't mention my loud guitar playing 🎸🎸🎸😆😆😆
I am really glad I found this forum at the beginning of my cirrhosis journey. The support, and the feeling of "not being alone" in this really helped me to come to terms with my illness. I will stay here as long as I can make a positive contribution to others concerns. Of course, I do enjoy the jokey banter as well 😁😁😁
David
I agree on both of your comment David ! Maybe you've still got some music to give others if you neighbour liked your voice. Why don't you give it a Blast at your local as your never to old ! X
Hi Trish, my church have an English folk band, led by the pastor, and I was asked to join. I felt it was too much with practice sessions and gigs etc, and no pressure if I don't feel OK . I'm happy just playing to myself and family, 'cause they all join in.
David
Nothing wrong with being a failed rock star 
I still look at my guitars and dream aaah!! The sixties!! when I was young and skinny and thought I knew the lot! LOL
You still know loads Alf! You've proved that in your PM's
I love all you mad ex Rock Stars! Wanbees in 😂😂😂the nicest possible way!
Bye from your 60's
Mary Hopkins Wanabeee 😄😄😄
Me too Alf, I still have my first guitar (a Spanish classical which I restrung with steel strings, and for a lefty) I would love to be back there again, it was a great time to be young 😊😊😊. I feel sorry for the kids of today don't have anything like that. My daughter still love the music from those times, when we used to listen or play together. If they invent a time machine, I'll be first in the queue 😁😁😁
David
I'm with you there David, save a space in the time machine! My first was a Hofner acoustic. I moved from that to a Maton semi acoustic that I sold when we were putting down a house deposit ( had to pay double deposit because we were so young!) I still mourn that guitar. I have 17 now and a banjo and a ukulele. I started making a guitar donkeys years ago. I made the fret and still have the wood for the main body. See what this has started...…..I think I might finish it now My son plays guitar too. Thinking about it, to finish off my guitar I will have to 'borrow' my machinery back from my son. I gave him the most of the contents of the garage when I was told that I was terminal (I was too ill to use it anyway at the time) and what I didn't give him he's 'borrowed' since anyway!
Great reply Alf 👍👍👍, I have only three, my first, a Fender electro acoustic, solid top....great tone!!!, and a Gibson Les Paul in cherry starburst... It's the dog's doodah's, great when played through my Fender Mustang combo amp. You should finish off that guitar, just look at what it did for Brian May 😁😁😁. I have a nephew who plays guitar at shows in the West End. The last one I saw him in was Motown The Musical, nice, but not my type of music. I bet your glad all your tools went to your son, now at least you can borrow them back🤣🤣🤣. I sold most of my live steam garden railway loco's after my diagnosis, so I now do it indoors in a smaller scale (not the same though 😥😥)
David
I'd love that Gibson Les Paul (jealous or what?!!!). I've got a Fender Strat, Fender Tele, a lovely dean resonator among mine. I'm like you, I play for myself now and sometimes along with my son,. Some of his music taste is quite different to mine though! Must be great for your nephew doing a job he really enjoys Shame you got rid of your steam loco's, I bet that hurt 
I'm putting finishing my guitar on the project list. Move over Brian May I think not!! Alf
Hi Alf, I wouldn't mind another tele, but my Les Paul is staying here, sorry.
I would love a resonator, All my kids still like the music I brought them up on, and some more modern stuff too. Yes it was very hard to sell my loco's, and watching the gardeners I hired to dismantle my railway ant turn it into yet another huge lawn to mow, nearly made my eyes leak. I only kept one 'cause it had my fathers name on it. Great that your finishing your guitar. I look forward to hearing of your progress.
David
Talking about time machine! One of you pair could then teach me🤣🤣🤣🤣 I can dream ....
Trish, just get an acoustic guitar, go on the web and search for a chord chart, and then just learn 3 very easy chords A,D &G, then you will be able to play hundreds of songs and become a Rock Chick 😁😁😁😁 Easy Peasy.
David
I like the sound of becoming a Rock Chick !!! 🤣🤣🤣!
With Alf and his wife giving me ideas how to use up my pine cone's and the idea of sourcing a guitar, I think I'm going to become busy very soon ! 😂😂
Future Rock Chick signing off
Hi Trish, Go get it Girl 🎸😁😁😁🎸 you know you want to😁😁. Don't just dream, FOLLOW your dream. If you make it to stardom, can I be your roadie😆😆😆
Rock Senior Citizen✌✌✌🤣🤣🤣
Roadie to 'Rock Chick' of course😁 How far away did you say you lived?? Was it Canada or the US?
Phoenix also plays so I think we have band forming here with
Lord Lou, Pheonix, Alf and Rock Chick!!! 😂
Might be a bit difficult meeting up for practice sessions
Does anyone have a magic carpet ? Alf maybe you could pick a vintage one up 😃
Hi Trish, not so exotic I'm afraid. I'm in South Buckinghamshire, but still a bit exotic, we have a few Old famous rock stars nearby, including Lord lou🤣🤣🤣🤣. Oh yeah I know about Phoenix's musical prowess, we have chatted about our music in the past. I must warn you I don't do Gospel 😎😎
David
I've never consider Gospal! Folk for sure! On the plus side your a damn closer than Canada or the US ! 😁
Anyway more to the point, hows you feeling today ? That goes for you too Alf?
Yep Trish, had a good day today, but the garden is too bloody big. Like the Forth Bridge.
David
That's a tough one ! Keep smiling! 😁
I'm going to echo Davids reply Poor wife has to do most of it
Sounds like you both have lovely wife's which is wonderful ! 😁😁😁
You Lucky Bu99er Alf, my lovely lady is a wee Scottish titch, so couldn't handle the mower.😥😥😥
David
My lovely wife thinks nothing of laying slabs and chopping down trees. I'm happy to say that she also very feminine How good is that!! LOL
Cor Blimey Alf you stuck gold there mate😁😁😁 She sounds wonderful.
Does she do tree surgery by any chance?🤣🤣🤣
David
She'll tackle anything mate! She's up on the garage roof tomorrow to fix the gulley between the cottage and the conservatory (we've had a leak in the heavy rain recently). She says that no way with my back, knee and hip problems am I to go up there. I said that I need to take a look. She said buy a periscope then
Alf, she spoils you rotten, you lucky sod 🤣🤣🤣, and a great sense of humour too😁😁😁.
David
Yipeee! I will have my daughters guitar as from next weekend! 😁😁😁😁Who a happy bunny then !
Great news Trish, your on the way to stardom😁😁😁. My wife is in Whitehorse, Yukon,Canada just now with her sister who lives there. It's first nation day today, and their going to the celebrations. I am sooooo jealous, I loved it when I was last there pre-diagnosis. Caribou stew and Bison Burgers 😋😋😋. As Alf says, there are loads of youtube video's to help you.
David (Roadie-in-waiting)🤣🤣🤣
Hope your Roadie vehicle is all sprayed up and ready to goooooo 🤣🤣🤣
My daughter has a VW Camper called Ronnie (Wood?) She might let me borrow it, if I promise not to paint it with hippy Kama symbols and psychedelic scenes. She's still got my Afghan coat I bought from Kensington Market in the day, great coat, but stunk to high heaven.
✌ Peace Man,
David
Great man but not sure about the smelly coat! 🤣
Are we referring to the Ronnie Woods from the Stones ?
Yep , we are. ( the coat doesn't smell anymore)
David
Thats so cool that you still have the coat 😁 I approve! Lol
Trish, I kept a lot of my gear from then, Kaftans, tie-dies, leather great coat , and of course my cuban heel stage boots 😁😁😁 I've given them away now, sadly.
The Afghan coat ( it smelt of rancid Yak)is the only thing left. ( My daughter wears it to fancy dress parties now😊😊
David
All I can say is AMAZING on all the stuff you've kept ! The only thing I have from the 60's which is not hippi is one long black dress I'm trying to get back into! I wore for a beauty competition which I won back then aged 17 ! 🤣🤣🤣
Oh well ! Hope your well enough to enjoy this lovely weather! I'm off to estates private yearly summer garden party held on the green outside my front door! The estate was built in 1726 which used to bean old hospital now converted into houses and apartments. I live in the listed lodge !
Take care!
Crickey Trish , you are a pin-up 😁😁😁. I threw all my Mary Quant dresses away years ago🤣🤣🤣🤣🤣
Hippy Guy✌✌✌
Oh Poo! I loved Mary Quant clothes too! My daughter is a great designer and ex model! She won a design competition against other UK universities and was presented her award by Mary Quant ! Lol 🤣
I'm busy cleaning the oven out and also tidying garden up too until later !,
Hi Trish It's a lot easier to learn to play now lots of sites on YouTube. Justin Sandercoe is good. I was like David, learning from Bert weedon
Cheers Alf! I will do both when I pick up daughters guitar next weekend! 😁😁! I've also been busy collecting more pine cones whilst walking to feed the cats Mia and Katniss who now seems to like being cuddled now 🤣🤣
Of course they'll cuddle up to you, you're the one with the can opener this week
And there was me thinking it was my charisma they'd fell in love with (lol) spoil sport Alf!😁
Hi David, really sorry your illness has all this added stress. My experience definitely favours the NHS. Without telling a long story, when I first started going yellow, we sought private health care, had a lovely consultant, had tests and caused a bit of head scratching as to what was going on. In the end this private consultant referred me to the John Radcliffe Hospital, and from then on it was NHS all the way through transplant at the Royal Free and they were all amazing! Quick too. I took ill this week last year, and was blessed with a transplant in January. We saw the best both of private and the NHS, but in the battle of the bests, NHS won by a country mile! (although correspondence was fun, three letters for the same appointment, letters arriving after appointments had taken place etc!) But it was never a problem. Nothing political going on, I just owe everything to my wonderful NHS carers. Hope things work out for you with your concerns...it's awful you should feel your condition is being dumbed down, I hope you quickly find the same positive experience I had. Good luck with everything, Mark
Thanks Mark, I'm always pleased to hear of stories with happy endings, Well Done to you. My wife was a Matron in the NHS for many years before retirement, and through friends and colleagues still working in Bucks Trust, they are at breaking point. Not enough funding, Doctors,Nurses, and equipment. That's why ScanAppeal is so vital in providing the equipment needed. I do feel a lack of enthusiasm from my consultant at my appts, so I think he is feeling the pressure. I would like to be monitored 6 monthly as I was before, so that's partly why I feel I'm being sidelined. Of course, I am "unlikely" to be considered for transplant due to my age (my consultants words, not mine) I realise that all transplant recipients are very grateful for their amazing gifts, and the team that made it possible, but I almost feel consigned to the scrapheap with just palliative care. After all it's my life at stake isn't it.
David
Scans, which ones are best 
Value and protect our NHS
New to group, caring for a sufferer
Thank you and encouragement - it can get better.
